Liv Life

I can't deny........

2012-01-13T12:23:00.004-06:00

That I'm:
sad.
worried.
frustrated.
overwhelmed.
confused.
scared.
mad.

I'm only human, right? I need to admit something. I try really hard to have an exterior that exudes strength and happiness. It's not always a true front! There are days that I have this candy coated shell, while inside I'm screaming and think this pit in my throat is going to constrict my ability to breath. I'd like to blame my ongoing mood on the lack of sunshine, but that's not true. I think I'm just sad. I feel alone and I'm tired of worrying.

Did anyone notice the above list is shaped like a diamond? Totally unintentional on my part, but maybe it was meant to be.

After I typed the first paragraph I literally wanted to stop and slap myself across the face. I HATE blogging like this. Yes, it's honest and real, but I don't like to complain. I thought about erasing and starting over because who doesn't have SOMETHING and who wants to read my sob story? But I didn't. I kept reading that list over and over again and then noticed that it looked like a diamond. So, I decided to google "diamond" and after reading what Wikipedia defined diamond as, my blog now had form. Literally. So, here goes.............(read HERE, just the first two paragraph's if you want to know where I'm coming from, or just read on!)

A diamond, something that is unbreakable. Obviously that does not define me. However, the unbreakable bond that I have with Liv is something pretty spectacular. We have something different between the two of us that is hard to explain. I understand her and know what she wants. This bond and mutual understanding is something that I don't think everyone gets to experience. I have a bond with Finley, a great one, but it's very different than Liv's. Diamond's are remarkably beautiful and have a luster that make them treasured by everyone. Have you ever heard anyone say "yuck, I never want a shiny diamond!" Probably not. There aren't many diamonds out there that are perfect. Some have small flaws. I would never describe my kids as "flawed." But we all are in some way. When you start dating someone, you notice their "flaws" that annoy you or maybe attract you. Livia has a pretty major flaw, a genetic deformity, to be exact. But so do I, Jake does, and so does Finley. You know what? There is a large percentage of people out there who have some sort of genetic mutation and don't even know it. But does that mean you aren't beautiful and unique? So often I find myself really upset when I see Livia around "typical" kids her own age. Kids and adults notice that there is something different about her. I put my defense up and am ready to pounce and defend her if needed. I think I need to change my attitude. I have a chance to teach kids and adults compassion to others. It's hard though, because you don't want to dive into details of why Livia won't talk back to you or why she likes to chew the arms off her Barbie. I need to just compassionately tell people that Livia is like a diamond......she's beautiful, unique, and different. Ok, so I probably wouldn't ever tell someone that my child is like a diamond, but you get my point!

Also can't deny:

That I'm:
ok.
lucky.
blessed.
encouraged.
faithful.
strong.
me.

This diamond was formed on purpose! My candy coated shell didn't just form overnight, and isn't always just a front. I'm allowed a few tears here and there and I think this post helped put perspective back in it's place.

Christmas Cookies and The Wiggles

2011-12-20T14:05:00.008-06:00

My neighbor, Katie, asked if she could come over to bake cookies with the girls and I. Sounded like fun, and it's never bad to have an extra set of hands when a mess is about to be made. Finley was so excited and kept asking to start. Katie got a little hung up with something she had to do for her job, and was going to be late getting to our house. I decided to start the process to keep Finley happy! I thought she would really enjoy making the peanut butter cookies with the kiss in the middle. This would involve rolling the dough balls in sugar, counting out kisses to match the number of cookies, and putting a kiss in the center of a circle. All things that Finley know and understand how to do. This was the first year that I've been able to experience something like this with my child. The year that I was pregnant with Finley, Jake, Liv and I made sugar cookies. Livia was never really interested and didn't help out long. We always try to engage Livia in all the activities we do, but she usually has her own agenda. I couldn't help but get a little sad that Livia wasn't in the kitchen with Finley and I counting out kisses, laughing, and talking about Christmas "stuff." Liv would run in the kitchen and take me by the hand and show me what Wiggles video was playing on You Tube. You see, this is what makes Liv happy. She LOVES LOVES LOVES music, The Wiggles, and Elmo's world on You Tube. She laughs, dances, and sometimes sings a few words. Finley was having such a good time in the kitchen with me. We were enjoying what we were doing. As much as I wanted Liv to be in there with us, I stepped back and realized that I was bummed because of what I wanted. Livia was perfectly content and happy. There is a book that I have called "A different dream for my child." It's a great book, but just the title came to my mind. I can't bring myself down with MY wants with Livia. She is probably the happiest kid I know, and that should be enough! There are going to be moments like baking Christmas cookies with Finley, that make me wish Liv was typical. However, knowing that she is just as content watching the Wiggles and wanting to share that excitement with me makes me happy. I'm counting my blessings today for being able to experience two different worlds with my children. Livia; pure happiness, innocence, and love. Finley; normalcy, words, independence, and a vision for what's most important.

Above and Beyond

2011-11-29T06:58:00.003-06:00

Occasionally, I find myself sending out mass emails to family and friends asking for some sort of "viral" help. Many of you have been involved in online voting to win funds for some sort of Sanfilippo research. I usually initiate this voting with mass emails encouraging friends and family to go online and vote. With all your help, we've won a majority of these contests. Thank you! I also send mass emails to a select few family and friends asking for another kind of help. At times, I'll get emails that offer free diaper samples or a chance to win a sleep safe bed. Basically, special needs give a ways that could come in very handy. Recently, I sent a mass email to that select few asking them to get free diaper samples for us. I then had some of those recipients send them out to people they knew that would be happy to help. A week or so ago I got an entire pack of diapers in the mail. I thought it was our free sample. I put it aside thinking we're going to be set with diapers for awhile. The other day, my mom asked me if I got a pack of diapers in the mail. I said yes, and shared in my joy of getting an entire pack for free (when initially I thought we may only get one or two....hence the help hoping to maybe get an entire pack with all the email participants.) She then informed me that my great aunt's friend wanted to do more than just a free sample and ordered us a pack. I'm so thankful for this gesture. I had no intentions of people ordering us diapers, or looking for a hand out. Just a free sample that may add up to a pack. When people go above and beyond, it humbles me and makes me want to pay it forward. We've seen a lot of generosity, and that going above and beyond since Livia's diagnosis. I'm learning that people want to do something or want to help. And if it's buying us a pack of diapers, which does help, then I feel like they are easing the pain of a terminal situation. What I mean by this is that people who want to be involved in our family, and know the details of Livia's diagnosis, know that right now there is nothing out there to help her. Our responsibility as her parents, is to give her the best life possible, right now. That means, keeping her healthy and keeping up with her appointments, providing her safety with more than you can imagine, keeping her happy, and loving her unconditionally. People want to help with this, and we can't do it on our own. It takes a community to raise a child (this is an entire new blog with that past statement!) Anyway, I'm so appreciative of the people that want to help our family and the foundation. Thank you for the diapers, the cards, the emails, the money, the words of encouragement, the prayers, and everything in between that I'm leaving out. Every single "above and beyond" touches my heart and helps my child! This is such a good example of what we want Liv Life to look like. I know this is my way of paying it forward.

Proverbs 11 24:25
One gives freely, yet grows all the richer; another withholds what he should give, and only suffers want. Whoever brings blessing will be enriched, and one who waters will himself be watered.

Luke 6:38 Give, and it will be given to you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you."

Minnesota and a Roller-Coaster

2011-11-10T14:08:00.003-06:00

The last week of October was spent at the University of Minnesota for the Natural History Study. My dad went with us, which was great. I enjoyed his company AND help, tremendously. Even though it was only our second time there, I felt like an expert at the routine of the trip. Getting to the airport, getting through security, what I needed for Liv, flying, getting our rental car, getting to the hotel, GPS, etc.etc.etc. I know all of this seems routine, but the first time we went, it was nerve-wracking. Anyway, it was a smoother process this time. We flew in on a Monday, and got there at a decent time. Enough time to venture out and have a little fun. I decided that we should go to the Mall of America. I'd never been before, so I thought what a perfect time to go. We arrived at the mall around lunch time, and all that morning Liv had been telling me "play." This meant that she was done sitting and wanted to get up and play! I was, too! So, we grabbed some lunch and sat around the edge of the food court and watched the roller-coaster's, rides, and fun going on around us. Livia was so excited, and secretly I was too! I did think that the amusement park would have been bigger, but it really is a nice size for little kids. Not too overwhelming. So we ate and then went for some fun. When we got our ride tokens, Liv bolted to the Merry-Go-Round. This has always been her favorite. I love how vocal and giggly she gets when she's enjoying herself. It really is the best sound! My dad watched us go from ride to ride. Since Livia has special needs, I got a special pass that allowed me to ride with her AND it didn't count against her tokens. Pretty nice. She was having so much fun that I decided we should step it up a notch and try a "real" ride. There was one coaster that didn't have flips and looked pretty safe. She JUST made the height requirement and I was secretly jumping up and down inside myself. We jumped in together and off it went. There was that typical incline before the ride really took off. I did have a temporary moment of "oh no, what did I get her into. How is she going to react to this?" It started going faster than I expected. After that first turn, I heard it.....squeals of laughter and enjoyment. We could see my dad standing below and I told Livia to look at Papa and wave, she said "PAAAPAA." It was perfect! We went on the ride twice.

The rest of the MN trip went pretty much just like the last one. We even stayed in the exact room as last time. We had great accommodations and were treated well. Dr. Whitley took a lot of time talking to us about potential therapies, time lines, and procedures. Developmental testing is the tiring day. At least Livia gets to play during this day. Lots of forms to fill out. YUCK! Some of the questions they ask are frustrating, but necessary. Then it's the day in the OR. Livia did a lot better this time because she didn't have to have her tonsils or adenoids messed with. She is such a trooper. Good traveler, and brave patient. During the wait while Livia is in the OR is when Dr. Shapiro comes in to talk to us about Liv's developmental testing and the forms I filled out. This is really the worst part. They tell us where she is functioning compared to her age. We know that she has digressed some, but to hear the things out loud that the Dr. has to say is always hard. It's moment's like this that I have to remind myself why we are here. So, to end this post, I'll share the pic of Liv and I on the roller-coaster.

Unexcused absence

2011-11-09T12:26:00.002-06:00

I have neglected my blog, for really no reason. Life has been busy, but who's isn't? I've felt like I haven't balanced my "jobs" very well lately. I've also been very consumed with some situations that have occurred in my life. Without going into detail, some things have happened that have made me very sad, angry, and confused. When things happen with people you are closest to, it can be hard to separate and ignore that this is their life, their decisions, their consequences. Because, when you love and care about people that are making choices that you don't agree with....it's hard. Last night at life group, we watched a video from Jimmy Evan's marriage series "Marriage on The Rock." It was such a powerful message and made me think of so many aspects of my life, not just marriage. I walked away from last night with the situations that occurred recently weighing heavy on my mind. I took away from this video something so simple, but so powerful. Our mouths are God's mouths. The words that come from our lips are nuclear. Words have the power to encourage, but they also have the power to destroy. We should use our words as if they are coming straight from the Almighty. Proverbs 18:20–21 — “From the fruit of his mouth a man’s stomach is filled; with the harvest from his lips he is satisfied. The tongue has the power of life and death, and those who love it will eat its fruit.” (NIV)

From the time we are born, and when we are little children, the words we hear from our parents, family, and loved one's are words that we always believe to be true. Last night the analogy was used comparing words to seeds. If our words are like seeds, and we continually walk around planting seeds of negativity, then we will bear bad fruit. If we plant seeds of positivity, we bear good fruit. This analogy, again, is simple, but can be true in so many aspects of life. Raising our kids, our marital relationships, friendships, employees/co-workers, everything! Words can wage war, or they can bring peace. Also, once words are spoken, you can't take them back. Hopefully, if you're spitting bad seeds everywhere, you can recognize it and change. But only you can bring about this change. Negativity, untruths, bitterness, and anger are all very ugly and can affect everything in your life.

This blog was started because of Livia's diagnosis. Where we are today, in life, is really quite amazing to me. My kids, my spouse, family, friends, strangers (some of who are now friends), my church, and everything in between are all amazing blessings. I feel extremely encouraged to be able to say that I am a happy, healthy, lady walking around with a heavy heart. I can't ignore the sadness that comes along with Sanfilippo Syndrome, but it doesn't cause me to be bitter or plant those negative seeds. I've quickly learned that life is way too short not to be happy and make the most of every single day and every single relationship that is put before me. Our pastor said this, that will always be in my heart. In the end, when we go to heaven, what is the only thing that we can take with us? It's not our things, our stuff, our prize possessions, it's only our relationships that will be in heaven with us. Today, be an encourager and find what makes you happy. It will make everything else in your life shine.

Natural History Study, Round 2

2011-10-21T14:18:00.002-05:00

Livia, myself, and my dad will be heading to Minnesota next Monday. I'm looking so forward to having my dad along on the trip. We should arrive in MN at a decent time on Monday, so I'm thinking a trip to Great America might be on the agenda. We should have a little fun while we are there!

Tuesday will be a long day of developmental testing and forms to fill out. We will also be meeting with the Geneticist, Dr. Whitley. He is a very personable man that is more than willing to talk with us and answer any questions we may have. Last time we were there we were treated very well.

Wednesday will be a long day. We have to be at the hospital by 5:40 am. Livia will be having anesthesia for an MRI, ABR, lumbar puncture, tubes, and x-rays. She will be in the OR for about 4 hours. As much as these are routine procedures, and my background in the OR, I still can't help but be a little nervous about her going under. I have total trust and faith in the OR staff, it's just letting go. Last time they let me go in the OR with Liv until she was totally asleep. I was very surprised they let me in. I imagine how some parents may feel watching their child go under. I've seen it a million times, but not my own child. To see her like that was a little hard. She was scared anyway, and I'm sure wondering why I was letting these people at her like that. These are necessary things that need to be done. It just hurts my heart a little.

Lately I've been going into Livia's room in the mornings before she wakes up. I've been standing over her bed just listening to her sleep. I pray over her. Every little breath I hear, I'm thankful for. More than anything, I don't want my child to hurt. The circumstance that we are in can be really hard at times. I find myself being very strong when I need to be. I can give all the facts about MPS, and recently educated a medical student AND physician about Sanfilippo Syndrome. However, in my vulnerable times, when I'm alone, or even praying, I'm scared for Livia. "Break my heart for what breaks YOURS." In these vulnerable times when I'm scared or sad, I have to remind myself that God is right beside me crying for Livia as well. I've been entrusted to take care of this little angel, and that brings me comfort.

Please think of Livia next Wednesday. Say a little prayer of comfort for her.

Pampered Chef

2011-10-04T13:55:00.001-05:00

We are hosting an Online/Catalog fundraiser for Liv Life Foundation. Donations of up to 25% of the fundraiser's total sales & a $3 contribution for each Show booked from our fundraiser will go to our organization. Visit the link below or let me know if you want to look at a catalog. Show closes Oct. 21st. Stoneware is on sale!!!

PAMPERED CHEF ONLINE ORDERING

Stone Bridge

2011-09-28T11:36:00.006-05:00

This week marks 15 weeks of training for Stone Bridge Marathon. October 8th is the day for 26.2. I'm actually getting very excited for the day. Who would have thought? I think I'm most excited about accomplishing this and crossing it off my bucket list! I couldn't have done all this training alone. I've had the privilege of training with my friend, Ed. He has been such a support, encourager, and mentor not only in this marathon training but also with Liv Life. I can't thank you enough, Ed, for all your hard work and heart you've put into training and the foundation! I'm so thankful our paths have crossed and this relationship has been formed! I couldn't have done this training or half of the foundation "stuff" without your input and knowledge.

So, on Oct. 8th, come out to Belvidere, Roscoe, and 26.2 miles in between with all your Liv Life gear, posters, etc. to cheer us on! We'd love to see the support along the way.

I Have to also give a shout out to Jake for all the support and encouragement he has given me during this training. You are my biggest fan and love that you support all my endeavors! I'm lucky to have such a supportive spouse! I love you!

Making up?

2011-09-13T14:05:00.004-05:00

Since Finley has become verbal, she knows what she wants. Deep down, I really love this about her. It can be very hard trying to compromise with an extremely strong willed 2 year old that talks well, at times. One of her favorite things that she says to me on a daily basis is that she "want to sleep my momma." She's in a "big girl bed" and we've been really lucky with an easy transition. Nap time, on the other hand, has been different. I think because she can see all her toys and books it's to tempting to stay in bed. So, when she started asking to sleep in my bed during nap time, I gave in. I usually get her to sleep (falling asleep myself for about 20min) and then walk out to get something done. Today, as Finley laid peacefully in my arms, rubbing my face I couldn't help but think about the time I was getting to spend with her. That moment in time. I was holding her like an infant. Cradling her and tickling her limbs to get her to rest. It made me reflect on the time she was an infant. That time that I didn't get to bond with her, because life was literally turned upside down. To this day, when I think about that time, a wave of nausea comes over me. So, am I making up for that lost time? Maybe. I know that I wouldn't trade our nap time ritual for anything. More than anything I want Finley and Livia to know how each of them are making an impact in my life. Everyday I learn something new from my girls and really learn something new about myself.

The Hubert's are most definitely dancing in the rain. With the occasional run for cover when we spot lightning, but hey, that's what keep's life interesting! Livia is in school and once again LOVING every minute of it! She loves riding the bus and I really think school is the best thing for her right now. At the end of the summer Jake and I were discussing that we thought Livia was regressing a bit. Well, I'm happy to report that since school has started, our Liv is back. She is more focused, using words, making more eye contact with positive facial expressions, and all in all more in tune with her environment. Now, if we could just get busy with finding that cure for MPS...HEY, Miracle Drug, by U2 just came on. Maybe it's a sign! I'm praying that Liv's Miracle Drug comes in time!

A punch in the gut

2011-09-01T09:11:00.003-05:00

Yesterday was a really difficult day. I got the news that Rachel Ferguson, 9, with MPSIII A passed away peacefully in her sleep. 9 years old! This hit me like a TON of bricks. I'm part of a MPS group on facebook, so there were a lot of people giving this family words of encouragement and expressing their sadness for their loss. I saw a post from another mother who lost her 7 year old. 7?!? It's not like I've not known of other children passing from this, but for some reason it was different yesterday. I think, because we haven't had "bad news" in awhile, I was living our "normal" and things were good. I think part of our "normal" is living in a bit of denial about Sanfilippo. Not that I completely deny that Livia has this, just that I put it away and LIV day to day. Enjoying each moment. Yesterday, seeing this young girls beautiful face all over facebook and knowing how young she was, threw reality right back into my face. It was a punch in the gut that left me very frightened and aware. Aware of the fact that I really don't know how long we will get to Liv with Liv. How can I prepare for this? Does anyone know? Is this even possible? I can rely on my faith and give an eternal perspective, but it still doesn't make that worldly hurt go away. It's really just not fair. To be completely honest, I've been thinking about Livia's next birthday. She will be 5 in February. Most of the material or facts on MPS say that life expectancy for children with this disorder is 10-20 years. This next birthday will mark half way to what could be her life expectancy. What parent is suppose to even think about something like this? It's horrible and it's something that goes through my mind. Now I know, and many people are thinking this, no one knows how long we have. But reality is, I have a glimpse of Livia's future and I can't ignore it.

My heart and prayers go out to the Ferguson family. I'm so sorry for your loss of your beautiful daughter, Rachel. I pray that you find comfort and peace in this difficult time. Rachel was and is now an angel LIVing in peace for eternity.

Rachel Ferguson

Guest Blogger

2011-08-30T11:16:00.003-05:00

I was asked a few weeks ago to be a guest blogger on another blog called Life After Sunday. I was so surprised, humbled, amazed, excited that someone, and a blog like this wanted our story. Part one is up now and part two to be posted on Thursday. This is a Christian parenting blog that is a part of a church in Boston, MA. Please take a moment to check out this BLOG <----- HERE, and maybe even follow it! Thanks for reading!

A stroll with my girls.

2011-08-29T13:44:00.002-05:00

For those of you that know Jake and I and where we come from, you know that we are small town, country loving people. Jake grew up in the country his entire life. He and his family had a small hobby farm which I've heard a lot of the "critter stories." From him showing chickens to stories of his mom rescuing anything on the side of the road and the disastrous rides home with Jake and some wild animal in the back seat with him! Love you Cindy! I grew up in town, but on the edge of town. I had a corn field in my back yard. My grandparents are (recently retired) farmers. My grandfather use to have cattle on his farm, but my memories are just of corn and soybean farming. I have so many fond memories of being at my grandparents. I still to this day think it's one of my top 5 favorite places on earth. So, this is just a little background for this blog.

This past weekend, we went to central IL. for the first annual Liv to Ride poker run. It was hosted by the 4-Way-Saloon in Sidell, IL. My brother and sister in law, along with a lot of other hard working individuals put together this event with all the proceeds going to the Liv Life Foundation. It was such a fun day. We met a lot of fun and interesting people. New Twang City brought their band and played that evening. So, Jake and I and the girls stayed at George and Cindy's house while we were home. They live on at least 5 acres but don't know the exact amount. Sunday morning was so beautiful that I took the girls outside for some fresh air and to do a bit of exploring. The property has some restored prairie with a path to a pond. Typically we take rides on the path, but I wanted to just walk with the girls and our dogs. I had a moment while being outside with the girls. Finley was walking behind me pointing out everything she saw. She asked me if we'd see butterflies and what color the flowers were. Livia was ahead of me running with our dog, Lola. She was laughing and giggling so much. Let me back track for just a moment. Jake and I have noticed over the summer a few changes in Livia. She has been chewing a lot more and her speech isn't around as much. She's still talking, but we can't get her to say some of the things she use to. She doesn't point to pictures, as much, and tell us what she see's. So, back to the story. As Livia is giggling her way down to the pond, she would periodically stop and look back at me. She'd look and say "come on, mama....come!" To hear her laugh, watch her have freedom, and hear those words was an amazing moment. I say watch her have freedom because I feel like whenever we are out or even at someone else's home, I'm constantly corralling her or directing her where to go. It was so nice to watch her just run and do what she wanted. I was also amazed at what Finley could recognize and what she was telling me on our stroll. It was such a nice morning that I got to spend with my girls. It was one of those moments that made me reflect on where I came from. Growing up in a small town, I always wanted to move away. There had to be something bigger and better out there. I think this is probably a very frequent thought among small town kids. I so badly want to have that country life for my family. Mostly, I want Livia to have some freedom and be around what she loves the most (animals). Jake and I hope to provide that for them. I want to experience many stroll's like that and make great memories with them.

Because this is who Jake is................

2011-08-03T08:26:00.008-05:00

My girls are so lucky to have Jake as their daddy. I always tell him that the girls constantly look for him when he's not around. Jake plays with the girls differently than I do. He runs through the house with them, throws them in the air, bounces them on his knee, dances to the Wiggles with them (ok, I do this one too!), and just plays and plays and plays. He will drop whatever he is doing to give them the attention they desire. I admire this so much about him. I find myself telling them, "in just a minute" OR "I need to finish what I'm doing, and then I'll play." Now, I know that being a stay at home mom I have things I have to do around here to keep this house functioning and I can't give 100% of my attention to them. I just love watching Jake with the girls. Here's an example.

Yesterday, Jake returned home after 2 days away at a conference. He got home around 3pm. He really needed to mow the lawn. Finley was awake when he got home and was so excited to see him. He changed his clothes and told us of his plans. Finley insisted that she mow, too! Jake said, "OK, let's go." I changed her clothes, put SPF on, and out they went. He asked her what mower she wanted to use, and on they went. It was so hot, and I was worried that they would get over heated. I came inside to get water and grabbed my camera. Here is what I captured. As you'll notice, Finley got tired pretty fast but really wanted to keep going. Jake could have told her that if she wasn't going to mow on her own, then she needed to find something else to do. But, because this is who Jake is...........he helped her, to keep her with him and happy. This was a sweet moment!

Reminder

2011-07-21T12:47:00.003-05:00

Today is day 6 away from my girls. This past Saturday, Jake drove the girls half way to meet his mom and dad to drop off Liv and Finley for the week. Tomorrow, Jake and I will drive to central Illinois to meet them and stay home for another week. This past week has gone really fast. The anticipation of "getting a break" from the everyday schedules and routines was very exciting. I was looking very forward to getting my own time, getting things done, spending time with Jake, and eating meals in an un-hurried fashion. I started to miss them on day 2. I realized that as hard as my everyday life can be, I wouldn't trade it for anything. My girls bring so much joy to my life. They really give me purpose and drive. When they aren't here, and I have so many ideas of things I'd like to do, I catch myself sitting on the couch watching a movie. Now, this is nice to do occasionally, but not day after day. I have gotten a lot accomplished with the foundation, with help and direction from Ed. This is different. When it comes to the foundation, as hard and overwhelming as the work can be, I've never been so determined and focused to accomplish something as I am with Liv Life. I know this is my calling. To be completely honest, when things were hard or confusing to me in the past, I'd find any excuse to run from it. I never had the confidence or know how to want to figure out what I didn't understand. Typing this and re-reading the previous sentence make me really sad and embarrassed. On the other hand, it gives me complete confidence and reassurance that I'm doing what I should be. I've never been so "on a mission" before this. Not only with the foundation, but I'm learning how I want my children to be raised. I'm reminded that God chose me to be Livia and Finley's mom. God chose me to start this foundation. I feel affirmed. I'm also reminded how much I love my girls. I don't like or want to be away from them. They both bring unique newness to my life, if that makes sense. I've heard people say that they relive their life through their children. I feel like my children have given me new eyes. I see and feel life differently because of them. Just like with the foundation. I would have NEVER, in a million years, thought I would be running a foundation, and liking it. Writing a blog and hearing that my words impact others. Even being a mother. This isn't how I imagined motherhood. Honestly, it's better. It may have more work and more heartache attached, but it's mine and it's comfortable. This break and reminder has been great. I appreciate this time to gather my thoughts and re-focus. I'm so excited to see my girls tomorrow. I'm excited to keep working on the foundation. I know good things are in store. Be reminded that a break is sometimes all you need!

Volleyball Benefit

2011-07-19T07:02:00.002-05:00

Our cousins, The Black's, organized a volleyball tournament to benefit our family and help with some of our medical expenses, bills, and costs. They put in a lot of hard work organizing the tournament, getting prizes, food, and of course players! It was such a wonderful gesture of help and love. Unfortunately, Livia got sick once we were at the tournament. She, myself, my mom, and Finley left shortly after we arrived at the Mad Hatter tournament. Jake was able to spend the day and was even able to step in and play, which I know he thoroughly enjoyed. We had a lot of family volunteer their time to help that day. We want to thank everyone that organized, played, volunteered, donated, and helped out. The money that was raised at this tournament is nothing but a blessing and we are so appreciative of every cent. It will help us to pay a few of our medical bills. Please watch this short video that Glenn Black put together from the photos that he took during the tournament.

Volleyball Benefit from G Black on Vimeo.

7/8/09

2011-07-09T06:06:00.004-05:00

7/8/11 marked our 2 year walk with Sanfilippo. It's hard not to re-live that day. It's hard not to re-visit those emotions we experienced. It was devastating. However, I also remember our friends and family that rallied around us. Finley was baptized soon after we got Liv's diagnosis. I can remember sitting in church, tears streaming down my face, and Jake making the announcement to the congregation. I felt all eyes on us. I remember the accapella group, Sweet Adeline's, signing that day. That was the first time I started "feeling" music. Shortly after that date, we had a laying of hands on Livia at George and Cindy's house. I'd never experienced anything like that before. It was comforting to have our family surround us during such an unsure time. Susie Burwell, our pastor's wife, gave Livia a painted stone that came with the word "healing" on it. This marked the beginning of Livia receiving prayer shawls, blankets, dolls with knitted clothes, angels, books, cards, and other things that I'm leaving out. The point is, it marked the time in our life when everything changed. We had to start living a new "normal." Our focus changed for our children. Our Faith started taking the wheel, and the words compassion, perseverance, generosity, patience, and determination took on entirely different meanings because we were and are........ LIVing it.

This 2 year Dx day, emotionally, is hard for me. As much as I'm fueled to fight for Liv's Life, the everyday mommy can't help but re-live that heart ache. As much as I wish I could take this away from my beautiful baby, the fact is, I can't. However, I can take care of her and give her everything I can. I want to provide a life for my girls that will make a mark in their legacy.

Embrace

2011-07-05T21:38:00.002-05:00

It's once again the little things that mean so much to me. Nowadays, it seems like I'm constantly observing. I'm a "watcher" by trade. It seems that I intently, and constantly, am observing what my children are doing. I especially keep an eye on them when we are out of our comfort zone (our home). I'm so nervous when we are out in public, at someone else's home, or somewhere that Livia can get into something she shouldn't. I'm also very nervous when she interacts with other people. I'm nervous about how they will respond to her. I'm always very quick to explain to people that may not know Livia or her situation that she just doesn't understand personal space. You see, Livia is very loving and affectionate. When she likes someone, she's hooked! I'm always so grateful when someone pays Livia the attention that she is looking for. When someone takes the time to play with her and talk to her like any other child, is golden. It warms my heart so much when I see compassion come through and I can step back and let Liv be who she wants to be. To see my child embraced for who she is, is all my heart desires.

Balance?

2011-06-30T20:09:00.004-05:00

Today I took Finley to her 2 year well baby appointment. A little late, but none the less, we got the appointment done! It was really nice spending some one on one time with her. I have to say, her personality is getting better and better. She is hilarious, and I think she knows it. Anyway, as we were waiting in that child friendly waiting room, I was filling out the questionnaire about your child's development. I was breezing through it, reading some of it to Finley (her latest favorite line is "what are you doing?") and it took me back to when I had to fill out the forms for Livia. At the time, I didn't know any better, but today I can remember sitting in the waiting room filling out the form for Liv questioning some of the questions. Asking myself, does she really do this? Well, kinda........ maybe? I think I've seen her do that once. I just thought it was normal to have to think about the questions. With Finley, there were no questions. So then the appointment. Our nurse practitioner, D, who also see's Liv, came in to greet us. Finley was so excited to see her and insisted we were there for a haircut, not a Dr. appointment. D asked Finley a series of questions, usually laughing after Finley's response because it was so on point and cute. She had Finley perform a couple tasks, like drawing some shapes and making a light go on certain spots that D cued. After this was all finished D told me how advanced Finley was for her age. She said that her speech was way ahead of where it should be. She told me that the tasks Finley were able to accomplish, most 2 year old's could not. She then said that Finley was extremely intelligent and I should be very proud of her. Finley then told D that we were going to go have Red Mango. It was a very good appointment and made me feel extremely blessed and fortunate. It also made me think about the balance in my life. Balance? A state in which opposing forces harmonize. Now, I, by no means view my girls as opposing forces. However, I couldn't help but reflect on these two very different Dr. appointments that I experienced this week. I felt like I was on both ends of the spectrum with them. Livia, who is developing well, but differently, and Finley who is ahead of the game. I couldn't help but think about balance. Imagine a scale. One side of that scale says MPS. The other side says typical. I thought about how my life would look if the scale only had MPS on one side or vice versa. If the scale tipped with only "typical", how would my life be right now? Would I be recognizing and celebrating every small development that Finley is making? I'm talking about the things that people might take for granted like using silverware, blowing bubbles, walking by my side in the store without running away, throwing away garbage, chasing butterflies in the backyard, or initiating our "beautiful" game. This is hard to say, but, I wonder how mindful I would have been with everything. Would I be living everyday with such purpose and drive? I wouldn't get to feel what raising an angel on earth feels like. To know that my 4 year old is changing lives in her own special way. What if the scale tipped with only MPS? Would I have as much hope and faith? I know I would still have the strong drive to make our foundation a success. Would I be afraid of the future? I wouldn't get to know what typical feels like. To know how blessed I am to have a miracle like Finley and watch her grow in a typical matter. I guess what I'm trying to say is that I feel like my life is balanced with having Livia AND Finley. I get to experience things that most people don't. MPS has balanced my scale by giving me patience, faith, compassion, and love. Typical has balanced my scale by bringing normalcy, perspective, hope, and love. I'm sure the scales in my life will be asymmetrical at times with both aspects having the ability to bring that balance back. Each of my children bring a lot to this journey of life. I feel like I'm in a unique place and God has intended for me to find this balance.

Romans 12:2 "Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect."

My prayer today will be the same as always, that God's will will be done. I pray that someday I hear as said in Matthew 25:23 'Well done, good and faithful servant! You have been faithful with a few things; I will put you in charge of many things. Come and share your master's happiness!'

A good report

2011-06-28T15:09:00.007-05:00

Livia and I ventured into Chicago today for her every 3 month check-up with the geneticist. Liv was in a great mood, and I credit that to having some one on one with mommy, the sun shining, getting to watch what she wanted on the DVD player, and a little singing with what mommy wanted to listen to on the radio! Going to the geneticist for a "check-up" is like going to the pediatrician. They check her in, we wait in the child friendly waiting room, get called back, check height, weight, bp, pulse, respirations, all the norm. Questions are asked about how she is doing and if we are noticing any changes. I had nothing to report. I put a urine bag on her to catch a sample while we were there. (I guess this may be out of the norm, but it's norm for us). I casually talked with the genetic counselor about the latest MPS research. Dr. Burton came in and doted over Livia, like always. She always says how pretty Livia is and how lovely her hair is. It's so nice to hear. Having a Dr. that keeps it light and real is so refreshing and encouraging. We've encountered physicians, not many, but some, that treat my child like she is a number or just a patient on a piece of paper. This is not so nice. The appointment was short and sweet, and then we made our way down to the lab. Livia has to have her blood drawn at each visit to monitor how the Genistein is treating her system, monitor her overall health, and we send a sample to the UK for a study. Livia has never cried with one of these blood draws. I'm sure the numbing spray helps, but she's a trooper and is so brave. Being at Children's Memorial is not a place that I envisioned spending a lot of time. However, we do. There are a lot of people there at all times. Families that are dealing with some tough things regarding their children. I see all types. I see children that are non-functioning, have tubes coming out of every orifice of their bodies, children with no hair, and some that are just beginning their path of diagnosis. As parents, there is an unspoken, glance of the eyes in passing, of compassion. At least I feel this. Being amongst others who are going through something is somewhat comforting. A feeling of, I'm not alone. There is someone else out there who understands what I'm going through. Not that others don't show compassion to what we are going through, because we certainly have A LOT of friends and family that lend that support. It's another family who wants to take the time to get to know my child and not care that her Barbie's feet are chewed off. Siblings of affected children who have learned so much compassion in their own short lives that I admire and respect. Today, getting a good report regarding my child made our visit positive. Looking in the eyes of other parents going through tough times made me re-visit our blessings. I'll be saying an extra prayer tonight for those families going through some really tough times.

First annual Liv Life Golf Outing

2011-06-08T11:15:00.004-05:00

This post is a little over due. The first annual Liv Life golf outing was June 20th. It was more than a success! My dad, Jim Fish, and step-mom, Carol Zuhone-Fish, were the organizers/prize-getters/phone call makers/event coordinators of this fund raising event. With all the hole sponsors, silent auctions, raffle tickets, and donations the Foundation grossed $12,000 and netted $9,000. This was so much more than we expected. Our goal was to get 18 teams and ended up with 16. The weather was so perfect for the day. The event was held at the U of I Golf Course in Savoy, Il. The day provided 18 holes of golf, lunch, 3 drink tickets, snacks, gift bags, dinner, and a t-shirt. There was a chance to win a car with a hole in one. Unfortunately, no one won. We had A LOT of items donated for prizes, gifts, and the snacks were donated. We had an awesome banner donated to the foundation. I think the event was really well organized and generous! Thank you to dad and Carol for all the hard work, phone calls, meetings for prizes, etc. This was such a generous thing that you planned for the foundation. We look forward to having the event annually! Thank you to the Black girls for watching my girls that day. I wouldn't have had the opportunities to speak with people and sell tickets without your help! You ladies rock! Thank you to all our friends and family who gave their Friday to volunteer at the outing. Thank you to all the hole sponsor's, donor's, and businesses who gave money, time, or prizes. This was another great example of people's generosity and kindness. Keep an eye out for upcoming events and fundraisers! THANK YOU!!! To view the photos from the outing, please visit HERE You will have to create a sign in and password.

Worse off than me?

2011-06-03T14:27:00.003-05:00

All I've wanted to do this week is sleep. I've been very tired, and I've been successful with actually falling asleep. I've been able to sleep during the day when the girls rest, which is very unusual for me. Sleeping at night has not been a problem at all, and I'm ready to sleep at 8pm after a nap in the afternoon......which again is unusual since diagnosis. I'm thinking that this may be one of the many coping mechanisms that I have and will experience since Livia's diagnosis of a terminal disorder. Some of the other coping mechanisms that I can recognize are; running/exercising, not eating, art, eating in an unhealthy manner, sleep, no sleep, avoidance, and creating our foundation. Not all of these are bad, but some certainly are. We all have bad habits, right? I think I may be experiencing another stage of the "stages of grief." There are different models out there of what the stages of grief look like. One of the most common list's the stages of grief as 1. denial 2. anger 3. bargaining 4. depression 5. acceptance. When you experience grief, apparently you follow this list as your emotions of dealing with a loss/tragedy/significant life event/illness/etc come about. The ebb and flow of my emotions have caused me to experience some of this list at different times and not in order. I feel like my sleep induced stage this week has been a coping mechanism to anger. I'm not angry with my children, I'm angry about what we are going to have to face. Not that I'm thinking about Livia dying, even though that is the forefront of my thoughts, but angry about the decisions that we may have to one day make. I'm angry at the circumstances, financially, that this has and will continue to burden my family with. I'm angry that we, educated and well employed people, aren't able to find any kind of assistance out there for this financial burden that we are facing. Can someone just please but me a stink'n pack of diapers? PAUSE and BREATH.....sorry about that. I'm not looking for someone like you who is reading this to send me a pack of diapers. That's not what I'm getting at. I'm just angry that a family like mine who are good contributing members of this society can't receive any assistance just because my husband makes a good salary. We are struggling to. I'm angry that I still have to change diapers. I'm angry that my child crys at times and I don't know why. I'm angry that I'm going to have to tell her sister one day why she doesn't talk like her. I'm angry that I feel so alone. I could go on, but now I'm angry because I'm crying. UUUUGGGGHHHH.....I kinda got off on a rant, but I feel like this blog is another coping mechanism.
Side note......it does NOT make me feel better when someone tells me or mentions to me that someone out there has it worse off than me. REALLY???? I really do love facebook, but sometimes facebook can be my worse nightmare. Yes, there are people out there that have terrible situations. They may never see their child walk, hear their voice, only have their child for a year or maybe only a couple hours, someone may have more than one child with a terminal disease, someone may not be able to have children, maybe they themselves are facing something really scary. Does it matter? This doesn't make me feel better.......it makes me even more sad. I want to reach out to them, know them, try to help them in some way. I really don't like to hear that someone has it worse off than me. Maybe it's true, but who can measure that, and who can say who's situation is worse? I'm sure not going to walk up to someone and say "HI, my name is Kelly, I hear your situation is worse than mine, can we be friends? Someone thought by you having a terrible thing going on in your life would make me feel better about the terrible thing in my life." Now, with that being said, I do appreciate and find comfort meeting people that have experienced or are experiencing grief. I know, it sounds very strange, but I do. I'm comforted knowing that I'm not the only mom, wife, sister, friend, whatever, going through those stages of grief. It's hard enough being here alone (without family), as well as feeling alone in this world trying to manage everyday with a child facing a scary future. With all of this being said, I really don't like this stage of anger. I'm not an angry person, and I really don't like sleeping when the sun is out, and both of my girls hair sparkle in the sun. I'm thinking it's time to move on from this week, pick myself up, and know that everything is in HIS hands. I shouldn't complain to much. I have a husband that has a great job and who loves me to death, and two beautiful happy girls that are waiting to splash in our new pool. Bring on summer and bring on a new mood! Thanks for listening!

A Nudge

2011-05-19T11:35:00.002-05:00

{OPTIMISM} a disposition or tendency to look on the more favorable side of events or conditions and to expect the most favorable outcome.

anticipation, assurance, brightness, buoyancy, calmness, certainty, cheer, cheerfulness, confidence, easiness, elation, encouragement, enthusiasm, exhilaration, expectation, good cheer, happiness, hopefulness, idealism, looking of the bright side, positivism, rose-colored glasses, sureness, trust

These simple words have BIG meaning to me. Having an optimistic attitude truly creates peace, reduces stress, and gives you an all around happy life.

I have been very encouraged, lately, by other MPS families and foundations that we are on the right track of doing great things. There is so much hope in the world of MPS right now. We pray that this hope will be in time for Livia's generation, but only God's Will will prevail. The plans He has in store for us and our children, I feel, are big. To know that we are on the right track, is a great place to be. To feel positive about the hard work ahead of us, to make a difference in other children's lives, is an anticipation of constant gratification. My desire with our foundation is of course to help fund a treatment for Sanfilippo Syndrome. Let's just say, a treatment is found and administered in, oh, say three years. Then what? I envision our family spreading our story to other's in hopes of inspiration and support. To know that whatever they are given in their life, there are people who will stand by them and help in whatever way possible. Maybe we will get to a point where we can help support families with medical expenses or equipment. Yesterday, as I was trying to shut my eyes for just 20 minutes, I felt a nudge and a whisper. My heart was telling me, Kelly, there is no time for this, you have work that needs to be done. Before, when my mind would wonder when I was trying to rest, I would get very annoyed that I couldn't just turn it off. This time was different. I compare it to really loving your job to really hating your job. When you hate your job, you find every excuse/complaint during your day. It's hard to get up in the morning and go to a place that you just don't enjoy. When you love your job, it's effortless. It makes every aspect of your life better. So what I'm trying to say is, I'm really loving my job right now. I feel like I've found my place. I feel like I'm on the path that was set forth for me. My heart is in what we are doing. To me, this is optimism..........and it's synonymous to what Liv Life is all about!

May 15th, 2011

2011-05-17T20:57:00.003-05:00

MPS awareness day.......................a day to tell people about our kids, here and in heaven. There are so many creative people in the MPS world. Creative in the sense of how to spread awareness. Last year we had business cards made, attached purple suckers (if you haven't guessed by now, purple is the color represented for MPS) and handed them out to the community. I really want to do something more next year. I want to get our church and schools involved. I'm seeing a balloon launch or something fun like that. I think if would be amazing to do a month long awareness at our church and then the weekend of the 15th have the entire congregation in purple. Just a few ideas, and we'll see where the year leads us.

This year, I challenged friends and family to wear purple on May 15th and tell people about Liv and MPS. I then asked them to send me their purple pics. Something this simple, and yet I'm so touched by the support. People's generosity gets me every time. Generosity doesn't always come in the form of a dollar. Generosity comes in joining in on a challenge, giving words of encouragement, offering support, or just being there. A dollar here or there is nice, but it's not always what generosity looks like. I can't explain how important these small gestures are to me. I can't imagine going through this feeling alone. Knowing that we have friends and family that will stand by our side and take pictures in their purple clothes really means the world to me. Enjoy the purple collage and I'd be happy to take suggestions for next year's awareness day! LOVE YOU!

Just when I needed it the most!

2011-05-09T11:48:00.002-05:00

Having a foundation, a blog, organizing events, being a mommy, being a wife, doctor's appointments, natural history studies, being a friend, email's, etc. etc. etc. This is my life. At times, I can lose momentum having so much on my plate. Some days, I want to give up. Being overwhelmed is not a fun emotion. It's a vulnerable place where Satan can easily walk into my life, whisper in my ear, and encourage me to just give up. Some days, 24hrs just doesn't cut it to get everything done that I feel needs to get done. When I know I have an event coming up, I try to schedule (in my mind) everything that needs to get done. I'm focused and determined to do it. The end result is what I'm working for. Awareness, funds, maybe inspiring someone along the way. Then it's over. The encouraging words, being gathered with intentional and generous people. It's all so uplifting. But when it's all over and everyone goes their own ways, I feel almost a let down. Not from people and their generosity, but from all the momentum leading up to the event.

Then inspiration comes just when I need it the most. I had the honor of having a chai tea latte date with Tasha Ives. She is someone that I've wanted to meet for a very long time. When Jake and I first started going to Rockford First is when we learned of the beautiful Ives family and their daughter, Sydney. Sydney, at the age of 10, was diagnosed with stage 3 inoperable brain cancer. She won her battle against this cancer 18 months later and went home to be with our Heavenly Father. She is now "Living In Peace" in our eternal home. Their story and foundation information can be found @ http://sydneyives.com/ Please take a moment to learn about this family and their foundation. So, meeting with Tasha this morning was just what I needed. She gave me insight and almost a boost of that momentum I was talking about. To meet another strong mother that has had a difficult journey, that could advise me as well as share a Faith with me, is something that can help me thrive and inspire me to accomplish what we've set out to do. Our situations are different, yet the same. We may not go through the same motions, but we may share the same emotions. That support brings me a lot of comfort. To have someone who is open and willing to let us in, is an amazing gift and blessing!

Things always have a way of working themselves out. I know what will get done will get done. My heart is in what we are doing, and knowing God's Will will be done, can help me accomplish these goals. I hope the beginning of this post wasn't whiny. I have no desire to quit our foundation or our events. This is only the beginning of what I feel like is going to be something big. Thank you, Tasha, for this morning. Thank you for your insight. I look very forward to seeing your foundation grow and working with you in the future. I also look forward to getting to know you and your family. It's nice to meet another sister in Christ!

Dedicated to the Ives family!

Small accomplishments

2011-05-05T06:44:00.003-05:00

My Finley Faith will be 2 on the 13th. She is growing and changing daily. She makes me laugh more often than not. One of the traditions I've started for her is to write her a letter for her birthday. My plan is to give them all to her when she is 18. I'm starting to think about that letter and what I want to put in it. This second year of her life I feel like I've really bonded with her. The first year of her life, I think I was in a time of mourning. Not over her, but she was 8weeks old when we got Liv's diagnosis. Finley's infancy, {this makes me so sad}, I feel was taken from her and me. I can remember holding her or feeding her, and watching Livia play, and just sobbing. Of course it took awhile to find out tjat Finley did not have MPS, but in my heart I knew she would be just fine. I can honestly say, I didn't really worry about her having SS. I refer to Finley as my miracle. I look at her everyday, at least once a day, and literally stop and pray my thanks that she is mine. Even if she is throwing the worst tantrum, I think to myself, at least I get to experience it.

This blog was sparked this morning from Finley asking me for some "wa wa" aka....water. She's gotten to the point where she really loves drinking out of a small plastic open cup, not a sippy cup. She gets so excited when I pull one out. Her favorites include a Hello Kitty cup, and a Disney Princess cup. She will choose which one she wants. She then squeals in delight. As I was pouring her water, the mixed emotions came flooding in. I was so proud of Finley for reaching this small point in her growth, yet it made me realize that she is/has gained on Livia in development. Livia is doing really well, but there is no way I could give her an open cup without a mess to follow or me helping her through her breakfast with it. These small accomplishments are really big in my world. Who would have thought that drinking from a cup would warm my heart and make me so sad all at once.

Both of my girls are such blessings in my life. They have helped me become the person I'm proud of today. I feel like I'm fortunate to be aware of these "small accomplishments." I don't let even the small things go by without a notice. Livia Grace, Finley Faith, I love you more and more each day! Thank you for being mine!!! xoxoxoxoxox

History and Leaving a Legacy

2011-05-02T13:33:00.007-05:00

We are all writing our own stories. The stories of our life. The truth is, one day, we will all pass away. Heavy, I know. I'm sure I've lost a lot of readers already. But, if you are still reading, please keep going, because I'm sure this will make you think~ What will people say about me when I'm gone?

This past Sunday I spent the morning with my dad, sister, aunt, uncle, and two cousins at my Grandma and Grandpa Fish's house. Grandma died in November, so my aunt and dad are in the cleaning out phase. They asked us to gather together to sort and pick out any items that we'd like to keep. When we arrived at the house we found my aunt sorting through all of my grandma's jewelry. She was matching earrings, laying out bracelets and necklaces all along a bed. We admired the pieces recalling items that we remembered or remembered her wearing. There were dishes to look though, furniture, old pictures and albums, table clothes, crocheted doilies that we had fun trying to guess what you did with them, and the list keeps going. We took turns picking items that we wanted to keep. Going through the house and still smelling like grandma and grandpa's house really brought back a lot of memories. For me, the emotions didn't really hit until I got home and started washing the glass pieces that I brought back with me. Everything that I was touching had history. Where did it come from? Were some of the items passed down from past generations? It made me think about my grandparents legacy and how proud I am of where I come from. It also made me think about my story and the legacy I want to leave. I put away the beautiful glass pieces in my china cabinet, washed up the doilies and took the jewelry to my room. I picked out a doily that fit on my dresser underneath my jewelry tray. I started to go through the jewelry from my grandma's, matching the earrings again and trying on the rings. That's when the tears started. I missed them. I wish I could go back and tell them so much. My grandma, no matter what, even a couple days before she passed, had a smile on her face when I walked in her room. Her generosity and beauty is her legacy. My grandparent's legacy is a good one. The stories I hear from my dad and aunt are good. I learned this weekend how much my dad loved his mom. She spoiled her grand kids, but I think she spoiled my dad just as much. Not only with "things," but real love.

This journey called life is nothing like I planned or envisioned for myself. Ironically enough, I think it's become better than I could have ever expected. I say "ironically" because how can I think that when my baby has a terminal disorder? Well, it's because I've found through this tragedy who I am, what I believe in, and what I'm capable of. I've learned how important it is to write a story that is positive and inspiring. I want to leave a legacy for myself, my children, and my future generations that is going to spark something in them.

I wanted to share a few pictures of the items that I took from my grandparents home. I'm getting some furniture and a set of china that are not in these pictures. It's hard to say which item I will treasure the most. They all have a great story, but I want to share one with you. My dad hasn't kept a lot from the house. Only the items that really have meaning to him. He told my aunt that he really hoped we would pick this one thing. He wanted us to have these glass banana split dishes. He loved them so much and had great memories of them. My sister and I split them and can't wait to make our own memories with them. My dad is bringing me the furniture in a few weeks and we will be having banana splits when he visits!

Give Love

2011-04-18T12:23:00.007-05:00

This past weekend I had the privilege to attend a woman's conference at my church called Original. It was an inspiring weekend full of beauty, God, celebrating being a woman, inspirational speakers, and being with my intentional friends! The end of February I was on the Original website scoping out the specs of the weekend. I came across the part entitled Give Love. The idea behind Give Love was to see a blessing put in someone's life that has influenced you in some way. Along with myself nominating someone, I had to include three other people. The end of Feb, I had just spent a quick visit with my friend, Stefanie Boyce. She was at my house for a brief time, and was having a hard day. Once again, Stef left my house inspiring me and lifting me up. Even in her time of hardship. So, it was the next day of so when I came across the Give Love process. Stefanie immediately came to mind and I got busy in the application process. Three of her friends instantly came to mind. Katie Henry, Angie Devore, and Andrea Bercos were contacted right away and they were on board and excited about the process. All of this had to happen ASAP because the application was due by the last day of Feb. I think I gave them a day or two to get it done. I handed the application in the last day of Feb. We all had to write a little something about our friend and why she deserved it. That was the easy part. We also had to nominate her for something. This was the hard part. We couldn't settle on just one "thing." I nominated her for 4 different things thinking that if she was chosen, the Original leaders could help us in the choosing of the "thing." During the week that I was home (central Il) for my speaking events and news appearance, I get a call from Lisa Yonke, one of the Original leaders. She told me that they would be honored to have Stefanie blessed at the conference. AMAZING! She also asked if me, along with the other ladies that nominated, and Jut, Stefanie's hubby could be at the church Tues afternoon for a video interview. It just so happened that Jake, the girls, and I were heading home that Tuesday. I quickly called the other ladies and Jut, told them what was in the works, and if they could get to the church. Long story short, we all make it to the church and made an amazing video (see below). Andrea Bercos decided to attend the entire conference. She was at my house for the weekend. It was so nice! The other ladies, Katie and Angie were in charge of getting Stefanie to my house Friday evening and not really letting her know why. This was all to be kept a secret from Stef. They successfully got her to my house. She knew we were up to something and tried to get it out of us, but we all stuck to our guns and told her to just trust us. We got her to the church, and I think she was a wee bit disappointed we weren't going to get mani's and pedi's. Not that she wouldn't want to be at the church, just that our time together was going to be short and maybe we would be doing something different. So, we listened to the first speaker, Nancy Alcorn.......AMAZING! Then there was a short break, then Give Love. The Original ladies started presenting gifts or blessings to people and families. The gifts kept getting bigger and better. Oh, I should say that we didn't really know what they were going to give Stef. Lisa kinda led on to a few things to me, but never said anything definite. So, they announce the final nominee as "The next story is one of true Faith and inspiration." The lights go dim, and our video (see below) starts to play. There on the 3 big screens is Jut, I look over at Stef and she is crying. After the video is over, they invite all of us on to the stage. They talk a little about Stef and start presenting her with her blessings. The first was a small wicker basket filled with some bath pretties. They then told her she and Justin were getting a spa get away to Sundara spas in Wi. The basket also contained $500 in Visa gift cards. They then presented her with two rather large Easter baskets for Jayden and Brooklyn. Then came a $300 gift card to Ingrasia Furniture for something for their new home. Then the whopper. Out came a BIG cardboard check for $2,500.00. WHHHEEWWW! I thought it was over at this point. However, to my total shock and complete unexpectedness, they started talking about me. She said, "Here is Kelly, unbeknown to us, until the interview process, did we know that Kelly's oldest daughter has the same thing that Stefanie's children have. She could have wavered and hoped that someone would nominate her, but instead she nominated her friend." They then started presenting me with blessings. I got the small wicker basket with bath pretties, the same vacation for Jake and I, $500 in Visa cards, and two HUGE baskets for the girls. WOW! How generous! I'm still in shock of it all. I was so excited to do this for my friend. It was so easy to do because I love Stefanie and her family so much. I really feel like this is where my heart is. I want to have a giving and generous heart. I want others to know my extreme love for people. I'm ready to sign up to help with Give Love next year! So, it's not over. After we get off the stage and they dismiss us from the conference, Stef and I get bombarded by people. Words of encouragement, hugs and kisses, extreme love from total strangers. A complete blessing. Then, one of the pastor's wife comes up to me with this older lady with tears in her eyes. She introduces us and the woman pulls me close to her and tells me she had a son that passed away in the 80's of the MPS disorder, Hunter's syndrome. She comforted me and gave me encouragement. WOW! Then, another woman comes up to me, asks me my name, pulls her check book out, and with tears in her eyes tells me that she has been extremely blessed in her life and wants to bless me. She writes me a personal check. It's another experience of people's generosity and complete selflessness that awe's me every time. I wish and pray that more people could experience something like this. Not necessarily getting something (not that it isn't amazing) but to experience giving is such an amazing thing. I'm so happy for Stefanie and what she received. What a great end to an extremely busy week. Before you watch the video, please pause the music player so that you can hear the video. Love you and GIVE LOVE! CLICK HERE TO WATCH VIDEO!

Natural History Study, Round 1

2011-04-08T06:54:00.003-05:00

Another busy week ahead of us. We (the 4 of us) are traveling to Central Il today after Jake gets off work. Then, on Sunday, Livia and I are flying out of Bloomington to be a part of the Natural History Study being performed at the University of Minnesota by Dr. Whitley. We will be there until Thursday morning. When we arrive home will be the start of the woman's conference at our church. Very excited for this. Anyway, the study is a very important thing in the world of Sanfilippo. Not only for our generation of children, but for the future of Sanfilippo. Our hope is that one day when children receive this diagnosis it won't be followed with the word terminal. Not only is this study beneficial for learning more about the disease process, but it is also a requirement of the FDA in order for a treatment to come to the United States (in respect to what is currently being done in the UK.) The days will look like this. We arrive Sunday and settle into our hotel. Monday will be a day of meeting the physicians and signing consents. Jake will fly in Monday evening to meet us. Tuesday we will be meeting psychologists, meeting with audiologists, and more physicians. Wednesday, Livia will be under anesthesia. They will replace her tubes if need be, perform an ABR, MRI, echo-cardiogram, and a lumbar puncture. The lumbar puncture is the only "new" procedure that she's never had. Livia has to have all of these procedures through the year, maybe twice. So, not only is this part of our regular schedule of procedures, it's also being paid for. Livia's physicians and geneticist at home will all be getting the results of the procedures. The other families that I've talked with that have gone through this study said that everyone was very accessible, knowledgeable, and friendly. On a side note, I am looking forward to spending some time with just Livi~Lou! The hotel has a really nice water park that we are going to try out one day. Jake and I looked up diner's-drive in's-and dive's last night and we may venture out and find a neat place to eat. Please keep us in your prayers as we travel, prayers for meeting new people, prayers for knowledgeable and friendly staff, and prayers for Livia being patient, brave, and safe! I'll have my computer with me while we are there, so I can keep everyone up to date. Round 1, here we come. There will be a round 2 and 3, keep an eye out!

4 simple words

2011-04-07T12:47:00.003-05:00

I never thought I would be so moved by my children's words. When you have a new baby and they start babbling, it's always so exciting. Then the first words of mama, dada, and more start to come. This all happened for Liv, but she never really formed any sentences. Her speech, to me, is fairly good. I understand a lot more than what other's do. But I'm mom! There are times when she puts 3 to 4 words together, and I cling onto those sentences like you wouldn't believe. I'm fearful for the day, that I may not hear her precious voice anymore. She love's to sing "Happy Birthday," "Twinkle Twinkle Little Star," "ABC's," and a few more. When we were home last, she gave me the impression that she needed to potty, and was maybe having a hard time going. So I sat her on the potty and clear as day she said to me "I WANT TO POOP!" My mother in law, Cindy, heard this, and we celebrated these words. I never imagined I would be so moved by my child telling me she wants to poo. Finley's speech is getting better everyday. She has passed Livia up in her verbal abilities. I listen to her words (Finley's) with more focus because her words, hearing them, mean so much. It's kinda like the saying, you don't know what you had until it's gone. Not that I don't have Livia's words, but I can appreciate their voices a little more because there is that chance I won't have Liv's words forever. So, this morning as I was getting Livia ready for school, I told her that I loved her very much. Without a prompt from me, she looked me in the eyes and said "I LOVE YOU, TOO." These 4 simple words have radiated in my mind all morning. It's something so precious and meaningful that I want to keep it forever. It was that moment that I knew Livia is doing really well. It was so perfect because it happened. 4 simple words that I hope isn't the last time I hear it. Listen to your children and know how fortunate it is to be able to hear them.

A Girl Scout Troop's Generosity

2011-04-02T15:09:00.013-05:00

Have you ever received something in the mail that makes you cry and cry and cry? Even if it's a box from a girl scout troop? Well, I have. Livia received a rather large box in the mail one day. It was filled with girl scout cookies, teddy bears for she and Finley, hair ties, pictures, notes, t-shirts, an official GS vest donned with badges, extra badges, and a GS tote with flip-flops. There was even a little gift for me, but that one is for me. Anyway, Heather, a school friend of mine is a Troop Leader to a group of amazing young ladies in Tuscola, Il. Their troop is #2336. Heather contacted me one day and asked about Livia and what kind of cookies she likes. She told me that she would like to tell her girls about Liv, our foundation, and what giving to us would look like. She really went above and beyond what I thought she might do. I think I was most touched with the letters from the troop girls and the badges that Heather had made. I got to see Heather when we were home last. She made the effort to come and visit with us during our Monical's fund raiser. She expressed to me how important it is to teach her young ladies the importance of giving. I applaud you Heather for instilling such an important value in these young women. I really feel like giving is such an awesome gift. I love doing it myself. Some days I wish I had more resources available to give more than I'm able. Through my life with Liv, and the experience of having our foundation, I'm learning what generosity really looks like. It doesn't always have to be money, items, or things of value, it can also be words or random acts of kindness. These, to me, are worth more than any amount of money. Knowing people are there for you to walk with you during your difficult times is what generosity means to me. Getting an email from a complete stranger telling me how our story has affected them, for the better, is generosity. Someone volunteering their help, is generosity. A random phone call or note in the mail, is generosity. Getting a goody box from a girl scout troop, is generosity. People loving me and my family, is generosity. I think everyone could benefit from doing something nice for someone else. Pick up the phone and tell someone how proud you are of them or that you are just thinking about them. Buy the car ahead of you in the drive up their cup of coffee.

One of my favorites:

Proverbs 11:24-25 One gives freely, yet grows all the richer;

another withholds what he should give, and only suffers want.

Whoever brings blessing will be enriched, and one who waters will himself be watered.

Thank you Girl Scout Troop #2336 for making a little girls day and learning what generosity is all about.

An ounce of perspective, a dash of humility, and a pinch of pain......

2011-03-02T11:59:00.005-06:00

Mix together, and surprisingly enough, you get peace. These last couple weeks I feel as though perspective has really been thrown in my face. The trials in my life have opened my eyes to what really matters in my life. I've chosen, which life is all about choices and how you will handle a circumstance, to really re-focus my heart. I know that I've always been a "good" person, but being in the world of Sanfilippo has really made me reflect on how "good" I really was. Before I dive in, this post is probably going to be deep but completely heart felt. It also might get long, but I hope you hold on until the end.
PERSPECTIVE~
Yesterday was a really big day for me. Emotionally hard and scary. A glimpse of what our future may hold. I attended the visitation of Steffany Barnett. Steff was 15 years old, and won her battle against SS. The same thing that Livia has. I say she "won" her battle, because she is finally free of her pain. She has WON her place in the Kingdom of Heaven, and because of that, she's won. Steffany lived in Bloomington with her mom Val, dad, Steve, and brother Stevie who also has SS. The Barnett's were one of the first local families that we met. They hold an annual family gathering in Bloomington. Val is one of the strongest and most compassionate people I know. She always has it together, and radiates peace whenever I'm around her. Steffany battled for the last three weeks, and her passing was to be expected. I knew that I wanted to attend her visitation to support Val and Steve. If roles were reversed, I know they'd be there for me. My drive to Clinton, Il was a blur. I was so nervous and scared to face them and to see Stef. What was I going to say to them, is this something I'm going to have to face, where is my faith right now? I tried to reflect on the fact that Steffany isn't suffering anymore, but the worldly hurt got in the way. Val said, "the purest love comes from non-attachment." I just can't imagine what losing your baby feels like. I always sense peace when I'm around other families with MPS children. You have to be a strong person, or choose to be strong, when facing SS. As I was getting ready for the visitation yesterday morning, I felt perspective again. My mind was filled with thoughts of the day. I was consumed. I turned the TV on and put Finley on my bed. I showered and starting thinking about "getting ready." What was I going to wear, how should I do my hair, what color eyeshadow, do I have waterproof mascara, on and on. I easily could have spent 2 hours getting ready. I then thought about Finley. Was it really worth spending all that time on "getting ready?" I decided it was more important not to let Dora the Explorer raise my child. So, I dried my bangs, let my hair air dry, and played with my baby. I finished getting ready while the girls were eating. I re-focused my attention on where I thought it mattered more. Perspective, I think so! Along with perspective, this also humbled me.
HUMILITY~
I like being humbled. Moments in my journey has created such humility, and again made me re-focus my heart. I'm humbled at people's generosity and love. As ugly as SS is, there is so much beauty surrounded by the families that we've encountered. I've met some amazing people along the way. Not only other MPS families, but people who have a genuine concern and want to walk along our sides in this life. I'm humbled by people's comments on my blog. Being humbled has introduced me to the ME I'm proud of. I'm discovering capabilities within myself that I'd never known I could accomplish. I love the idea's that are swirling in my mind. I love the feeling of wanting to help others. Being comfortable with myself is a peaceful place to be. I came across a saying that I love, "Be YOU, find YOU." I think I've found me, and it feels really good to know what matters to me, not be ashamed of what I believe in, and feel comfortable enough to share my thoughts. I'm also humbled by the fact that I have a loving and supportive husband. Jake has taught me so much in the few years we've been together. (8total) Jake has an extremely strong Faith. He loves his entire family. Knows no stranger, and is the biggest social butterfly I've ever met. He's the type that would give his shirt off his own back. I'm humbled by the fact that he chose to share his life with me. Through these last couple painful years, his love for us has never wavered.
PAIN~
"Pain and acceptance can co-exist in the heart to create peace." This was printed on the back of a bookmark that was at Steffany's visitation. It speaks mountains to me. I feel like it is my heart that has found this co-existence that is peaceful. There are moments of really bad patches where I don't know how we are going to get through this. Again, being humbled in the fact that I have my girls, and get to enjoy them today is peaceful. Standing in the visitation line, looking at all the pictures of the Barnett family was so hard and emotional. I felt like my heart was going to jump right out of my chest. I thought the person behind me could probably hear the lub-dub coming from my chest. There was even a picture of Steffany wearing a LivLife tshirt. I of course lost it. The anxiety of getting to Val and Steve was painful. It was the anticipation of knowing what to say and how they were really doing that was eating away at me. As soon as I got to Val, she embraced me, kissed me on the cheek and told me she loved me so much. She whispered in my ear how much she loved Livia and that we were going to make this better for her. She was comforting me, in her time of pain. How powerful, and humbling is that? That's who Val is, and who I aspire to be like. She was at peace and I could sense that. I embraced Steve and gave my condolences along with a little gift from Liv (that's an entire other story.) I thought that viewing Steffany's body would be the hardest part. It wasn't. I envisioned myself standing over her body weeping uncontrollably. It was just the opposite. Val's mom stood by my side and talked with me for a couple minutes about Steff and her passing. I was at peace knowing she was not in pain. I accepted the fact that she is no longer with us physically, but embraced the knowledge that we will see her again.
This road that we are on is so uncertain. It's uncertain for everyone, but choosing a life filled with happiness, fun, and love is where I know I want to be. I'm choosing to live a Grace filled life, and want to extend that to everyone I encounter. Steffany, you will be missed, but you are an inspiration in my life. I love you Val, Steve, and Stevie. My heart is forever grateful that you have allowed us into your lives.

For Steffany Eileen Barnett

Good ALWAYS defeats evil

2011-02-22T13:46:00.003-06:00

What a stressful morning. I wake up, early, like before one of the girls is up. This is rare. I start my computer routine and see a message from one of Jake's cousins. He informs me that www.livlife.us has been hacked. WHAT? I scurry over to the website and sure enough everything is gone and all I see is a white screen with some text at the top. The text said something like "hacked by ???XXX???, shout out to blahblah so and so." My heart, ONCE AGAIN, is in my stink'n throat. Are you kidding me? My mind starts racing thinking really mean and cruel thoughts of "who in their right bleepbleepbleep mind has the time, energy, or desire to do something like this?
I think it's pretty obvious what the website is about. I mean, the front page says "Join in the fight to save Liv's life." UUUGGGGGHHHH.......I just want to scream. I'm so mad, sad, and hurt by this. I don't think I've cried this hard in a long time. Fast forward through the morning. >facebook post about the website, comments of encouragement, me calling sis, mom, dad, Jake to vent and cry, receiving phone calls from caring friends, grammy, and aunt. Sending emails to web pro's that I know, crying, crying, crying. PAUSE. PLAY. Website is back up. My head is pounding, my eyes are throbbing and puffy. I should be resting. What I've learned from this: change my passwords, some people just don't care, prayers do get answered, I have a lot of people that are on my side, I'm not going to EVER get defeated like this again. I seriously was beat down by this. The website is our one arm that we can reach out into this world. How can someone just take that away from us? Well, for a brief moment in this day it was taken away. It rocked my world, but, it's back. Good ALWAYS defeats evil. So, in the face of a moment like this (if a moment like this ever happens again) I will choose to take a deep breath, find out my options and not jump to conclusions, and not be afraid to ask for help.

My ever~loving grandma sent this to me after our phone conversation. She received an email from one of her friends that had this verse in it. She said that she received that email for a reason and the reason was to pass it on to me. This is what it said~

Jeremiah 29:11 "for I know the plans I have for YOU, declares the LORD
"Never give the devil a ride, he will want to take over the driving."
Dear Woman of God
Be still for a while and praise God for His favor, His grace and His awesomeness
God is able to do the impossible and is always near
He loves us unconditionally.

Dear God:

this is my friend, whom I love and this is my prayer for her
Help her live her life
to the fullest.

Please promote her
and cause her to excel
above her expectations.

Help her to shine
in the darkest places
where it is impossible
to love.

Protect her at all times,
lift her up when she needs
You the most,

and

let her know when
she walks with You,

She will always
be safe.

Love you Girl!

I Love you too, grammy!

Please take a moment to read

2011-02-22T08:03:00.001-06:00

I found this blog, and it is great. Please take a moment and follow this LINK, read, and help out!!!

tear................

2011-02-17T10:40:00.002-06:00

I was just going through my computer routine. I'm sure many people do this. Check email, check facebook, check blogs, etc. I had company during my routine. Finley Faith cuddled up beside me with her binky and blankie and had her head on my shoulder quietly watching what I was doing. I got to my blog, scrolled down the page and came to the birthday post with the baby pictures of Livia. She perked up, pointed, and said baby..........HOLD! She loves babies! I then told her that they were pictures of Livia when she was a tiny new baby. Finley then said "aaaaawwwwww, Livi-Loo." I immediately started to tear up. I love it when Finley calls her sister Livi-Lou, or sissy. I couldn't help but get emotional about their situation as sisters. I pray so hard that Finley doesn't have to ever know the word terminal when it comes to her sister. I dread the day she starts asking questions or we have to tell her something scary about Livia. I don't dweal on these thoughts, but at moments like this it's hard not to think about it. I thrive on the love and support of my sister. She is one of the most important people in my life. I'm so blessed to have such a great relationship with her. I admire her, look up to her for her wisdom, kindness, and unique self. I can't imagine life without her. I was so excited when we found out we were having a second girl. I was excited for their relationship. I hope and pray that my wishes for them will come true. For now, I love the sisterly relationship they have today. I'm blessed to have both of my girls. Livia full of Grace is my tender hearted angel. Finley full of Faith is my miracle. I'm blessed to have both of their unique and special selves in my life. I love you, girls!!!!

will someone hold my heart?

2011-02-15T14:44:00.006-06:00

One of my most favorite musical artist is Sara Bareilles. My pandora radio station is usually always set to SB. Her music is beautiful and I find a lot of inspiration listening to her words. If you are reading my blog right now, chances are you are hearing one of her songs playing. "Hold my heart" is the latest song I've added to my play list. I wanted to add "The light" but it wasn't available to add. You can click on the song and it will take you to her latest album and you can listen to the entire album, or choose which song you'd like to hear. Anyway, the point of this post is to express some of the feelings I've been having lately. There have been a few small glimpse's of Sanfilippo showing it's ugly face in Livia's beautiful life. I received an email last week from one of her teachers expressing that they have seen an increase in Liv's aggression. This was a HUGE heartbreaker for me. While reading the words in this email, my heart fluttered and my heart was once again sitting in my throat. No one wants to hear this. I really didn't know how to address the situation because we are not seeing this behavior at home. I emailed the teacher back telling her that we will address the situation and want to resolve it in the best way we can. I contacted her genetic counselor to get some advice, which helped somewhat. I then talked with my angel of a friend Stefanie Boyce. She is one of the wisest people I know. She offered support and insight to what they have experienced with Jayden. I have a feeling that our lives will mirror theirs. Unfortunately, SS will show it's ugly face in their family first.............maybe. Anyway, after pondering over this situation I emailed the teacher back and expressed to her that I thought this was Livia's means of communication. She is not able to use her words like she wants, and so an uncomfortable situation or dislike or want that she is unable to get across is probably resulting in frustration. Being Livia's mom, I'm bias to her. Meaning, she is mine. I love her unconditionally and she is an angel in my eyes. Even through Sanfilippo, my heart will never waver when it comes to loving my child. I know, however and unfortunately, there is a stereotype associated with a difficult child. I mean, not only do they have to deal with these aggressive behaviors, but they are changing her diaper as well. I know, I know, it is their job, and they wouldn't be doing these things if they didn't choose to. I just don't want any animosity or ill feelings towards my child. I want people to see her for the person I know she is. The girl who loves to cuddle with her mommy and giggle. The next thing isn't big, but it's another "thing." Livia now has to wear a harness vest thing on the bus. She was being double buckled and we gave her her barbie to keep her hands occupied as to not unbuckle herself and get up. I've delt with this in the car, as well. Having a child get out of her car seat on I-90 in the middle of rush hour is NOT FUN! Liv's bus driver is so kind and soft spoken. She has been very honest and tried every option before going to the vest. It was time, though, for everyone's safety to change Livia's IEP and put her in the vest. Today was her first day in the harness. Next thing, Livia's diapers are getting to tight. She is in the last size that you can buy in the store. Luv's are about the only diaper that seems bigger than the rest that we can get away with putting her in. I'm not ready to go to the medical supply store to buy bigger diapers. It's something that I know I'm going to have to do soon. Her chewing has increased......A LOT! If you come to my house and pick up a Barbie, they are either missing both feet because I've amputated them due to Livia's chronic chewing. OR, they are about to be amputated. She is getting small pieces of plastic off of them. I know I shouldn't even let her have them to chew on, but it's her preference. If I try to put her favorite Barbie of the moment out of sight, she will cry for it. She asks for it and uses the word Barbie. I guess I kind of feel like I'm rewarding her for using her words. I've thought about looking into the "chew toys" that other families have used, but I am not ready to have those in my house. It's all denial on my behalf. Putting all of these issues off or aside is doing Livia no justice. It's putting my feelings in front of her needs, which I know better, but I'm just not ready............or will ever be ready to let Sanfilippo in. You see, this scary, uncertain, heartbreaking reality is my reality. It is something I live with and is in my world 24/7. Somedays I just want someone to hold my heart. I read scripture and my Faith carries me through each and every tough and not so tough moment of my life. But it is in the front of everything, everyday. It's not going to get any easier from here. So, how do I deal? I find the right time to go buy bigger diapers at the medical supply store. I figure the chewing thing out, when I feel it is time. We deal with the school issues in the most open and honest way possible. We NEVER want enemies. I have no desire or have no time to put effort into being the mean possessive I'm always right mom. We just deal. We make the adjustments and just enjoy today. I guess, in a way, I'm glad I get Livia the way she is. She is easy, loving, and her salvation is secure. This is something I reflect on so much. It's the reason why I'm choosing to put God first in my life because I know that if I continue down the path I've chosen, one day, Sanfilippo won't be in our eternal life and we will be together in divine happiness.

Before my eyes

2011-02-04T14:00:00.006-06:00

Livia Grace Hubert

Born 2/6/7

6 pounds 4 ounces
19 inches long
12:10 pm

Where has time gone? It was a short 4 years ago that this beautiful little girl entered our lives. I'll never forget the day Liv was born. Livia was delivered C-section due to a breach position. Everything was planned, which I really appreciated, because I'm a planner. At that time I was an OR employee, so I got to choose (mostly) my room staff. My friends and colleagues were there to share in this experience with Jake and I. It was a very blustery day. Blizzard like conditions. I loved it. It was a routine c-section. IV's, nausea, drapes, insturments clanking, familiar smells (to me), quick spinal, and things were rolling. It was calming to have my friends with me. Words of encouragement and what to expect next. My friend Greg was my CNA. He was wonderful. Once the surgery was underway, things happened so quickly. The nausea hit fast, but Greg was there with his alcohol wipe to help me "sniff" it away. Lot's of tugging and stinky bovie smoke, but after a few minutes, I heard her. It was like music to my ears. I heard Jake say "she's here." Everyone was cooing over her, of course. And then the drapes dropped. There she was. My beautiful girl. The first thing I noticed was her dark hair, and how much there was! Her hands were curled together under her chin. Her lips were so red and pursed as if she was ready to give me a kiss. Her legs were crossed, indian style. She was perfect and she was mine. That moment is burned in my brain. It was almost as if time were moving at such slow speed. Like you see in the movies. I know the moment only lasted a few seconds or maybe even a minute, but when I think about it, it's a daydream that lingers. I cling so tightly to this memory of the first time I saw her. Even thinking and writing about it now is making me cry. I held Livia for the first 18 months of her life. I was so protective of her. I didn't really want anyone else to hold her. I wonder if in my subconscious, I knew something was wrong? Being a mom a second time, and seeing other mom's and how they are with their babies, I really feel like that time with Livia was meant to be. Before I had Livia, and dreaming about what a mom would be like, I can remember thinking about having a 4 year old. For some reason, I thought this age would be one to look forward to. I thought, a 4 year old is transitioning out of the toddler stage, learning new words, and communicating in funny ways. Their imaginations would be filled, but they would still be little enough to really need their mommy and daddy. I have some of that with Liv, but having my 4 year old is not what I dreamed. Birthdays are biter sweet around here. I love having them, planning them, and celebrating them. Who doesn't like a good birthday party? With Livia's birthday's, I almost dread them. It's not that I don't want the celebration, because she IS worth celebrating, I just don't like the thought of one more year gone by. It's hard not to be emotional around a birthday when you have Sanfilippo in your life. With that said and out of the way, on Sunday, think of Livi Loo and wish her a Happy 4th Birthday! It's a day to celebrate this precious gift from God!
This picture to the left is from a small celebration we had last weekend. She loved her balloons!

A bundle of nerves

2011-01-31T21:52:00.003-06:00

I thought about having a glass of wine to help calm my nerves, but settled for a brownie instead. I'm thinking the wine would have been a better option. Voting for the Pepsi grant ends tonight at midnight. We have slipped from 1st, to 2nd, and even to 3rd place today. We are in first right now, but have to rally those votes and end strong. 2 hours and 4 minutes.............will we pull through? This money could mean a chance for Livia's life.

Please vote.

Please pray.

A labor of love

2011-01-30T20:40:00.005-06:00

Being at my grandma and papa's house is such a comfort to me. When I walked in the door today the familiar smell of their house and their welcoming voices and arms was just what I needed. To be in a place that feels so safe and rekindles memories of nothing but happiness is true bliss. Tomorrow is grammy's birthday, so we had a little celebration at lunch. With my belly full of home-cooked food and delicious cheesecake made by my beautiful sis, we visited and talked about the day grammy was born. Ommie, mygreat grandma, told us about that day. We then played a couple games of euchre. Which, by the way, Ommie and I beat Audra and Doug.........both games!!! Grandma then proceeded to show me her latest projects. Side note: my grandma is one of the most talented women I know. I come from a long line of creative women. Anyway, she has been creating Liv Life shirts for us to sell to help us with our medical bills or cost of Genestein. These are homemade, by grammy. Different than the shirts we have made for the foundation. People have been requesting these shirts left and right. Grammy has been buying shirts when she finds them on sale, tracing the iron-on's, cutting out the fabric, and embroidering the letters. She's created an assembly line to maximize her time, but she estimates one shirt takes about 5 hours, start to finish. When I saw all of this, I insisted we help with the process and even volunteered my mom to help out. I traced, mom cut out, and Grammy continued placing each and every letter on the shirt. No sewing was completed today. This is all a labor of love. Complete, self-less, beautiful, generous, labor of love. To commit this amount of time and her own money to do this for us, for Liv, is true love. I really can't put into words how much this has touched me. Thank you grammy for loving me and my family unconditionally. Thank you for creating such a warm place for me and the rest of OUR family to come. I hope you know how much you mean to me, and how much I LOVE YOU! You have filled my heart more than I can ever express.

Losing the weight of offense

2011-01-28T14:34:00.004-06:00

The latest series at church is called "Fit for life." Each week has had a clever title and has touched my heart tremendously. Each week has started off with the verse:

1 Timothy 4:8
Physical training is good, but training for godliness is much better, promising benefits in this life & in the life to come.

The weeks have been titled "Skinny Fat," "Losing the weight of guilt," and "Losing the wight of offense." I wanted to recap each week, and tell a little about what I learned from each message, but honestly thought I'd lose a lot of people's attention and thought I should just get to the point. If you'd really like to know what I've learned from one or all of the weeks, I'd be happy to share with you. Send me a message at kelfish121880@hotmail.com!

So, last Sunday...........Finley was having another fussy morning, and Jake and I were both convinced that she had another ear infection. He stepped up to the plate and volunteered to take her to convenient care to get her ears assessed. Livi and I decided we still wanted to go to church and just spend the day together. My plans were, church, lunch, and mall. A fun girly day! Sunday school for Livia is like going to a childcare drop in. The rooms are divided among ages, and her age group does get to go to chapel and worship. It's not just strictly playing. I sign Livia in, put a name tag on her, and walk her into the room. A new lady volunteer, that I'd never met, greeted us at the door. I started to hand her Liv's water and her diaper........like I've done every Sunday before this. The lady put her arms up, took a step back and said to me "Oh, they must be potty trained by the time they are in the 3's room." Of course my heart sunk, started beating rapidly out of my chest, and I could feel my face getting red with sweat beads. I then proceeded to tell her that Livia has a terminal disorder and will probably never be potty trained. She then proceeded to say "Well, we just don't change diapers in here." ARE YOU KIDDING ME? I just said the word terminal and child in the same sentence, can you just please take the diaper? (I didn't say this, but was thinking it.) I immediately was offended and hurt and could feel the anger rising in me. I started to get defensive and explain our situation like it was our first time there. In the mean time, a young lady volunteer who is probably a HS student, stepped in, raised her hand and said "If Livia needs her diaper changed, I'd be happy to do it." OK, problem solved, I'm going to church. Nope, the first women then says I'm getting the room supervisor. WHAT???? Am I at church or am I somewhere else? I'm so mad at this point, and I'm fighting back tears. He (the room supervisor) walks up to me and says "is there something I can help you with?" I then started all over again. "I'm Livia's mom, she has Sanfilippo Syndrome, etc. etc. etc. and this lady JUST WON'T TAKE HER DIAPER." He said. "Oh yes, we know Liv, she's wonderful. Betsy (who is my friend and head of the childrens ministries) told us about your situation and we will take her diaper. If it's ok, we'll just call your number if we need you." I'm off to church, by myself, crying........................

The message, the most perfect timing, the most perfect words and verses were placed on my heart. God was truly working that day. I feel like I've been offended a lot. Of maybe I get hurt to easily. I know I wear my heart on my sleeve, and that leaves a lot of vulnerabilities exposed. All my issues. However, when you have a special needs child, your guard (regarding them) is always up. I'm very protective with Liv. I don't like having to use the word terminal or explain what might happen to her. It is the hardest thing to have to do. However, I'm not going to let these defenses harden me as a person. I love people. I love interacting, learning about people, and most of all seeing the goodness and potential people have to offer. So when I get offended, it really cuts me to the core and I take it personally. How do we lose the weight of offense?

1. We must understand the source of the offense.
2. We must understand the impact of the offense.
3 When you hold on to a grudge or an offense, you cannot receive God's blessings long term.

Pastor Jeremy said "anyone who is a mature Christ follower and correctly understands the Word of God cannot stay offended. God cannot bless an offended person."

4. When you are offended, you will eventually stumble spiritually.

I was ready to stumble. I was ready to put my defenses up and tell this lady what I really thought and how I was feeling. But, I knew it wasn't the time or place. I needed to just walk away.

Psalm 119:165
Great peace have they which love thy law; and nothing shall offend them.

So how do you deal with offense?
APPROACH. Go to the person who offended you, if possible. This is a hard one for me. I HATE CONFLICT. I avoid it at all costs. I'd rather have my feeling hurt then hurt someone else's.

Matthew 18:15
If another believer sins against you, go privately and point our the offense.

FORGIVE. Easy enough!

"Unforgiveness is like drinking poision and then hoping it will kill your enemies." Nelson Mandela

UNTIE. The Aramaic word for "forgive" means literally to untie.
Forgiveness will set the prisoner free and bring about the realization that the prisoner was you. Pretty powerful if you really think about it!

BE QUIET. So, this post is really what I shouldn't do. I'm re-tying myself to the situation. Gossip, throwing someone under the bus, or blogging isn't being quiet. People's actions are an unenforceable offense. We have no power over other people's words or actions. It's our choice how we handle it. It's our choice to untie. We cannot change someone else's heart. Only God can. God is the defender of your pain.

THINK BIG. Decide to do the right thing. Realize that this offense is not the defining moment in your life. This is only a slice in your life. Decide that this is not who I am.

This is all so true, but it doesn't erase the moment, and it doesn't erase the pain. I know I will be offended in my life. Probably a lot. I am going to always remember this message and choose to do what is right. I'm so thankful for that day and everything that went on. It's ironic, but I really find purpose in my pain.

Worried in the ER

2011-01-27T10:55:00.002-06:00

Yesterday around lunch time I noticed that Livia had a bunch of little red dots over the bridge of her nose, under her eyes, around her temples, and across her forehead. I'd thought for about a week that she looked pale and tired. I called the doctors office right away but couldn't talk to a nurse right away. I called my aunt in Michigan who is a nurse and has an extensive pediatric background. I described Livia's face like someone had taken a straight pin and poked all over her face. Brenda thought it sounded like petechiae, and that it should be checked out. Apparently, people who have vomited a lot or have coughing spells that are choking can get petechiae. Livia has had none of that. It can also mean that she has low platelets. Her platelet count is usually on the low side, but something that needed to be checked. Our pediatrician recommended we go to the ER to get blood drawn and results right away. We made our way to the ER, which anyone who has experienced going to an ER knows how stressful it can be. Long waits, crowded waiting rooms, people wearing masks, drunks stumbling all over the place, and maybe even a women in labor. Not a fun place for a 4 year old to be. We really didn't have to wait long, which was a relief. Once we got checked in, it was a non-stop explanation of what Sanfilippo Syndrome is. Thankfully, I had some of the brochures that I made with me, so I handed them out and explained along with them. I got great response and warm regards from the brochures (which I wish I'd made a long time ago). But every single person we came into contact with had never heard of SS or the supplement she is on. So once again, the gritty and grim details were pouring out of my mouth. The staff was very kind to Liv and as accommodating as possible. Blood was drawn and a brief "once over" assessment was completed. She is so use to her blood being drawn that when they prepared for the blood draw she just stuck her little arm out like she knew what was coming. It brought a tear to my eye. At least she doesn't put up a fight or scream. She's one brave little lady. After being there for 4 1/2 hours we were free to go. Blood results showed her platelets are low, but not low enough to replace them. I left feeling like I didn't really get any answers. I left feeling like a number. Trying to speed our discharge up, I opened our room door and sat on the end of the bed. Our room was located in eye shot of where our Doc was sitting and dictating. I think he could feel me looking at him. I then heard him say "could someone please get G out of here." So, let me re-phrase. I didn't feel like a number, it was more like a letter. We were in room G. Our nurse practitioner called this morning to check on us and ask some questions. I expressed to her that I didn't feel as though I had any explanation as to "why" this was going on. She asked me if they did x,y, and z. I responded no, no, and no. She was concerned, and is getting all of her blood work and assessments to re-evaluate. So, we still don't really know whats going on with her. I kept her home from school today to rest and just keep an eye on her. She and Finley have really enjoyed playing at home today. I made them a tent to play in, been giving horsey back rides, played barbies, and tickled a little. They are having a popcorn snack, and since I've been typing it's all over the floor and couch. Time to get the Dyson out! Time to give my attention back to them! Thank you to everyone who emailed, facebooked, called to check in, or give their words of comfort and prayers. It means so much to know there are so many of you who are thinking of Liv and the rest of us and sending up a little prayer! We'll keep everyone posted!!!

An explanation

2011-01-26T13:36:00.003-06:00

A lot of people have been asking me what this Pepsi money means. What is a gene therapy and how is it applied. Through a friend of a friend, here is the explanation.

The basic principle of gene therapy is to introduce a corrected gene to the body so it is taken up & begins to work properly. In the case of Sanfilippo Syndrome the gene that is involved in specific enzyme production for each type (A, B, etc.) is damaged. The corrected gene is put into a “vector”, or harmless virus, which is introduced to the body. This allows the gene to get into the cells where it can begin to function & produce the missing or broken enzyme. Unlike ERT (enzyme replacement) & drug therapy which requires lifelong dosing, gene therapy is done once – if successful the body takes over & reproduces the corrected gene.

Dr. Fu tested her gene therapy on Sanfilippo Type B mice using a single IV injection. Her research is so significant because the AAV9 vector she used passes through the Blood Brain Barrier & the corrected gene is widely dispersed throughout the entire body. Dr. Fu was not only able to extend the lifespan of the Type B mouse colony, but more importantly showed clearance of the storage caused by Sanfilippo & improvement of cognitive & motor functions.

Based on her results the next step is human clinical trials. It will take $1,200,000 to do the necessary toxicology, trial design, vector production & FDA submission to get there. Ben’s Dream – the Sanfilippo Research Foundation - has already granted Dr. Fu $200.000 to start the process. If won, the Pepsi Refresh grant will provide another $250,000 toward that goal – focused on vector testing & production.

Dr. Fu believes that she can apply the same technique to Type A. A Life for Elisa – the Sanfilippo Children’s Research Foundation - has granted $160,000 to replicate her Type B results on Type A. This money is outside of the dollars needed to bring Dr. Fu's original research to human clinical trial.

Even with the Pepsi Refresh grant we still need $750,000 to get Type B to clinical trial. If we are unsuccessful, it will not be possible to advance A or any other type beyond mouse research. We need to work together to bring Dr. Fu's original research to human clinical trial as soon as possible.

This, to me, sounds like a lot of money and almost unreachable. But is it???? We have so many people that are on our side to fight this fight with us. I would think that if we all rallied together, raising this money would be simple. Hell, if everyone in the state of Illinois donated only $1, that would be $12 million dollars to save a lot of childrens lives. (excuse my french!!!) Time IS NOT on our side. Everyday means a little more build up (GAGs) which means, well, I don't want to think about what that means. Let's put our heads together and let's raise this money. Come on Illinois, make a difference!!!!

Intentional

2011-01-24T12:18:00.005-06:00

My friend, Lis, placed this word on my heart. It really is a great word that I intend to adopt with everything I put my heart into. I really want to make a difference. I desperately want to help others, and help my family. I want to be so intentional at LIVing my life. I want to be the most intentional mother in the world!!!!! I want to give both of my girls every opportunity that I can. I want them to know how special and loved they really are. I want to be intentional in my Faith. I want to be "salt and light." I want to resonate, with my actions, what is in my heart. Meaning, my love for our Lord and his Law is how I want to LIV my life.

So, with the word intentional, I entered a contest. It may be bold what I requested, but I had to try. If nothing comes about with the contest, at least I've educated one or two more people about Sanfilippo Syndrome, and my beautiful family. Here is what I entered.

In 2011, I resolve to be intentional. Especially in my childrens lives. Livia, 4, has a terminal illness called Sanfilippo Syndrome. Finley, 2, is her sister. Since her diagnosis, we know how important it is to make everything matter, to be intentional in everything we do. Since her disorder is so rare, our foundation focus is to spread awareness and funds for research. I want to be intentional in their lives by providing every opportunity for them to the best of our abilities. I want to keep them safe. We are blessed with the home that we live in, but it is not handicap friendly. Livia's future includes, but is not limited to: multiple surgeries, loss of communication, loss of ability to eat and walk, loss of her life. I want her life to be purposeful and fun. If we had our mortgage paid off we would be able to ease the worry of paying for all of her medical bills, save for a safe and handicap friendly home, and most of all be intentional with our money to help others and provide opportunities for our kids!

We'll see if anything comes about with this. In the meantime, keep voting! Only 8 days left until the Pepsi Refresh is over. We've held 1st place for a long time. We'll see if it pays off on Feb. 2nd when they announce the winner. GO TEAM SANFILIPPO!

Whispers

2011-01-19T13:13:00.004-06:00

For the past few months I've started whispering in Livia's ear. I say the same things over and over again. I do this several times throughout the day. My hope for this is if one day she isn't communicating, or life is very scary, I can whisper these familiar sayings to her and it will bring her comfort. I want her to always feel safe and secure with me. I want to be her comfort. She is so precious and easy going. I hate that her life isn't going to be easy. I'm not saying life is easy, but unfortunately, even if a cure or treatment does come about for her, this is going to mean routine doctor visits, infusions, etc. Believe me, I want this over the alternative. But I'm realizing that this isn't all just going to go away. This realization has made me want to work even harder. To fight for our children's lives and to tell her story. I'm proud that Livia's face is all over facebook and that she and her MPS friends are touching other people's lives. I wish it was for another reason, but it's not. This is our life and we are going to make the most of it. I wish I had all the resources and knowledge to do everything that I have brainstorming. I've been working on one of my resolutions, the not being afraid to ask for help resolution. I've had talented people offer their help and time. It's awesome. It humbles me to know that there are people who really do want to do something to help us out. If only we all couldn't just "pool" our talents, knowledge, and strength's to help one another out, don't you think this world would be a better place to be in? Anyway, I kinda got off on a soap box rant. I just want to thank all our friends and family out there who are voting everyday for the Pepsi grant. It is HUGE that we are in first place. Just a month ago the average person had never heard of Sanfilippo Syndrome, now we are ranked 1st. I think there are over 100,000 teams, people, foundations out there going for the 250K grant. It's great that we are making such a big impact. Keep it up until Jan. 31st at midnight.
As you tuck your kids into bed tonight whisper something in their ear that will bring them comfort. Even if its been a day of frustration, trouble, or sadness. You are your biggest comfort to your child. Let them know. Let them know that they are your heart. That you love them more than life!!!!

I'm proud to be Livia and Finley's mommy! I'm proud to be fighting and making a difference! Please feel free to share this picture. Make it your profile pic or just email it to your inbox. Help keep this going strong!

Pugil Stick Champion

2011-01-13T06:24:00.003-06:00

Jake has a really good way of describing a situation or explaining his emotions by relating them to another. Yesterday was a hard day. Emotionally for me. It's unusual for Jake and I to both have a hard day on the same day, but when he walked in the door last night with red eyes swollen from crying, I knew he was having an emotional day as well. He's been having a really difficult time at school. No offense to any high schooler's reading this, but MAN.............some of you are hard to handle! He's in charge of the discipline at the HS. For those of you who know Jake, this job is hard for him since he is such a social person. Jake is such a realist and thrives on logic. (I've come to really NOT like the word LOGIC!) Anyway, the issues of school, having late nights, Livia, meetings, meeting deadlines, and worrying about an emotional wife brought Jake back to his Pugil stick Championship in the military. He compared this victory to how he felt life was coming at him. It was he and another guy in the final round of this game. He told himself that if he just kept swinging, eventually the other guy would have to stop. When Jake puts his mind to something, he will accomplish it. He won. He swung and swung and swung and eventually the other guy quit. He said that he feels like he keeps swinging at life, but life isn't giving up. Like we are taking one step forward just to take 10 steps back. I get so strong and get so focused to move forward. I'll open an email or see a photo on facebook just to get pushed down. I sooooo badly don't want our vulnerabilities exposed, however, I'm not going to be fake or pretend like everything is hunky dory. Facing the truth that our daughter has a terminal- whatever you want to call it- is hard. Knowing that we are going to fight with every last breath of our being, is exhausting, but we are all Livia has. We are not going to put our Pugil stick's down until we win. Keeping our faith and trust in God and knowing that His Will will be done can easily be pushed to the side when you have 2 young children that require all your attention. God is suppose to be placed #1 in our lives. Above everything. I hunger for His word, it really does bring me comfort and peace. I have amazing people in my life who share scripture with me and I can't tell you how much it helps me, and grounds me. It's hard, though, to make that time (for Him) during my day to bring me peace. On the hardest day's, even though I know better, I want to hide from it all.

Matthew 5:14 "Here's another way to put it: You're here to be light, bringing out the God-colors in the world. God is not a secret to be kept. We're going public with this, as public as a city on a hill. If I make you light-bearers, you don't think I'm going to hide you under a bucket, do you? I'm putting you on a light stand. Now that I've put you there on a hilltop, on a light stand—shine! Keep open house; be generous with your lives. By opening up to others, you'll prompt people to open up with God, this generous Father in heaven."

Thank you, Stefanie, for sharing this with me. I do want to shine. I don't want to be remembered as the mom who was always sad, never fun to be around. I want to walk through life with my head held high and proud of what we are doing. I want to be an example, a positive and OPTIMISTIC example. More than anything I want: Matthew 25:23 "His master replied, ‘Well done, good and faithful servant! You have been faithful with a few things; I will put you in charge of many things. Come and share your master’s happiness!’

For today, I will be happy. I will shine in my children's life. I will be a positive example for them and teach them about our Savior. I will do what I can. I will not stress about what I can't accomplish. I will swing my pugil stick because I am determined NOT to give up! AMEN!

An easy way to help

2011-01-04T21:13:00.003-06:00

Friends and Family...........Pepsi is giving out a $250,000 grant and all you have to do is vote everyday for the rest of the month. The group that has the most votes wins. This grant would mean money for research to help find a cure to save our children's lives. This is free and easy. You can vote multiple times a day, and even text a vote in. We are currently in 11th place. That is really promising seeing how many groups are in it to win. Right now a Monkey refuge, Mark Twain's historical home re-vamp, and a girl's summit are ahead of us. I also just read that a man is staying on top of a lion's cage at some safe haven in order to raise money for their cause. I think it's great that people work so hard for the good in this world. But honestly, we are talking about saving CHILDREN's lives. Seriously, I can't think of anything more important than human life. I really do care about other causes, but I can't sway with this one. My heart is in this world for good, all good. But let's fight the good fight for our kids. Please help and please help pass the word.

http://www.refresheverything.com/curesanfilippo

My heart

2011-01-01T14:16:00.002-06:00

Livia communicates really well with me. She is able to tell me when something hurts or when she wants something that is out of reach. She tells me what she wants to eat, or doesn't want to eat. Her drinks of preference are milk, water and tea. I love the simple requests that she makes. Her voice is like music to my ears. The reason for this post is to put something out there that may someday have meaning. It's not everyday, or even once a week. It's very random but it's something Livia try's to tell me and it's the same every time she does this. She will get my attention, look me in the eyes (which is rare) pat her chest over her heart and tell me "Mama, my heart." Sometimes she will precede the mama, my heart with "the doctor." Sometimes I think she is telling me that the doctor listens to her heart, but my gut tells me that's not it. I feel like she is telling me there is something wrong. Maybe it's nothing, maybe it's something.

Neglect

2010-12-21T07:31:00.002-06:00

TRUTH: I've been avoiding my blog like the plague. Lately, I've been in total denial of Sanfilippo. Livia is doing really well and so I've put everything on the back burner. Liv Life foundation included, but I will get to that a little later. I've gotten the privilege of helping in Liv's classroom a couple times these past months. In the beginning of school when I would go for a visit, she would see me and then cry and cry. Now, she wants to show everything off. She's so proud of her room and teachers. I really love going and helping out. I love to see and hear about her progress. When I hear she is doing something new, I know she isn't regressing at all. I'm scared for the day (if that day ever comes) that I won't hear her precious voice. I love hearing her call for me, sing ABC's or Happy Birthday, call for Finley which comes out Ninny or Sis, ask for the Wiggles, read her favorite books, or just hear her say love you, momma. So, point being; my blog, the foundation, and the paperwork that goes along with ALL of it reminds me of the sad truth of Sanfilippo and that MY daughter has it. I pray about this all the time. I pray for God to show me guidance and to hear his voice as to what direction I need to go with the foundation. I feel so overwhelmed with the foundation. Honestly, I just don't know how to be a mom, a wife, and be an advocate for Liv life. The foundation takes a lot of work. The website alone gives me a stomach ache just thinking about it. I've tried and tried to teach myself how to be a web designer, graphic artiest, etc. etc. It takes HOURS on the computer, just me, trying to figure things out. OK, deep breath. As I type this, read it, re read it, I think to myself.......Kelly, it's better to do something than nothing. Stop complaining. So, here is my idea. If you've read my previous blog posts you know that something I struggle with is asking for help. I came up with this idea on one of my runs (when I come up with my BEST ideas). Form a Liv life council or some sort of board. Put it out there as a volunteer basis. Have meetings once a month or as needed. Tell people you will feed them to get them to your house. This I know I can do! People want to help, right? But what if I get no response, then what? Pray about it. I know that whatever will be will be. If God intends for me and Jake to be the soul runners of Liv life, then we will make it work. If he intends for this to grow like I envision it then it will. I feel like we (our family) is on our way to where we need to be in life. He is showing us people and places that I feel like will open many doors in our future. It is a positive and exciting place to be. More on this subject to come!

So, another reason I fell so moved to dive back into the world of Sanfilippo is because of my beautiful, intelligent, motivated best friend Stefanie Boyce. Every time I see her or talk to her I gain strength and knowledge. She is really an amazing person. She's introduced me to some other beautiful and intelligent woman that make me feel so loved and welcome. I really feel like I'm a part of something so deeply and wonderfully real. Anyway, Stef is working on her own ideas for the world of Sanfilippo. She is so inspiring and motivates me to just do it. Stef also comes to my rescue in my darkest times. She is the friend who calls and will pray with me over the phone. She, because of our situation, just gets it and understands everything I'm feeling when all I can do is cry. She and her family is such a blessing to our family. I thank God everyday for crossing our paths.

Stefanie was at my surprise 30th birthday party. Side note, my hubby is wonderful. He totally surprised me and spoiled me all day. I love you Jakey! So, another way I've been pushing Sanfilippo aside is by not renewing our MPS society membership. We've not been receiving the Courage publication, which I really do miss. By not getting this we've missed the last publication which not only donned the most beautiful Sanfillipo baby, Brooklyn Boyce, but also gave some really promising and exciting news for MPS IIIA. This hope that we hold for our children's future is what gets us through everyday. Whether you have a healthy child or a child with a special need, your desire for them is the same. You want the best for them no matter how many days they have on this earth. I strive for my children to be good, respectful and most of all happy. I want them to learn about our Savior and that our life here on earth is only the beginning. This is what I hold onto and because of that I can LIV each day to the fullest.

All of this said, like everyone I've started thinking about my New Year's resolutions. Here are a few that I've come up with so far.
1. Find the strength to continue with Liv Life and not give up.
2. Not be scared to ask for help when I really need it.
3. Renew MPS society dues.
4. Finish the things I've started (kinda goes with #1, but applies to other things.)

I have more, but I think the list could get crazy. Merry Christmas, Happy New Year to all of you. Remember the TRUE reason for the season and tell your children about it. They will thank you in the future!

God Bless

An idea

2010-12-01T06:52:00.003-06:00

I was approached yesterday before pilates class by a friend, Ed. He is someone I've come to know through the Y and through running. He is a marathoner and someone I look up to. He came to me with a fund raiser idea for MPS. I instantly started crying and really couldn't express my feelings or words. I feel bad that I started crying like that. I'm not sure how he felt around a bumbling mess like that! I know my feelings came from loneliness, gratitude and excitement. What a mix! There are times when I feel so alone in this journey. Not only being away from family, but when it comes to the website and fund raising it can be very overwhelming. Gratitude because I was so thankful that he was thinking about Livia and MPS. Knowing that someone's wheels were turning about my child during their time was very touching. Excitement because his idea is fun and easy. All in all, it was nice of him to come to me about this. I hope my crying didn't scare him away and I hope the idea works!!! Thanks, Ed for being there and for keeping those wheel's turning!!!

Grandma Fish

2010-11-11T06:37:00.002-06:00

My Grandma Fish passed away Sunday, November 7th 2010. She entered into His loving arms being reunited with Grandpa Fish and her beloved Fe-Fe. She will be missed by so many people. My dad asked my sister and I to write our most fond memories of gma. Audra and I both read what we wrote. Here is what I had to say.............

My Grandma Fish, was a lady of elegance, generosity, kindness and love. She was always so happy and upbeat. The word “NO” was not in her vocabulary. I have so many fond memories of her.
The one that tops my list is an example of her generosity. She never wanted anyone to feel left out, especially her grandchildren. Whenever there was a birthday party or any type of event that involved gift giving for a sibling, she would always bring a little something for the other grandchild. No one was ever forgotten.
Going to Grandma and Grandpa Fish’s house was always a treat. Literally, a treat! The candy drawer in her beautiful china hutch was always stocked and ready for the taking.
Playing at grandma and grandpa’s house was an adventure. I can remember playing in her closet, trying on her clothes, admiring her beautiful jewelry and even wearing her shoes. Grandma always dressed beautifully and even in her nursing home days, donned her beautiful jewelry, even if made from plastic beads. She made anything look good!
Another fond memory was of her CB radio in her car. She let me talk on it and even come up with my own “trucker” name. I named myself “curly sue.”
On a Girl Scout get away that couldn’t have lasted more than a long weekend, I received a care package in the mail. Not just a letter, but a box of “stuff!” It was from grandma and grandpa Fish. At the time, it was the “stuff” in the box that was so cool. I can remember showing all my friends the treats inside. Now I look back on this memory and realize that it wasn’t the “stuff” in the box that was so cool, it was the people that took the time to send it just because they loved me so much and wanted me to feel special.
The legacy that my grandma has left in this world has taught me so much. Her kindness and generosity touched so many people. I’m so fortunate to have been a part of her life and am proud to be her grand daughter. I will miss her so much, but know we will meet again.

All my love, gma!
Kelly Fish Hubert

Family

2010-11-08T06:41:00.004-06:00

Jake, the girls and I are so blessed to be parts of such amazing families. Being so far away from everyone is really hard. It's not easy going through the everyday things without some sort of support. (We do have great friends that are here, but it's just different with family.) Having the support from our families is really a wonderful and comforting thing. My mom's side of the family had a family reunion on Sunday. This was a yearly Thanksgiving dinner that we really don't miss. This year we were offered to put up a donation bucket, sell our t-shirts and coffee. This was a great offer and I felt very lucky to be able to do this. On our way to the reunion, I got extremely anxious and nervous. My heart felt like it was going to jump out of my chest. I knew I was going to have to talk about Livia and her condition. Sometimes I find myself hiding from MPS and ignoring it's even in our lives. Sometimes it's easier to do this. But, I was about to face it and face telling people...........family..........about this devastating issue that is going on in our life. I really think my nervousness stems from my uncertainty on how we will be received. Not if we will be able to sell anything or get any donations, but if people will embrace Livia and talk to us about her situation. All the monitary, foundation work, fund raising aside, the most important thing to me is to tell Livia's story and for her to be loved and have the opportunities that anyone else has. Of course I get nervous about saying the word "terminal." No one wants to hear that or have to live with that. However, she is here and we get to experience her today. That is a HUGE blessing. So, back to the reunion. I spoke right before we ate. I stood, holding Livia, giving as little detail but giving as much as I could to get the point across. This was a pretty big crowd that I spoke in front of. It's not the first time, but it was a lot of people standing, looking at us BUT, getting to meet Livia and learning about her. I could hear the shakiness in my voice, but I held my tears back. Which was a success. After I spoke, we ate. Then people started talking to me. Even in the food line, getting the girls food I was asked questions. All my nerves were for a purpose. I got to spread her story and she was embraced by so many people. I LOVE how social she is, and other children (who have no clue she is different), played and played. It was a blessing. The foundation raised money, and we even made some money to help us pay for Livia's Genestein. Our family's generosity, love and kind words meant so much, that I can't find the words to fit how grateful we are. This reunion, as nervous as I was to go, has fueled my desire to do work for our Foundation. To feel the out reach of support makes me want to do more for research and to spread Livia's story. So, for now, I want to say THANK YOU to everyone for loving Livia. For supporting our family in this journey. It would be an impossible one without all the help.

Enjoy today and Liv Life!!!!

"Therefore, as we have opportunity, let us do good to all people,
especially to those who belong to the family of believers."
Galatians 6:10 (NIV)

Energy

2010-10-06T15:36:00.006-05:00

I'm a frequent Facebooker and find myself having a love/hate relationship with it. I love it so much because I have a "relationship" or friendship with people or family members that I may not otherwise talk to (often). I love how easy it is to catch up with people and how easy it is to let people know what's going on. I love the network of MPS people. It's nice to have the resource at my fingertips to get advice or ask questions to other MPS families. It's also a great way to spread awareness of what's going on in the life of MPS. On the other hand, I hate it because the personal or real-life feeling is missing. I get virtual hugs often and lots of words of encouragement, but it's not the same as feeling a hug or hearing the words straight from a friends mouth. It's hard to see/read about what other MPS children are going through. Not that I don't care or want to hear, it's just a little scary and it put's the reality of MPS back into my life. I'm not going to lie, sometimes it's easier to just put MPS aside and just enjoy Livia the way she is now. I don't want to think she may not communicate with me or walk to me one day. I can't imagine having to discuss a feeding tube or seizure medications. There has been a lot on FB lately regarding MPS. I'm so proud of all the parents that have this amazing energy to do whatever it takes to do SOMETHING to try to save their children's lives. Foundations are being started left and right. Fundraisers are being planned. Interviews and News appearance's are happening all in the name of our children. I feel like I'm not doing enough on my end. I wish I had all the time, money and energy to do something amazing. Liv Life is a good start and everything has to start somewhere. I guess I'm just feeling a disconnect from the human aspect of things. If that makes any sense at all. Maybe I'm just feeling sorry for myself and just need to get out of this funk and find some energy to do something.

I think another reason I've been a bit down lately is because of how real MPS is feeling now a days. Livia's chewing has progressed from Barbi's feet and hands to her own fingers. She still prefers Barbi, but when that isn't available, it's her own fingers. I've been playing angel/devil with this next one because I don't want Finley to always be in the world of MPS. What I mean is, Finley is a tremendous blessing and I recognize that every single day. I look at her in a way that I don't think every parent gets to experience. She is making such great gains and growing so well. She is communicating so well and has even started putting two words together. She's starting to show interest in potty training which is a big one in my book. This is the start of Finley passing her sister up. This is really hard for me. This is where the angel/devil on the shoulders come into play. I'm so happy and thankful on one side and on the other I'm seeing a sadness in the situation. I have to dig deep today to find my energy and will to do something. I feel like I'm on a teeter-totter all by myself. How do I find a balance. Maybe Liv and Finley together are my balance. I do know one thing for sure..........I'm lucky to have my life, my children and a husband who loves me unconditionally.

Bittersweet

2010-09-21T12:55:00.009-05:00

This past weekend was an MPS family gathering at the Miller park zoo in Bloomington. It was a chance for Illinois families to gather, eat, enjoy the zoo and lend support to one another. We haven't gone to a lot of gatherings, but when one is coming up I always get very nervous and anxious. It stirs up a lot of emotions and just being around farther advanced children is sad. (I mean that with all the love in my heart!) Something happens when we gather with other families. It's almost like a peace comes over me and I'm not scared or nervous anymore. I find comfort in talking with other families who are affected. It's almost like we've been friends forever. Being with other people who completely "get it" is something that fills a void like no other. Then there are the families who have older children that I just want to say thank-you to for loving their children so unconditionally. These families have a strength like you can't believe. I admire you and you all have such a special place in my heart. I also feel like we are very fortunate to have gotten Livia's diagnosis so early. There are some families that don't get their child's diagnosis until they are much older and much more advanced in the disease. Keeping Livia stable and on Genestein is going to give her a much better chance for some sort of treatment. We are so hopeful and optimistic that something is going to come out soon. I really feel that is another reason why I am so at peace with this. I've learned that my gut instinct is usually 90% right. My intuitions about a lot of things throughout my life have usually been right. My entire life I always felt like something bad was going to happen in my life. Not necessarily to me, but something bad. Well, that has presented itself. So, my gut tells me that Livia is going to be spared in some way. I don't quite know what that is going to look like, but I really feel like something good is going to happen in her life. I think I'll hold on to that "peace" and if I'm wrong, it's provided a strength for me to get through each day.

Thank you Val and Steve for such a nice event. Your family is beautiful and all the work you and your family did for all of us was so thoughtful!

To all the families we got to meet, thank you for taking the time to know us and lend support.

The Elston family, all of your children are so beautiful and fun! We will be life long friends!

Stef and Beeba (Jut and Jayden, too) Without you in our life, things would be much darker. You bring so much light and love into our lives. We love you unconditionally and cherish your friendship.

When will our miracle come?

2010-09-17T06:10:00.003-05:00

I look at my life and the productivity that I'm able to accomplish in a day. I have a great routine with the kids, and I thrive on that. There are some days when I am so ready to face anything. I can feel a strength from within that is so fierce. I'm ready to fill out forms, make phone calls, work on the Foundation, learn about managing the website, plan fundraisers, play with the kids, exercise and cook! This is the short version of "to-do's." Then there are other days, which I feel, are out-numbering the latter. These are the days when I stare at my "to-do's" and I run from them. I feel so overwhelmed with LIFE that I just turn the other way. I think I can justify this because it's denial. When I have the forms, the website, the emails, the fundraisers so on and so forth, it's all in my face. It stirs up MPS when all I want to do is hide from it. I often wonder if it would be better not knowing. Not having to look at my precious child that I hold so close to my heart and know that she is dying. We started the foundation in hopes of raising awareness, raising money for research, and to just have something to work towards. I felt like having this and trying to make a difference would be better than just sitting back and having nothing. I wonder. I honestly just feel overwhelmed with everything. I don't know how to do it all and do it gracefully. Where do I get the strength to face everyday? I need a balance and I think I really need help. As you've read in previous posts, I struggle with asking for help. For one, I don't want to bring people down. Another, I don't want to interrupt other people's lives. And all of a sudden, the strength comes. It comes because I know in order for anything to be successful, you must find the motivation and the strength in your own heart to just get it done. I find the strength because I'm Livia's voice. I'm her only advocate (Jake, too!) and this is all for her and the other children fighting for their lives.

OK, I kinda got off track of what I really wanted to say. I try to title the blogs with what my message is about. So far, it's not about a miracle. :) Jake often talks to me about when our miracle is going to come. He and I both feel like a miracle will come in Livia's life. Will it be in time to save her? I'm not sure. I honestly feel like she and others around her age will be the first one's, or just miss it. What I mean by this is some sort of treatment, most likely ERT (enzyme replacement therapy). We learned in the middle of the summer that they are starting an ERT for children with MPS IIIA in the UK and the Netherlands. We were on board and researching what it would take to migrate to Manchester, England. Our genetic counselor guided me with the phone calls, names of Dr.'s and hospitals, etc. We knew one way or another we would be going to the UK. A glimmer of hope only to be let down. After lot's of research and phone calls, we were told that they were only taking 15 children for the trial and only children in the UK. What about us? They felt like they could get that many children, no problem. I was advised by Livia's genetic counselor not to give up. Keep calling, keep trying. This is very hopeful news for the lives of children with MPS. If it is successful in the UK, it will come to the US. However, that means FDA approval and who knows what else to make it all ok here. I was told that they are hopeful for US trials as early as 2012. Let's keep our finger's crossed and prayers going!

As I think about it, these two topics really can be tied together. This hopeful news of a "miracle" really should be what fuels my strength. Why wouldn't I come out from hiding to try to make a difference in this process. Not to mention, to make a difference for my daughter in general.

Proverbs 3:5-6
Trust in the LORD with all your heart, and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.

This made me smile today............

2010-09-13T06:29:00.001-05:00

This is still on my page. Scroll down, it's under the last picture of Liv and Jayden. Please keep reading! All our love, The Hubert's~

A Hunger...............

2010-09-08T15:00:00.002-05:00

Livia has started preschool, and I couldn't be happier with the situation. I can already see a change in her speech and just her overall happiness and willingness to go to school. I'm getting daily email updates from the teacher and have even gotten some individual updates on how Livia is doing. Yesterday's email was that they are working on: on and off, up and down. This morning when I got Livia out of bed she pointed to her ceiling light and said "turn on, mama." She's been messing with all the light switches she can reach and saying, "on, off." She's never done this before and it's really an amazing accomplishment for her. She's been saying a lot lately, and these little things that I would have taken for granted are so heart warming to me. I still hunger for that "normalcy" that comes with a 3 1/2 year old. I hunger so badly just to have a conversation with her. I hunger to hear what she is thinking and to hear her tell me what she's done at school that day. I hunger for panties............of all things. She's showing every interest in the potty and will tell me "mama, poo-poo on potty." I'll take her to the potty, sit her there and nothing. She'll grab for the paper, wipe and flush. Ask to wash her hands and then poop in her diaper 5 minutes later. I have to learn to put my hunger aside. The reality is, this is probably the best time in her life and I must embrace that. As I wipe my tears away, mend my broken heart and swallow that lump in my throat I fill my hunger with her abundant smiles, hugs, kisses, and goofy laughs that go on all day. I'm filled to the brim with love and the knowledge that I get to be her mom. Ultimately, all I crave is that. Her happy big brown eyes tell me all I need to know. I'm satisfied with that and I'm satisfied knowing that His love endures all. My Faith and His love is a hunger that Livia has helped me find.

(2 Corinthians 1:2-5 NIV) Grace and peace to you from God our Father and the Lord Jesus Christ. Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows.

With this, I am satisfied.

Is this just a season?

2010-08-29T13:30:00.005-05:00

"Kelly, this is just a season in your life." I seem to be telling myself this a lot lately. The stress of having a 3 1/2 year old and a 15 month old is hard enough. Molars are coming in, Livia is getting taller or maybe the counters are getting shorter, the terrible 2's are already starting, bills are piling up, cars need fixed, the dryer broke yesterday, dr's appointments are more frequent, and temper tantrums are happening everywhere I go. Add to that the underlying worry of Livia's situation. I can't just make it go away. I worry about Jake and his job. He has so much stress during the year. I hate to hear him cry and hear how sad he is about Livia. It breaks my heart. Times like this I crave my family. This is so hard to go through being so far away. Everyone has stress and I feel guilty even writing about this. At times, it feels impossible. How do people survive these times? I pray about it and I do keep my faith. However, worldly factors sometimes get in the way. I wouldn't trade my life for anything. All of this "stuff" aside. I get to love and experience my kids. Being a mom and dad is so hard, but it's a blessing. "It's better to have loved............." I repeat this to myself almost daily, but I don't say the entire quote. I tell myself this because in the end I want to know that all my effort was put into loving my girls. Ultimately, nothing else matters. Yes, we have to take care of our responsibilities and do what is right. But in the end I want to look back and be happy; not mad, stressed, full of what-if's. This season in my life is a hard one. I have to just recognize that and try to make the best of it. Tomorrow is a new day, however, today is not over and there are still lots of minutes left to make it a good one.

Back to school shopping

2010-08-11T11:37:00.003-05:00

When we got Liv's diagnosis a year ago in July, that month was spent crying, celebrating the new baby, and learning everything possible about Sanfilippo. I spent most of the month in the house, wanting to hide. We were home to Central Il the beginning of the month, but the majority of the time was spent in devastation. I can remember one of the first ventures out of the house. It was a trip to Target with just Livia and myself. It was in the beginning to middle part of August when all of the back to school "stuff" was out. I remember watching all of the parents with their children shopping for all of their new school supplies with lists in hand. A particular mother and daughter caught my eye. The little girl was so excited looking at all the backpacks. I can remember watching her with tears in my eyes thinking I'm never going to experience this with Livia, and maybe not Finley. (At that time we didn't know the results of Finley's test). I wanted so badly to have this experience with Livia. I wanted to hear her excitement, hear her voice. I wanted her to tell me her excitement about school. At that time I thought life as I knew it was over. I was so heartbroken over a simple situation such as back to school shopping. Well, this weekend I'm going to get to enjoy something I never thought I'd get to experience with Liv. We are going back to school shopping. We are so blessed to live in a great school district. Livia is going to receive speech therapy, OT and PT right at the school. This is HUGE for her. For a school to house all of these therapies and therapist is such a blessing. I really feel God directed us here for a reason. When we talk to Livia about school she gets so excited. She starts talking (in Livi's talk) about teacher's, the bus, friends, and a BACKPACK! I'm so excited, and nervous, for her. This is going to be a big adjustment for all of us, but a good one. I'll post first day of school pics when that day arrives.

uN-cOmFoRt ZoNe

2010-07-21T08:45:00.011-05:00

Being "in the zone" is a place I've really come to appreciate. All my fellow runners will appreciate what I'm saying. Come to think of it, I think a lot of people are "in the zone" right now. Before 7/8/09, I was living in my comfort zone. Life was comfortable. I really didn't have many worries. I should say, my worries weren't in my face like now. I'd say I'm in the uN-cOmFoRt ZoNe now. Thinking about this theory isn't all a bad thing. In a runners world being in the comfort zone takes some stepping out of being comfortable and becoming uncomfortable to reach a level of achievement. Putting my body through strenuous routines isn't always the most fun thing to do, but the end results and the sense of accomplishment is such a good feeling. Being comfortable is easy. I never use to like stepping outside my zone. In a way, I really didn't need too. I feel like being in the uN-cOmFoRt ZoNe has forced me to grow up and become a person I never thought I'd be. I've learned more about myself in this past year that I'd ever give myself credit for. Being a bit uncomfortable at times has created a strength and focus that I've come to really desire. From here on out there will be situations in my life that will be unbearably uncomfortable. The ways in which I choose to handle these situations will create an end result that I can be happy with. My advice to you whom are struggling in some way; look at your life and see if the reason you are unhappy could be due to being comfortable. Are you stuck in a rut with your weight? Are you unhappy with your marriage. Are you struggling with accepting a situation that is scary? Do you have financial worries? Could any of these situations be due to not wanting to step out of your comfort zone to make a change? If you are willing to be in the uN-cOmFoRt ZoNe to make a change then things could get better. Only you can create your happiness...............or unhappiness. If you depend on anyone else, but yourself, to design the worth or comfort in your life then you are destined for disappointment. I can't tell you how many times I've written this and erased it. I felt like what I was trying to say was coming across in the wrong way.

Summer in the Hubert household has pretty much come to an end. Livia had surgery 3 weeks ago and Jake had surgery 2 weeks ago. Recovery is getting much better for everyone, but getting out and enjoying the fun things summer has to offer is just not happening. Finley just came home this past weekend. Between my mom, grandma, sister,dad, and Jake's mom and dad, Finley was in central Il for a week. AN ENTIRE WEEK. She did great and loved all the undivided attention. Not to mention it really helped me while I was taking care of Livia and Jake. Thank you to all of you who were able to help. I don't know what I'd do without all your support.

To be........

2010-07-07T10:35:00.004-05:00

{it is best to be}
"It is best to be honest and truthful, to make the most of what we have, to be happy with simple pleasures, and to be cheerful and have courage when things go wrong."

-Laura Ingalls Wilder

I have this lovely quote hanging in my house. I walk by it everyday and I always glance at it and say it to myself. I had this quote hanging up before we got Livia's diagnosis and it's something that I appreciated but didn't really whole heatedly live by..............until now. Honesty is something that will get all of us farther in life. Whether it's just simply telling the truth, being honest with ourselves about our own happiness, admitting what's on our minds, asking for help, etc. etc. saying it out loud is the hard part. In my experience, when I get something off my chest that's been bothering me, I feel better when I just say it. This past year I've been struggling with being honest about my feelings. It's hard to express and be honest about my thoughts. I don't want to burden anyone or bring anyone down. I think that's one reason this blog has been such a blessing for me. I feel like I can be completely honest here and just say what I need to say. So, here goes with being completely honest and admitting something that is hard to say out loud. I'm starting to recognize that my world is divided and probably will be divided for quite some time. I have one foot in a "special needs" world, and one foot in a "normal" world. I'm becoming more aware of this because Finley is changing so much and communicating so well. Livia is doing really well and using more words all the time, but it's different. I struggle so much with wanting so bad to have a conversation with Livia. I want to hear what she's thinking. Finley is already responding to us with a few words and telling us what she wants. Livia really didn't start talking until she was close to 2. I've also come to a realization that it hasn't been until just recently that I feel like I've bonded with Finley. This is so hard to say out loud. Unfortunately, this past year has been consumed with devastation, coping, learning, and finding a way to just do something to fight MPS. Livia's diagnosis came when Finley was 8 weeks old. What I remember the most of her infancy is sitting on the couch with her scared to death that she might be affected and watching Livia play thinking about this awful disease she is affected with. I feel so bad that Finley's first year was clouded with MPS. I know I shouldn't feel bad, but I do. This is another example of having one foot in one world, and one foot in the other world. I have to find a balance and not feel guilty about anything. After all, Jake and I are doing our best to do whatever is needed for both of our girls. I also have to say that I know I'm lucky to be in both of these worlds. You think I'm crazy for saying that? I don't. Sanfilippo is going to help us be better people. Sanfilippo is going to help this "normal world" put what Laura Ingalls Wilder said in her quote into action.

I've gotten in the habit of starting a blog and having to walk away for one reason or another. Be it dirty diaper, having to clear my thoughts or wipe away tears, I haven't typed a blog in one sitting for awhile. We were just on vacation in Minnesota with Jake's family this past week. It was nice to get away and be together. We enjoyed the days with swimming in the lake, fishing, boating/tubing, playing games, camp fire, good food and drinks and even running on occasion! While we were in Brainerd, Mn we hit the one year diagnosis day. It was a hard morning for me because I kept re-playing that day and the surrounding days that occurred one year ago. It was haunting. I cried with Jake. I called my mom and cried with her for a bit. I gave Livia a hug and told her how much I loved her and how proud I was to be her mommy. I re-gained my strength from her loving ways and enjoyed the rest of the day. I actually spent most of the day on the lake tubing. It was a good distraction.

Another situation to report that is one to mark down for the record blog.............This past Saturday at the Roscoe Rush football game, a lady who is the mother of the owner of Texas Roadhouse in Rockford introduced herself to us. Texas Roadhouse is providing peanuts for us to sell at the games. We get 100% of the profit. It's very generous of them! Anyway, I hate that I can't remember her name, but she read the print out about Livia that we have on the donation bucket. After reading it she took my hand and told me that being a mother is the biggest and best blessing that anyone could have. That God is good and good things will come our way. She was so sincere and loving...........I instantly started crying. What she said next really hit home and it's something that I will always remember. She told me that worrying is an insult to God. I appreciate her words so much. I told Jake that that situation means more than someone throwing a dollar in the bucket and just walking away. Not that I don't appreciate every dollar we get, because I do. It's what we're working towards in order to help find a cure. It just means so much to know people's heart and to know they care and love us. Thank you for being so honest with me.

Matthew 6:25-27, "Therefore, I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your Heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life?"

Overwhelming feelings

2010-06-28T20:36:00.003-05:00

I was doing well at the beginning of this week. I felt so thankful and overwhelmed with all the feelings of gratitude I have for everything people do for us. Donations are coming in, slowly.........but coming in. T-shirts are selling well, coffee is getting there and our donation bucket is doing well at the football games. A player from the team put up a donation bucket at a gas station, a success. For all of this I am so thankful. I'm thankful for all the fund raising ideas that are coming in. I'm thankful to our family for making trips here to help us out. I'm thankful for people who aren't afraid to talk to me about our situation. It's not a fun feeling to feel alone in this. On the other hand, 4 children with Sanfilippo have died in the past 2 weeks. I'm so saddened by this. It scares me. One of the families is from Wisconsin. I received an email from the MPS society that the family wants to donate a new wheelchair, feeding tube supplies and various other "materials" that are new or barely used to another family in the Illinois or Wisconsin area. I had a couple reactions to this email. My first reaction was of course sadness for the family. I was a little shocked because we are in no need of this equipment and it made me think we may need this stuff in the future. I also had a strong desire to reach out to this family to in some way maybe be a support for them. I wanted to tell them how sorry I was to hear about their child. I wanted to know about their child. Just know them. I HATE THIS. I hate having to work around this pit in my stomach everyday. Livia is my heart, she has my heart. She and Finley are my world and all I want for both of them is to be healthy and happy. I just want my children to LIV. I will do anything to fight for her life. My desire is stronger than ever to do something, anything to raise money for research. With Jake laid up for the summer (bucklehorn tear of the meniscus, avulsion fracture of the patellar tendon, bone bruise and complete tear of the ACL) he will be getting lots of computer assignments from me to help our cause. I'm starting to realize that I'm going to have to delegate some tasks to others in order to get everything done. I know I can't do it all by myself. (Volunteers anyone????) With all that said, we are going to make the most of our days and the most of this summer. I've said it before.........each day is truly a blessing for anyone.

Psalm 136:1

Give thanks to the Lord, for he is good, for his steadfast love endures forever.

Bundled: Blessings & Burden

2010-06-10T21:11:00.005-05:00

I wish I could understand what makes a good day verses a bad day. How is it that I can be on top of this world ready to face anything with my head held high one day, and the next, cry at the drop of a hat and feel like my tiny accomplishments aren't going to make a bit of difference? I can recognize all the blessings in my life. I'm so lucky that this new life has provided cleansed and renewed eyes that are wide open all the time. Unfortunately, it's taken a tragedy for this to happen. This burden that hangs over my head all the time can get in the way or cause a blind spot. I fight with all my worth to have good days. It's easy when I'm surrounded by laughter and love. All of this can be a bit overwhelming at times. Especially when they are bundled: these blessings and burden. I'm emotionally drained balancing it all. I'm extremely thankful and happy to have good things coming our way in the name of our daughter. I'm anxious and worried about getting everything done and planned to reach our goals. I'm sad and scared about the future. I'm tired of fighting with myself in my head about what my priorities should be. It's all so much when all I really want to do is not worry and just play with my kids. With all of that said, I know that I can handle it. I know I've been given the tools, the mind, and the heart to make it through this.

Some blessings:
Last Saturday was the first home game for the Roscoe Rush football team. Our friends the Kelly's (owner's of the team) have graciously allowed Liv Life to set up a booth during their games. They have organized a radio commercial through espn 1380, the foundation is being announced during the games and they have written a newspaper article about another fundraiser we are doing. This is only the beginning of "events" they are helping us with. It's a good example of selflessness and generosity that more people need to take note of. Thank you for helping us and loving our kids!!!

People are starting to approach me about my blog or about the foundation. It is such a blessing to know that in some small way I'm helping someone else through my honesty. I've met some really amazing people that in their own ways have helped me and inspired me. I'm so fortunate to have people that really do care and want to help. I can't do this alone.........so thank you for your honesty and thank you for just talking to me!!!!!

Livia and Finley are both doing so well. Jake is almost done with school. His hours have been much better and he's been home in the early afternoon. This summer already seems to be jammed packed with things to do; surgery, appointments, vacations, fund raising events etc. etc. I'd much rather be busy than not. As hard as it is sometimes to balance all of my emotional to-do's, it keeps me busy.

Upcoming fundraisers and events that keep us focused on our goals. I feel more in control about the situation doing SOMETHING. I feel like my goals are big, but why not aim high? I have nothing to lose. My latest thought has been "mission for a million." This is very ambitious, but like I said, I have nothing to lose. I really feel like if we can find the best way to market Liv Life or touch the right person something big will come our way. I at least have to try.

Rock Bottom

2010-06-03T12:53:00.002-05:00

How do you know when you're about to hit rock bottom? When do you say enough is enough, I need help and I feel like I could snap at any moment? I should be able to do this, right? I should be able to manage a household, raise happy and respectful children, please my husband, keep "life" in order and keep my sanity all at once. Everyone else does it, so I should be able to. How do I keep this sadness and hurt from raising up through my everyday to-do's? I have to be happy and cherish every moment that I'm given with my kids. As Jake tells me, if you dwell on the bad then all of this is going to pass me by. He's right. I can't dwell on MY sadness. After all, this isn't about me. I'm struggling to find a balance. Why does it feel like EVERYTHING in my life is not going the way I signed up for it to go? I try so hard to paint my exterior happy. I'm thinking I need a new paint job. Proverbs 17:22 "A cheerful disposition is good for your health; gloom and doom leave you bone-tired." I seem to be saying this over and over again to myself. It really is true. When I am "in a mood" I'm not the mother, wife, sister or friend I want to be. I reflect on my good days when I can push the sadness away and I am me. How do I find this balance everyday? How do I let the other stress' (the one's that everyone else deals with) and the stress of having a sick child not affect my living? I'm allowed to be sad, right? I don't feel like I have time to be sad. After all, time is not on my side. I guess I have no choice but to buck up and do my best. One of my biggest fears is regret. I don't want to ever look back on my life and regret anything..............especially with my children. I want them to enjoy their childhood and have a mom that they will be proud of. So with that said, I'm pushing away this sadness, painting myself happy and leaving my life in HIS hands. I've wasted enough time on myself these past few days. It's time to LIV LIFE!

Dear Lord,
I can see the value of life through my children. Forgive me for overlooking today and each blessing you put before me. Teach me to be patient with all of life's stress'. Help me to find patients in every avenue of my life. Let me know that it's ok to ask for help. Lord, I lift this all to you because I know you are carrying all of my burden's for me. Amen

Honesty

2010-05-22T06:29:00.004-05:00

My life is pretty much an open book. I really don't mind this. I've never really felt like a private person. I'd much rather talk about what's going on than internalize my feelings. The same thing applies with Liv's life. I always want to be approachable when it comes to what's going on in her life. If someone has a question, I'd much rather them come to me so we can talk about it. Nothing is easy with Sanfilippo. So much is unknown. We really don't know how it's going to affect her. I pray so hard that it be God's will for something to come in her lifetime that will save her life. I can't imagine not having her. Lately I've been feeling a little overwhelmed with everything in our life. Good and bad. We've had a lot of good lately which is reason to celebrate. We have an amazing group of friends that have rallied around us with some great ideas on how to fight for Liv. To sit in a room surrounded by some really big football guys, a coffee guy, other moms and dads, grandma's and grandpa's, and friends that really love us is an emotion I wish more people could get to experience. I'm overwhelmed with the good because there is sooooo much to do and not enough hours in the day to get it all complete. I don't want to let anyone down. I want to get everything done and start seeing results. It's so important for me to make this foundation a success for Livia and other MPS families. I can't and won't just sit back and do nothing. When the good overwhelming feelings come through it fuels my fire to fight even harder. When I get to see God's work being done through my daughter, it makes me proud and happy. It really is an amazing thing to be able to recognize. It's helped me to embrace the place that we are in this "new" life. I trust Him and I know that His hands are strong and will carry this burden for me. Romans 8:28 And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.

DONATION SPOT

2010-05-12T20:26:00.002-05:00

We are working on getting the donation spot up and going on the website. We are able to take donations to the foundation. Checks made out to Liv Life Foundation or cash can be sent to 11098 Lemon Grass Ln. Roscoe, Il 61073. Electronic debit/credit card capability will be coming soon! Your donation may be tax deductible. Talk with your tax agent to find out. Liv Life Foundation will be a 501(c)(3) organization. Thank you so much for your support.

13.1

2010-05-03T13:43:00.006-05:00

Saturday, May 1st 2010 Jake and I accomplished something that we both thought would never be possible. Crossing the finish line in Memorial Stadium was such a great sense of accomplishment. I really feel like this is the first thing I've ever really been this proud of myself for. I can recognize that I worked really hard and did what I set out to achieve. I think through this process I've really found out who I am and what I'm capable of. This past year has been such a life altering, devastating, eye-opening, soul finding kind of year. It's also been a year of seeing God's work and glory really shine through in some amazing people including ourselves. This new path we are on has led us to meet some wonderful and inspiring people. Having these "new eyes" makes us recognize the good and really know what is important. When we crossed the finish line we found our family and saw our girls right away. It was so emotional to see a section of our Livlife black tshirts and Livia waving real big. They let Livia down onto the field and she ran into my arms. Of course I started weeping and all these emotions I was having were so REAL. I can honestly say I embraced every moment and still get teary eyed thinking about how proud I felt at that very moment. I wasn't only proud of myself and Jake for accomplishing this, but I was proud of being Livia's and Finley's mom. I was proud of family and friends for being there to support us and to represent Livlife. I was proud of the day and what it meant to me. As Jake and I walked away from our group we had to stand in a line to get out of the stadium and get our bags. As we were standing in this line congratulating one another going between laughing and crying, I looked at Jake during one of my crying moments and asked him if it would feel this good when they find a cure for MPS? He said.........it will feel better. It will feel better, and I know that day will come. But for now, I'm going to try to find that good emotion in some part of each of my days. Today I get to hear my girls laugh, see them play together and feel that love like I finished a 13.1 mile race and that's all I need to know that today is worth it and today is what I'm proud of!

Will you be here tomorrow

2010-04-26T07:21:00.003-05:00

Let's face it, no one can really answer this question. Our hope is yes, of course I'll be here tomorrow. My thoughts on this are not so much for myself, but for Liv. I realize this is a pretty awful thing to think about and pretty depressing for a Monday morning, but this is my reality. In the back of my mind is a constant thought of losing my child. A pit in my heart that no one should have to feel. I try so hard to not let this thought surface because I can feel myself going to a dark place. The truth is, it's always there in some way. Last night Jake and I watched "The Blind Side." What a great feel good movie. I cried through most of it. During the movie (I can't tell you at what point) I felt anxious about Livia not being with me. I do mean in that moment in time, not a thought of her being gone forever. I knew she was comfortable in her bed, but I needed her with me. I wanted to feel the warmth of her body and smell her sweet smell. I was surrounded by her pictures, and in a way, it made it worse. Then I started thinking about her not being there like really not being there. Then it felt really bad. I can't IMAGINE not holding her or hearing her. I had this thought awhile back when Livia was in a different car than us. It was Jake, Finley and I and the thought came to me that someday it may be like this, just the three of us in the car. It's so hard to imagine that time and I know I shouldn't because no one REALLY knows what our time looks like on the earth. We can only hope that tomorrow will come for us and we can be happy about yesterday. As dark and as hard as these thoughts can be on me, I can find the light in all of it. I can LIV today so full and make it a point to love my kids just a little harder. I find joy in the smallest things that before diagnosis I would have taken for granted. I love watching my girls eat! Even in the frustrating moments of dirty diapers, teething and loads and loads of laundry............I'm lucky to experience it. Don't get me wrong, I'm human and I get angry and frustrated but I have a constant reminder to just take a deep breath, get over it and move on. There are more important things to put my energy towards like living my best life today and praying to be blessed with tomorrow. I love you Livia and Finley more than you'll ever know. You make my today worth it!

Philippians 4:6
"Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God."

www.livlife.us

2010-04-22T14:39:00.003-05:00

This is so overdue..............I really have no excuse other than I just haven't made the time to blog. We've had so much going on in our lives. I've found that keeping busy makes me a happier person. I'm not one to sit still for very long. We have been so blessed with some AMAZING, self-less people. Our friends the Phillip's have a church in Poplar Grove called The Grove Fellowship. Jake and Brian became instant friends when we moved here. Brian helped with a group Jake is involved with at the High School, Change Inc. Brian has an amazing staff that volunteered to help us get our beautiful website going. Max and Matt helped design and start the site. We had a couple face to face meetings where I laid out what we were looking to do and gave them my ideas. They took everything I told them and enhanced it more than I could have expected. Our logo that Max designed is so perfect. Having something like this has enabled Jake and I to work towards something. Before our website I felt so out of control and lost because there was nothing I could do. Having this site and starting our foundation is bringing a little bit of that control back. I feel like we are working towards something. We are bringing awareness to this scary disorder. We are able to tell our story and be proud of it. I am so proud of my family and my daughters. My hopes and plans for this site are to of course bring awareness. I also hope that once we become not-for-profit, we will be able to have fundraisers and events to make money for research. I have so many ideas! With all that said, thank you to the Phillip's for always being there for us. Brian and Kristy are inspiring and make us want to be better people. Max and Matt, thank you for your self-less desire to want to help us. You will forever have a special place in my heart.

We are so excited that we have our first batch of T-shirts made with our logo on them. They are done in time for the Illinois marathon. Dad and Carol, thank you so much for helping us get this task accomplished. I haven't seen them yet, but from Carol's message and talking to my dad today about it, I hear they are AWESOME! I love you guys so much and am so appreciative of this.

I have so much more to write, but feel like it all doesn't belong in this post. I'm working on making more time for this blog. It feels good to write, and I know people like to hear what's going on with us. Thank you to everyone who's taken the time to look at our website. If you haven't seen it, check it out..................www.livlife.us!

BEAUTIFUL

2010-03-18T12:02:00.002-05:00

It has been so refreshing to wake up with the sun beaming in. It makes the house feel so good and it makes my attitude that much better. Livia and I were able to spend about 3 hours outside together. Finley joined in when she got up from her nap. It was so great to watch Livia play on her swing set and run around the yard. We went on a walk when Finley woke up and stopped at a couple neighbor's houses and the kids played together. I love watching Livia interact with other children. She thrives around her friends. The fresh air and the sunshine felt so good. I think I even got a little color on my cheeks. Livia was so tired at bedtime. So was mommy! I'm really looking forward to the summer when Jake can join us for this fun. Yesterday was a really BEAUTIFUL day with my two BEAUTIFUL girls!

Quiet

2010-03-12T06:06:00.003-06:00

The house is quiet, both girls are sound asleep. All I hear is breathing through the monitors, and Lola snoring. This is a hard time for me. This is when my mind wonders and my thoughts consume me. It's one of those moments where I think to myself, a time like this before Liv's diagnosis I would be like............yes! Peace and quiet for mama! Not that I don't need my own space and time, but I'd much rather have someone up with me right now. I'd rather be listening to a baby cry or changing a diaper or playing than having these awful thoughts. My girls help me get through these tough times. Livia's laughs and babbles are music to my ears. Finley's response to me and the games we play are so precious. Lately Livia has been coming up to me when I'm doing another task, like washing the dishes, and pulling my body around and tugging on my clothes saying "come on mama." Or, if she is having fun doing something on her own she'll just motion me with her hands to "come on"! I absolutely love this. I love that she wants to play pilates with me. It's a modified version of airplane. Finley's personality is shining. She recognizes when she makes me laugh, and then ham's it up even more. Her 4 front teeth show now when she smiles. I love to tickle her tummy. Why does life have to be so unfair? I have these precious wonderful gifts, but in the background is this ugly and difficult thing. I try so hard to push it aside, to be strong. This is a good time in our life, and in some ways I think I might be in a little bit of denial about the whole thing. It's better when I can take it one day at a time and not think about tomorrow, but some days, like now, I have a hard time controlling my mind.

"CRY".................thank goodness!

Awareness

2010-03-09T06:21:00.002-06:00

This is such a critical time, and awareness is what we need! There is hope for a cure or a treatment on the horizon. As a family, we have so many ideas and with our new website we will be able to promote awareness and fundraise. This was on TV not long ago and it's a great way to spread the word. Please join us in the fight to save Liv's life. Check out the link's below to see what some other people are doing to raise awareness and fight for their own children's lives as well as all children affected with this unfair, nasty disorder. Please feel free to contribute your ideas to spreading awareness or good fundraising ideas. kelfish121880@hotmail.com

www.couragemovie.com

http://abcnews.go.com/Health/video/graces-story-10012107&tab=9482931&section=1206835&playlist=3547557&page=1

Perspective

2010-03-05T14:20:00.002-06:00

The ability to perceive things in their actual interrelations or comparative importance. This is one definition of the word perspective that I'm keeping in mind.
We all have things in our lives that we struggle with. Whether it be our weight, finances, dedications, friendships, relationships, addictions or even our day to day tasks. Something in your life is a struggle. I've had a few issues that I've been struggling with lately, and one of them is something that has been on my mind almost daily since Liv's diagnosis. It's a friendship that I am missing terribly, but I feel like I shouldn't be the one to come forward. I have to come clean about something, and most of you who know me might already know this. I am a stubborn person. I have a hard time admitting when I'm wrong or backing down from a thought that I think is right. In a way I'm glad I'm like this because it makes me a strong person. However, it can bite me if I'm not careful. This past weekend, I was given a perspective on this situation by someone that I respect their opinion and loved what they had to say to me. I was given another perspective just yesterday during a play date by another friend that I am just getting to know. Both of these women had really good things to say, and I learned a lot during both of these situations. The weekend perspective was that I need to be the bigger person and make the first step to rekindling my missed friendship. I don't know how my missed friend is feeling or what the situation was in her life to make her make the choices she made regarding our friendship. In the end, if I really miss my friend and cherish our relationship then I need to tell her. The second perspective that I learned jut yesterday was that people don't deserve to be judged. Someone might seem unapproachable but turn out to be just the type of person you need in your life. It's like how the old saying goes, "don't judge a book by it's cover." It's simple but true. You never know what someone is going through in their life to make them they way they are.
I try to put myself in other people's shoes regarding our situation. I probably wouldn't know what to say or know the best way to ask someone about their daughter's terminal disorder. It's a very scary thing. However, I'm still the same Kelly Fish Hubert that I was in kindergarten, and I do miss my friend. I'm working on that stubborn person inside of me and figuring out how to make the first step. I think this might be a baby step, but it's not really a fair one because I don't know if she even reads this. I know I should just pick up the phone and call, but that seems too hard. Maybe a letter or email will be what I do. Either way, I need to do it. Kristy, you are my sister in Christ and I love you and Brian for who you are and the good things you are doing in your life. Thank you for the advice, I do respect what you have to say.

For Brittany

Amazed

2010-02-26T14:42:00.003-06:00

I often wonder what life would be like if we didn't have Sanfilippo in our life. It's been my goal to find the positive in this "new life" we've been given. Some days it's really hard. It's especially hard when the dark out weighs the light. However, I've found that the light prevails and there is so much positive to focus on. For example, Sanfilippo has brought knowledge, compassion, strength and focus into my life. Because of all of these things I'm a better person. I can be a better mother, sister, wife and daughter. Another example, are the people that we have met along our way. The people that we don't even know are out there, that our story is touching them in some way. This amazes me. We have been so fortunate to meet strong and encouraging people that inspire us and help us through our tough times. We've made friends along the way that are truly a God send! I've been so touched by the family members that are out there that want to help make a difference by bringing awareness to the people around them. My cousin Allison is making purple bracelets for all of her friends to help spread the word about this ugly disorder. She has touched my heart! I've been passing letters (hand-written!!!!) between myself and another cousin. This is something I look forward too, and another little thing that means so much. Livia is touching the lives of so many people and I can't help but feel like it is a blessing. I'd give anything to trade places with her or just take it away all together, but I can't. I've been given insight into what our future might look like. It's scary, but I'm able to cherish all of these blessings and LIV each day with purpose. I have no time for drama, excuses or petty fights. So, because of Sanfilippo I feel, in a way, I've been cleansed of negativity. With saying that, it's not like I skip around all day humming to myself and feeling on top of the world. I'm far from that. I just have a new sensitivity to my surroundings. I see things so differently now and I appreciate the goodness and kindness of this world. Life is about choices, I can choose to lay in bed and cry all the time or I can choose to pick myself up and enjoy what life has to offer. We only have one life, don't you think we should make it a good one?

2010-02-22T14:57:00.004-06:00

Here are some updated pics of the girls. They are really starting to interact and play together. Finley is trying so hard to keep up with her big sister. She is crawling, or so it resembles a crawl, and walking around furniture. Time really goes too fast, but each day my girls are doing something new. For this I'm happy and excited to show off these pictures.

New Songs

2010-02-22T14:14:00.003-06:00

I came across this song by Brett Dennen a few months ago. I was in my bathroom getting ready for something and I had one of the music stations on that comes with our satellite. I was listening to music not really paying much attention to what was playing. This song "By and By" came on and for some reason it just caught my attention and I stopped what I was doing to make sure and catch who was signing it and write down the title. My first thoughts when listening to the words were of Stefanie and Justin. They have become (in such a short amount of time) more than just friends! They are real people that have inspired, comforted and loved us through this difficult time. It is such a blessing that through this terrible diagnosis, that both of our families are going through, we have been lead to one another. I can't imagine going through this without having someone that can relate to exactly what we are going through. So I dedicate this song to them beacuse they have touched our lives and make us want to be better people. I love you Stef, Jut, Jay and Bee-Ba!

The other song is a Hymn that was sung at our home church this past Sunday. I love the church that we are attending in Rockford, but there is no place like home! Something that I miss so much is singing from a Hymnal. It's not like the songs that we sing at Rockford First aren't great, and don't speak to me because they do. However, I really miss Hymns. This particular Hymn, the Hymn of Promise really touched me and my life. Unfortunatly I can't download this song to my page directly, so I'll write the lyrics at the end of my post. I think I'm going to go buy a Hymn and start reading them.

In the bulb there is a flower; In the seed, an apple tree; In cocoons, a hidden promise: Butterflies will soon be free!

In the cold and snow of winter, There's a sping that waits to be, Unrevealed until its season, Something God alone can see.

There's a song in every silence, Seeking word and melody; There's a dawn in every darkness, bringing hope to you and me.

From the past will come the future; What it holds, a mystery, Unrevealed until its season, Something God alone can see.

In our end is our begining; In our time, infinity. In our doubt, there is believing; In our life, eternity.

In our death, a resurrection; At the last, a victoryUnrevealed until its season, Something God alone can see.

Comfort

2010-02-10T20:42:00.005-06:00

Since Christmas I feel like I've been living each day in a bit of denial. It's easy to do since we have such a great routine. I feel like I've put MPS away to try to bring back myself. I was tired of being sad everyday. I was tired of looking at Liv and feeling that pit in my stomach. For awhile, it worked.

Livia had her preschool screening last week. I was extremely nervous about this because I knew that I was going to have to talk about her condition. George and Cindy came up to stay with Finley so that I could give my full attention to this endeavor. When we got to the screening they took us to a table that had all of the children's files. They got Livia's file out and right there was an Internet print out that said Sanfilippo Syndrome and a bunch of highlighted sections. This isn't how I imagined this would go. We then went into a room with two very nice ladies. One was a speech therapist, the other was the school psychologist (this was just by chance that we got her). They started talking to me about what Livia was capable of (at this point they did not know about her condition). I was trying so hard not to lose it, I didn't want to cry. I lost that battle. I started crying and trying to explain MPS. I gave them a booklet on SS. They were both very kind and very interested. I gained my composure and was able to talk with them. Livia was happy and content the entire time. I was asked to leave so they could spend some time with Liv. She waved and said bye-bye mama. I waited for them to come get me and we were on to the next step of the screening. When we were done I had errands to run to get ready for Livia's party. My first stop was the bank. I sat in the parking lot and cried. The thoughts that ran through my mind were that I could not do this. I felt like I was not going to be capable to live this life. These are terrible, awful thoughts that no one should have. All this time Livia was in the back seat reading a book and eating a snack. She was happy. This preschool screening brought me back to reality. I called my dear friend Stefanie and vented to her since I knew she would completely get what I was saying and how I was feeling. She helped me to calm down and reassured me that everything was going to be ok. It's hard to face your fears and this was one of my first fears. I also realized that this is my reality and God gave me a responsibility to take care of these angels that He put in my life. I know that Jake and I are going to give our girls the best life possible. I know that I am capable of providing any type of care that will be needed during this life. God knows that we are strong and that we can face this. We have no other option.

Awhile ago I posted a question on Facebook. I asked "What is your comfort?" I wasn't surprised with every one's answers. They were mostly answers of family and food. I agree, these are comforts to me as well. I was surprised that only one person, my sister, mentioned God. I've found so much comfort in our Lord that I'm even surprised by this. I say this because when I was younger I had a really bad experience at church. I felt pushed away and I didn't feel welcome. I was a young kid that didn't understand this. I felt very uncomfortable and confused. Going to church became a fight, at times, with my parents. I wasn't getting much out of going, and why would I want to be in a place that I felt like I wasn't welcome? I look back on these situations and it saddens me that I was lost in a place that was suppose to be a comfort. Jake, the girls and I have been going to Rockford First. We have visited so many different churches in the area, but Rockford First is a fit for us. One of the recent series was 24/7 and the message was "comfort." It was on the book of Corinthians. This was such a powerful message to me. I became so inspired and knew I could face whatever challenges are put in my life. I know that the problems in my life are not bigger than God. "All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort." (2 Corinthians 1:3) Through this journey I've discovered so much about myself. I've discovered a person within myself that I didn't know existed. I've found a new Faith, that I'm not ashamed of, I've found focus, strength and more love that I can't even explain. I've also learned that there is so much hurt in this world. I feel like everyone has some kind of heart ache. Maybe it's a situation like what we are going through, a troubled marriage, the loss of a loved one, cancer, addiction, miscarriage, the list could go on and on. Why is it that we have to experience these situations? Maybe they are situations that are to teach us something. Maybe God is watching how we are handling ourselves and the people around us. In my opinion, God does not put these situations in our life. I do know that when we discover that God is our source of comfort, we should help others do the same. Pastor Jeremy said that being comforted may mean that God gives you the ability and strength to overcome a very difficult path. The problem doesn't go away, but God inside of you becomes larger that the problem. This is my comfort and this is what I have to hold onto.

Livia is 3 now, and her birthday was a huge success. We had a house full of happy people that came to celebrate with us. Jake and I put on a small magic show to go along with the Abby Cadabby theme. Jake was so funny and had the entire house laughing. He is a natural born entertainer, and was definitely in his element. Livia had some of her friends over and she loved showing them her toys and running up and down the hallway. I loved having a house full of friends and family. I love to entertain and feed people. I had so much good help that the day was stress free!

Finley is growing by leaps and bounds. She still has a "fro-hawk" or so her daddy calls her spiky hair. It's getting longer and thicker in the back, so I'm sure it's going to lay down any day. I really don't want it to lay down, it's really cute! She is crawling and just the other day I sat her by the couch and went into the kitchen and looked back at her and she was standing at the couch! I was so surprised I cried a little! She has such a great personality, and I can tell that she is going to be outgoing and independent. She is such a blessing, and she helps me to get through some of the hard days.

Jake and I are both preparing for the Illinois Marathon (Half) in May. I'm looking forward to warmer weather and getting outside for some fresh air. This is such a hard time of the year. I love the snow when we first get it, but I'm ready for it to be gone during February. I'm getting spring fever really bad!

I have to say one more thing before I turn in for the evening. I'm so appreciative to all the people that don't even know us, or know us from a friend of a friend that reach out to us. Just today I got a very nice FB message from the wife of a guy Jake went to HS with. They don't live far from us and often travel right by Roscoe to go to Chicago. She kindly told me how she reads my blog, would love to meet us and prays for us everyday. I remember meeting her husband once, but this small act of telling me she thinks about us means so much. I can't even explain how much this helps me. I cried when I read her message, but I can honestly say that it made my day. Thank you to everyone out there that cares. I care about you too!

January 19

2010-01-19T21:30:00.004-06:00

Having a two, almost three year old and an 8month old is hard work. Three year old's like to get into things, like to test the waters and boundaries. This particular three year old likes to bite and when she is frustrated sometimes reverts to head-butting. I can't help but react to these behaviors in a way that I think most parents would. Sometimes I physically remove her from a situation and firmly tell her what she did was wrong. When I'm dealing with a teething/fussy baby and a bag of chips gets spilled on the floor I can't help but get angry and raise my voice. Today Livia bit me, and this is not typical behavior from her. I hate to say that Jake is the one that she tends to bite and be more aggressive towards. When Liv bit me I was so shocked, and hurt, that I swatted her mouth. Not hard, but enough that it shocked her and she cried. All day today I've felt like every time I'd get after her, and she never really did anything real bad, but I'd feel extremely guilty for disciplining her. I know that in the back of my mind I'm thinking......please don't remember me like this. Don't let this "good time" in your life be memories of your mommy getting mad at you. As I write this I feel really stupid about having these thoughts. We hardly ever have days like today. Most days are spent laughing and having a good time. We did laugh today, but I was in a bad spot all day. One of my biggest fears is that one day I'm going to look back and have regrets. I desperately want to make Livia's and Finley's life precious, meaningful, important and memorable. How do I find the balance and not feel guilty when I have to discipline Livia? I know this phase will pass when Finley isn't so needy, but I don't want her baby phase to end. I desperately want to hold on to this time. I think this is why I have my bad days. My mind and my needs go so back and forth. Having this helpless and out of control feeling is a bad emotion to have.

I miss my family terribly. I miss my friends that I don't get to see. I even miss my friends that have chosen to step out of my life. This pains me so bad. I wonder so often how it can be so easy to just ignore. I cry about it more than I'd like to admit. However, it fuels my fight and ironically gives me inspiration.

I needed my mom so bad today. I desperately wanted just time with her. No kids, no husbands, just her and I. I can't even remember when the last time just the two of us had time together. I have a special relationship with both of my parents. I view them with so much respect, yet since they got divorced they are different people. They are still my mom and dad, but its taken time for me to learn how to handle a divorce as an adult. I see them differently than I did when I was a kid. Not bad, just different. I know them differently now. I love them both so much and want nothing more than for them to be happy. OK, how did I get off on this subject? I love you mom and dad. I miss you and Audra so much it hurts. I miss our family. Some of my best childhood memories are 4th street and the farm.

Ultimately I know tomorrow will be a better day. I can reflect on today and learn what I don't want to do tomorrow.

Yesterday is but a dream, tomorrow but a vision.
But today well lived makes every yesterday a dream of happiness,
and every tomorrow a vision of hope.

Indian Proverb

Just one day...........at a time

2010-01-11T20:56:00.002-06:00

We went to Children's Memorial today to meet Dr. Burton. When we first got Livia's diagnosis, the MPS society had recommended we see her. After the Disney conference, Jake and I decided that we needed to go see her because we are Livia's only advocates and we have to do what is best for her. We need to be on a course. Dr. Burton has mapped out a course that we feel good about. We didn't really learn anything new, but we do feel like we are a part of a team that is going to get things done.

I can't help but be really sad right now. I had such a positive attitude this morning about our appointment. I had a feeling that we were going to go see her and she was going to give us something new or by some miracle tell us that Livia was OK and some horrible mistake was made. I now think about that feeling and realize how silly I was to think that way. I'm not in denial about this diagnosis, its just that I want so bad to take it away.

Livia is such a trooper. Our apt. was at 1pm, nap time. She was a little grumpy with Dr. Burton, she just didn't want her belly poked. Dr. Burton kept telling Livia how pretty she was and that she LOVED her hair. I really like Dr. Burton. She was very positive and had a great southern accent! She answered our questions and mapped out a course that Jake and I feel good about.

Finley is also a little trooper. She was so good and slept comfortably in her daddy's arms while we talked with the Dr. I hope one day she knows just how important she is in all of this. We are so lucky to have her, she really is a miracle. I have to figure out how to keep life "normal" for her. I have to make sure she feels special and important. We are going to have so many issues to deal with with Liv. I pray that Finley is patient. I pray that she is happy and loves her life.

It's not often that I want the day to end. My grandma once said to me that she thought the days were long for me. They aren't. The days go by so fast, and I often dread the night and dread going to sleep. Not today. I'm ready for tomorrow to be here. I'm ready to start a new day with the hope that I can find it within myself that positive person I desire to be. I need to get on that treadmill and run this pain away. I hope tomorrow I find inspiration and strength. I take it just one day at a time, tomorrow will be a good day............that is my goal.

Devotional

2010-01-06T21:53:00.002-06:00

Our dear friends Stefanie and Justin sent us a new Devotional that Jake and I started Jan. 1st. The title of the devotional is "Streams in the Desert" by L.B. Cowman. Tonight's devotional hit home for me. It was a reminder that we must have a living grace in order to do life's work and calling.
I have a hard time putting aside thinking about our future. This can impact me in bad ways. It can consume my thoughts and make me worry about unknowns. I know I shouldn't do this. No one knows what their future holds. Another friend of mine who has a child with MPS just emailed me and said something that I already knew, but brought my attention back to this. MPS affects everyone differently. Who knows, a treatment or maybe even a cure could come along in Livia's life. This devotional reminded me that no matter what goes on in my life, God will be there for me and my family and He will lead us down the right path.

"When you pass through the waters"
Deep the waves may be and cold,
But Jehovah is our refuge,
And His promise is our hold;
For the Lord Himself has said it,
He, the faithful God and true:
"When you come to the waters
You will not go down, BUT THROUGH."

Seas of sorrow, seas of trial,
Bitter anguish, fiercest pain,
Rolling surges of temptation
Sweeping over heart and brain-
They will never overflow us
For we know His word is true;
All His waves and all His billows
He will lead us safely THROUGH.

Threatening breakers of destruction,
Doubt's insidious undertow,
Will not sink us, will not drag us
Out to ocean depths of woe;
For His promise will sustain us,
Praise the Lord, whose Word is true!
We will not go down, or under,
For He says, "You will pass THROUGH."
Annie Johnson Flint

I hope we can pass through this with our heads held high. I hope we can sustain this pain and unknown with the trust that we will not sink. My hope is something that inspires me to make it through each and every day.

I love you Livia, I love you Finley..................both of you have brought so much love into my heart it hurts. You both have created a new life for me. I wouldn't trade this life for anything. Having the two of you is a dream come true. Not only is it a dream come true, but you have helped create new dreams. Through all of this we are going to do good.

Opportunity

2010-01-03T08:00:00.000-06:00

Livia's diagnosis has created a new life for us. A life that has opened our eyes WIDE open. It has also brought many opportunities. These opportunities have ranged from small moments to big trips like going to Disney, to newspaper articles, to barn quilts, to prayer blankets and dolls, to meeting new and amazing people and to opening our hearts to this world we live in.

Disney was such a whirlwind of emotions. I was so incredibly nervous about this trip. I wanted to go so bad because I wanted all the info I could get. I wanted to meet some of the people face to face that I had been corresponding with over email and phone. The nerves came in knowing that we would see children in later stages of this disorder, and I didn't know how I was going to handle it. I didn't know how I was going to simply address these kids. We got to Disney on a Tuesday. We met our wonderful friend John who lives in Tampa for dinner Tue. evening. It seemed like every child that walked or strolled by me I was looking at wondering if they were affected by MPS. I wanted so badly to "put it away" and just enjoy my time with my family at Disney, but we were there because of MPS and we were there to become aware. It was so much fun to watch Liv in an environment like Disney. She didn't have to be in a car seat in any of the buses, shuttles, etc. She really enjoyed that freedom! We went to Magic Kingdom on Wednesday and Animal Kingdom on Thursday. Thursday evening our reality was thrown right in our face. Thank goodness we were with Stef and Jut during this "breakout session." We had started seeing children around the resort, but didn't know exactly how they were affected. During this breakout session, all the different types of MPS went to their designated rooms for a meet and greet and to ask questions. The four of us, all newly diagnosed, walked into this room with families whose children has a terminal non curable disorder. Talk about nerves. We chose to sit behind a family that has a daughter and a son both affected in the late stages who are both wheelchair bound. There were children in all different stages. We heard questions and answers about things we probably weren't ready to hear. We heard about people's situations that are far off worse than ours. Jake had a hard time and had to excuse himself from the session. We just ended up leaving and finding our girls and moms and enjoyed Mickey's Magical Christmas. I often wonder how I don't go crazy with these up and down, in and out emotions. Writing this I can't help but snicker that I was at one of the happiest places on earth talking about our dying children. Friday was my birthday and our all day conference. Mom and Cindy, bless their hearts, took the girls for us and stayed at the resort while Jake and I were at the conference. I left the conference a couple times to feed Finley. It always worked out that I left during a break or during a session that I really didn't need to be at. We did learn a lot, and my science brain kicked on and I learned some really interesting things. We also learned that money rules the world and we are in a waiting game. Clinical trials for MPS II are starting within months, and if all goes well and good results occur then they will start trials for MPS III A specifically. I'm hopeful for this and can only hold onto that to get me through this. I want to say that meeting some of the MPS III kids that are in the middle and late stages I had somewhat of a peace about it. I talked to them, held their hands, and showed them the respect that I would want someone to show my daughter. I wanted to scoop all of them up and make everything better for them. Friday evening was a great dinner with the moms and then Jake and I met up with Stef and Jut for a night out at down town Disney. Saturday was our departure day. I am glad that we went. I'm so thankful for the families that we got to meet. There are some AMAZING people out there who have encouraged me and fueled my fight. I feel better being home and getting back into our routine. I'm aware of MPS every single day. But it's different when we are in Hubert world. Livia is such a bright spot in my world. She is an amazing child that has brought opportunities to my life that I didn't even know were out there. We've made life long friendships that are to be cherished. I've become a stronger person not only mindfully, but spiritually and even physically.

I have to thank my mom and Cindy for going on this trip with us. It would have been very difficult without their help. It was also really nice to make memories with them and enjoy the fun aspects of the trip. I also have to thank everyone that helped us financially with this trip. We could not have gotten to this conference without help. Everyone that chose to help us were very generous and loving. Thank you from the bottom of my heart.

Absent

2009-12-10T21:28:00.002-06:00

For those of you looking for a new post from me, I will be adding one soon. I've had lots of thoughts and ideas for a new post, but the time has been getting away from me to just sit down and do it. We are getting ready for our Disney trip, and I have been so mentally consumed with this. Please pray for us for safe travels, ease of nerves, fun times, wisdom and guidance. I'm really looking forward to this trip, but am a little nervous. I'll be excited to share the information we receive and share lots of photos as well.

I've been reflecting a lot on the meaning and word opportunities lately. This is the inspiration for my next post. This verse is something else that has been on my mind a lot.............What is faith? It is the confident assurance that what we hope for is going to happen. It is the evidence of things we cannot yet see. (Hebrews 11:1)

My drive

2009-12-01T21:40:00.002-06:00

There are times that I hear what other people are going through or just in socializing, I hear about things other people's children are doing. I'm not going to lie, after Pilate's class today I went into the locker room and cried. When class was over and I was talking with the instructor she started talking about her daughter and potty training. Another lady joined in the conversation and I just had to excuse myself because I realized this is one of the first things I'm not going to experience with Livia. I can remember not long ago sitting at a restaurant and a waiter started talking to Livia and she didn't really respond to him. He said to us, "don't worry when she's in college she'll never shut up." I've never had my heart sink so deep as these couple moments. I don't write these things to deter people from sharing their moments with their children. I don't want to push anyone away. I have such high hope that something is going to come along in Livia's life. This is my drive. I may experience these heart wrenching moments at times, but when I'm with Livia and Finley the rest of the world disappears and those girls light up my life. I can be so sad and down and just being in the presence of her makes everything better. I know what love is. I know how important it is to cherish moments and not sweat the small stuff.

Thankful..............

2009-11-26T14:40:00.002-06:00

Sometimes I find it ironic how I can be so thankful for my life. My thoughts often take me to really bad places. It's hard not to be fearful of our future.............however, shouldn't everyone be a bit fearful? I would imagine that a lot of people on the outside looking in on our life might wonder how we do it? I'm told often how strong I am. I'll tell you, I'm not always strong and I don't always want to be strong. This past month has really been a test of my strength. How many wrench's are going to be thrown at us until we catch a break? How much should one family have to endure? Heartache is not fun. You think your life is going to be perfect. No one teaches us how to prepare for or handle "situations." On the flip side, why shouldn't I be thankful? I have a family that anyone would be lucky to be a part of. I have the love and support of so many people. Our "situation" has made me grow as a person. That's something to be thankful for. I have two beautiful girls that motivate, inspire and teach me something new everyday. I can't help but be thankful. Life is full of choice's. I can choose to lay in bed and cry my life away, I can choose to die, or I can choose to embrace the life I have. I can choose to find the good in each day. I can choose to love with my entire being. I would much rather be thankful for what I have than be bitter and angry about it. I'm sure I'll have times when all I want to do is cry, be angry or question everything. I've come to realize that it is ok to do these things as long as I remember that I have a lot more to be thankful for than not. Today is Thanksgiving and I am most thankful for my family. I'm thankful for the person I am today. I'm thankful for our Lord and Savior. Without Him, none of this would be possible. I hope you can find what you are most thankful for and embrace it. Be with the ones you love the most. Be with the ones that make you feel loved.

For Audra...........I love you M2P.

Small gestures

2009-11-22T20:02:00.002-06:00

My friend Stefanie described in her blog her "new normal." She also talked about the fact that the cards, emails, and phone calls are starting to fade. This is true at our house also. I was thinking about this the other day, and it made me really sad. I know we have a tremendous amount of people who think of us everyday. This is such a comfort to know people really LOVE us, especially Livia, and are praying for us. I don't know how people can walk this journey without the Lord. Anyway, just the time I was sad and down about not hearing from anyone I get a small package in the mail. In the package was a hand written note (which are priceless and touch my heart) and an Oprah supplement to the 'O' magazine (small booklet). This booklet was something Elizabeth, the friend who sent this to me, leaned on when her sister Amber was battling her fight with cancer. I can tell this booklet was a support for Elizabeth by the dog eared pages and the wear of the book itself. I was so touched that Elizabeth would share this with me. Amber lost her battle with cancer and is now with our Lord. Amber left behind a family of her own. 3 beautiful children, a husband, 3 sisters, and her mother and father. I think of Amber often, and her family. Elizabeth and I were childhood friends, and I have so many memories of playing and swimming with her. She was a year older than me in HS. Elizabeth and I were not close in HS. Our interests were different and our paths drifted apart. It wasn't until Elizabeth sang at our wedding that we really connected again. We emailed a few times, and during Amber's battle we talked a couple times. Elizabeth became pregnant with her daughter Isla and we talked a few more times. Elizabeth has always quietly been a part of my life. She is someone who has stepped up and is walking this journey with us. She is sincere and I look forward to her cards, emails, and small gestures. Thank you Elizabeth for being my friend. You couldn't have sent the booklet at a better time. There are so many people who deserve a Thank You! I only hope that one day I can pay it forward for everything we've received so far.

LIVs LUVs

2009-11-18T21:23:00.002-06:00

I'm so thankful for Livia's imagination. She plays so well. I love to hear her reading, babbling with her dolls, and calling me to color with her. She has the BEST bedroom. Jake and George built a beautiful window seat/dresser/desk/shelf unit on one of her wall's. She has a really cool doll house that her grammy Karin gave her last year for Christmas. She loves getting in her closet and just pulling anything out that she can. I can't believe how much she can reach! Lately she has been pulling her Tinker Bell chair into the kitchen when I'm doing dishes or making dinner. She will pull the chair right next to me, climb up, and start helping me do whatever task I'm trying to complete. She especially loves helping me with the dishes. I think the soapy water has something to do with it. Staying with the "chore" theme, Livia likes to help me with the laundry. I will put her on the washer on her knees and let her dump the soap in. Then I'll let her fill the cap up with water and dump it over and over again. I even let her do the fabric softener. (Don't freak out mom............she CAN'T reach it on her own :)) Jake and I have been working with her to feed the dogs. She knows where the dog food is and we help her scoop it out and dump it in the bowls. She even helps us remember to feed the dogs if we are busy doing other things. I swear she knows when 6pm rolls around. She likes to get the swiffer out. She will push it around the floor. I SWEAR I don't make her do these things. She likes to do what mommy does! Livia LOVES horses, she really loves all animals. Livia spends most of the day in dress up clothes. There has been days that she wears a princess dress to the gym. She loves to watch dancing with the stars. She wears a dress and dances along with the show. She gets so excited. Its really cute. She plays head shoulders knees and toes, row row row your boats, and ring around the rosy. She loves You Tube. We have to limit the amount of time she watches. It all started with Beyonce's Single Ladies video (thanks auntie AuAu). Now it's Elmo, The Wiggles, babies laughing, and Charlie bit my finger video. I want to bottle all these moments up and keep them forever. I want to always hear her yell "MOM" when she wakes up in the morning. I always want to hear that laugh. When she smiles her eyes smile too! Livia has such a tender heart. She has wiped my tears away and held my face when I've cried. I don't like to cry in front of her because she is so aware of it. When she looks in my eyes and says "mama cry," I have to stop. She is an angel and I THANK GOD everyday for her and Finley.

Finley is growing and changing so fast. I can't believe she is 6mos old. I don't remember my little baby. She is eating solids now, sitting up almost on her own, and cutting teeth. She LOVES Livia. Finley has only belly laughed a few times, and those times have all been when she is watching Liv. I think Finley is going to have hazel eyes. Both she and her sister have the prettiest eye lashes. Finley is a special girl. I feel a special connection with her.

Do unto others

2009-11-15T21:48:00.002-06:00

The family and I were in Central IL for yet another weekend. Jake was inducted into the sports hall of fame at Heritage HS. It was a lovely evening to meet the players and see old friends. I'm so proud of my hubby. It's always so nice to hear everything he has accomplished.

For some reason or another, this weekend was very emotional for me. I was brought to tears on many occasions. I find it amazing how some days I can let things roll off my shoulder or not dwell too much on my "haunting thoughts," and other days things seem to push the dagger in just a little farther.

We went to a harvest lunch at church today. I cried all the way there. I must have had an inclination of the emotions to come. We have so much support and concern from so many people. It really is a comfort. I appreciate the things people have to say to me. I'm glad they are taking the time to say things to me even if I am a weepy mess. I'm able to reflect later on these people and the things they have to say to me. I know its hard to know what to say, I don't think I'd know what to say to me. I know I had mentioned in one of my previous posts about regret and not saying important things to people in hard times. I have to tell you a particular case of this that happened to me today. Let me start with a little background info. When I was in HS. a girl in my class named Tara was in a very bad car accident. She was on her way home from play practice, and I was on my way home from softball. I was the first to come upon her rolled van. Tara had been reaching for her cell phone that was in the passenger side of her vehicle and took the van to the right side of the road, into a ditch that caused the van to roll and came back onto the road and was laying on the drivers side. I immediately got my cell phone out and called 911. I ran to her and was able to see her and talk to her. I asked her what her parents phone number was and called them. Mind you we were in the middle of no where Broadlands, IL so it seemed like an eternity for anyone to get there. Another car did stop, but I don't remember much about them. I turned my focus on Tara. I was able to crawl into the van to get close to her and hold her hand. I remember talking to her about prom. I don't remember Tara crying a lot. She was really strong. She kept telling me that her neck and back hurt and that she was sleepy. I knew to just keep talking to her and calm her. I rubbed her forehead and thought of the most random stuff I could to keep her occupied. Once the ambulance got there I had to step away. I can remember wanting to stay with her and just hold onto her hand. More cars had shown up than I realized. People were standing in the corn fields watching from a distance. My dad came. At some point I did call my parents and tell them what was going on, but I don't remember making that call. We stayed until they got Tara out and helicoptered her away. I remember making eye contact with her when she was on the stretcher. I yelled to her that she was going to be ok. I went to visit Tara a few times in the hospital. I remember the first time I went to see her. She couldn't talk. She would blink once for yes and twice for no. She smiled a lot. Tara is a quadriplegic. I can't tell you the last time I've seen her. I do think of her often. I see her grandparents at church. Today, her grandma came up to me while I was feeding Livia. She talked to Livia, asked how we were doing, told me that she kept us in their prayers. I then asked her about her family and specifically about Tara. She told me that Tara got to go to a concert recently and was so thankful she was getting to go to Springfield for something fun and not for surgery. This touched my heart and I was starting to cry. I told her that I think of Tara often. Louise put her hand on my shoulder and said "you know, I think you were the one who saved Tara's life." I lost it. Louise walked away and that was the end of our conversation. I didn't do anything but be a comfort to someone in need. Tara was in a situation that no one ever expects to be in. She didn't need to be alone. If it were me in that van I would hope someone would stay by my side. I only did what I would have wanted. Nothing more. We all need someone to stand with us. I thank you Louise for saying that to me.

God's Grace

2009-11-12T22:21:00.002-06:00

I see God's Grace in the faces of my children.

Being a parent is the best thing that has ever happened to me. It's also the hardest thing I've ever experienced.

I feel like I can say I'm proud of the person I am today. I've made decisions in my life that I wish I could change, but I believe those choices have helped mold me into who I am.

I need to surround myself with positive people. I'm a positive person and negativity is my kryptonite.

I've never felt closer to God in my life than I do now. I can't imagine going through this life without Him and His love. I'm able to lift it all up to Him.

My views and thoughts on so many issues have changed. I want to do so much in my life. I want to help people, I want to feed children, I want to make sick children smile.

There is good in this world. So many people are so generous. I want to be like that. I know one day I will be able to pay it forward.

I know what I don't want to be like.

Don't put off for tomorrow what can be done today.................I really like this saying. I really despise procrastination.

Keep an eye out for more to come! Thanks for reading.

New Friends

2009-11-08T13:46:00.003-06:00

This weekend Jake and I had the privilege of meeting the Boyce family "in the flesh." We had them to our house for dinner. What an amazing evening. Jayden and Livia played so well together. It was so much fun listening to them laugh as they ran up and down our hallway. Both of them have a contagious smile. Jake and Justin are both big kids and got in on the action! Brooklyn is a sweet, petite little baby. I loved the little bow in her hair. I felt an instant bond and connection with Stefanie. She is a beautiful and inspirational woman. Both she and Justin have an awesome Faith. Our conversations were so easy. It was really nice to talk with someone who absolutely gets it. I know we will have a friendship that lasts a life time. Not that it makes any of this any easier, but it helps to have another family who is close in location, close in age, and has kids about the same age.............oh yeah, and has to live this MPS life. Thank you God for letting the Boyce and Hubert "paths" cross. I'm so grateful to You for these wonderful people. Thank you for our beautiful children. They are teaching us how to LIV a purposeful and love filled life. A life that isn't just going to pass us by. We are LIVing life with our eyes WIDE open.

We've made the decision to go to Disney in December to the MPS conference. Some of our family members are graciously helping us financially with the trip. This will be a great opportunity for us to meet other families and to learn more about this disease. I am excited about the trip but I'm nervous because I know we will see other children who are farther along in their journey. This will be hard to see. I know God will be by my side and help me through this. On the other hand, I am excited to meet these children and learn about them. We found out that the Boyce family will be on the same flight, and we are going to the parks on the same days. What a coincidence!

I'll post pictures from the weekend hopefully tomorrow. I made it upstairs without my memory stick. Not to mention Livia is in bed with us right now not wanting to sleep. She keeps pointing at the TV saying "toons" or "TV." Hopefully we will get some sleep now.

Verge of Crazy

2009-11-06T21:16:00.005-06:00

I slept on Finley's bedroom floor last night. She started getting a runny nose and wasn't sleeping well. I refused to bring her to bed with me when she was only in her own for 2 hours. The only way I got her to sleep was on her belly. I know...........a big no no. So, I took the papasan cushion in her room and like a bundle of nerves I laid by her crib listening to her breath. She survived. Well, now Jake is on the couch with her letting her sleep on his chest. What a guy. I really should be sleeping.

Today was definitely a test of my patience. I hate to say this, but I kinda understand why some women (mom's) snap. Don't get me wrong, I've never once thought of hurting my children but I have thought about giving them to anyone who will take them...........but only for a few hours. I would want them back! It's hard not being around family. I've had days where I've desperately wanted to call my mom, sister, gma, and just say I've had a bad day, can you please come over. I wish I had that. There's been days when I just need a shoulder to cry on or someone to listen to me. Days when I just need a stinkin' hug. We thought about moving home after we got Liv's diagnosis. Right away we scrambled to think of jobs back home for Jake to apply for. I even thought I could go back to work part-time at the surgi-center and Cindy could watch the girls. We decided not to make any BIG decisions so spontaneously. There might be an opportunity for Jake to get an elementary principal position in the district he is currently in. This would be a dream come true for him............and me. Hopefully we will know something soon!

Anyway, back to my day. I remind myself constantly that Finley won't be so needy forever. It's hard for me not to be able to play with Livia much during the day. Thank Heaven's she does play so well by herself. She's got a great imagination. Her favorite thing to do right now is play dress-up. She also likes pretending she is a puppy. Her all time favorite thing is reading and looking at books. I love that she can "read" some of her favorites. I put read in quotations because I know what she is saying and she even does some of the playful things Jake and I do while reading to her. I can be so stressed out, leave for an hour or two (while Jake has the girls of course), come home to a smiley baby that is so excited to see me and a little brown eyed girl who shouts MOM when I walk in the door like she hasn't seen me for years. It makes all my stress go out the door. It also helps to have a husband that is concerned for me and makes sure my needs are met. I love you Jake, you are my guardian angel!

We are meeting the Boyce family tomorrow. I am so excited to have them over to our house. It will be nice to meet them in the flesh!! Stefanie and I have talked once on the phone, and email back and forth. I follow her blog as well. They have a 3yr old, Jayden and a baby named Brooklyn. Both of their children have been diagnosed with Sanfilippo. Stefanie is from Rockford, so they visit her parents often. Stefanie has an amazing Faith, and just from what I've read from her blog, she is a strong woman. We will be going through a tough journey in our lives, but maybe having someone to relate to and be able to understand exactly the thoughts and feelings we are having will help.

I better turn in. Big day tomorrow. Run 8miles, clean, make brownies, play, and hopefully catch a nap.

This is the day that the Lord has made; let us rejoice and be glad in it! (Psalm 118:24)

Just Fine

2009-11-04T22:15:00.002-06:00

I added a new song to my playlist on my blog by Mary J. B. called Just Fine. This song has been on my ipod forever! I was rearranging music on my playlist that I run to. I added this song because it is so up beat and I love the words. This song is my theme song. While I was running today this song came on and I nearly lost it. The tears started to flow and I almost lost my focus. I had to remind myself that I am............Just Fine. I have to remind myself of this often. My thoughts can be really harsh. Will there ever be a day that I don't feel this dagger in my heart and have to fight with the thoughts that come to mind? OK, OK, enough already...........find that focus................my girls...............hearing their laughter.............having a good day with them............LIVing in the moment.

Clarification

2009-11-02T15:29:00.003-06:00

I have to correct something that I posted in my last entry. When I was talking about my mom talking behind my back, I was referring to a situation not that I felt she was talking behind my back. She really was standing behind me talking to someone. I do not want to discourage ANYONE, especially my family from explaining our situation to others. This is not what I meant. I was trying to explain that it is hard for me to know if people are talking about our situation, or when people look at us and start talking if they are chatting about Livia. This is something that I'm going to have to work on myself, and get over. I'm so sorry for hurting any one's feelings. This was not my intention AT ALL! Sometimes my thoughts drive me crazy. I love you mom, and you are such a strong support to me.

Halloween and more

2009-11-01T20:41:00.007-06:00

What a weekend! Jake, Livia, Finley and I traveled to central Il on Friday afternoon. Jake took half the day off, so we were able to leave by 1pm. We celebrated with the Hubert's that evening with a nice dinner at the Possum Trot. Grandma Cindy is retired!!!!! YAY! I know she will really get to enjoy all her free time with projects around the house, knitting, sewing, and visiting all her kiddo's! Both of my girls were so tired during dinner. Livia was good, but little Finley screamed most of the time. Poor things were both in clothes that were too small for them. A lot of my neighbors have given us hand-me-down clothes (which is the greatest thing in the world) Becca (my running and pilates mate) gave me an outfit that her daughter wore for pictures for Finley to wear. The outfit is so adorable I wanted her to wear it at least once. The outfit fit except the pants came up to her knees. I didn't know how bad it was until I got her out of her car seat already at the restaurant. My mom and Jake's mom got the girls dressed and told me that the clothes were too small. I just shrugged it off because we had to get going. Oh well, we survived. Thanks Becca for the cute outfit, at least she wore it once!!!!

Saturday we went into Champaign to take the girls to see Jake's grandma geegee, and my grandma Fish. Livia was dressed as an Illini cheerleader and Finley had a onesie on, from Becca, that said baby's first Halloween. The visits were very nice. Livia was a little scared at the nursing home, but my grandma was so happy to see us. We then went and had lunch with my dad and Carol. It was great to see them as well. The girls got really nice trick or treats from them. Saturday afternoon we went trick or treating to my mom's house and autie AuAu was there too! Livia had a costume change and was now in her lion outfit. Finley was now a chick! Allison, Alexa, Patti, and Grammy all came over and then we went to trunk or treating at the community building in Homer. It was very cold and windy, so it didn't last long.

Sunday, today, has been such a long day. The time change is so weird, and hard to get use too. Even though I've been doing it for 28 years! Maybe it's different because I try so hard to stick to a schedule. Anyway, we had the Franzen Thanksgiving/family reunion today. It was nice to see some familiar faces. I had a bit of a hard time at the reunion. It's hard to hear the "whispers" of people talking about our situation. I don't mean this in a bad way by any means. It's just how I'm describing it. I know a lot of people know what's going on with our family, but I don't know who knows and who doesn't. It's hard for me to hear my mom or anyone talking about Livia behind my back when I'm sitting just inches away. Again, this isn't intended bad and I'm not mad at you mom. I just wish people would talk to me or feel like they can approach me about our situation. I'm sure people don't know what to say..........what do you say. I try to put myself in other people's shoes and think if roles were reversed. Before all of this happened to us I probably wouldn't just walk up to someone and put my hand on their shoulder and talk to them about their daughter's terminal illness. But now.........you better believe I would do just that. It's so much worse to hear people talking about you and not too you. I know this doesn't always have to be what people want to talk about. I understand that and I don't always want to have to talk about it. There are a lot of good things to talk about too. I want to be approachable and I don't want people to be afraid to talk to me. One of the hardest things to deal with, along with all of this, is feeling like you've lost friends. There has been a tremendous amount of people that have come forward to support us, listen to us, cry with us, and just love us. People that maybe we were connected with in the past and people that have always been in our life. There are people who I thought would be there who aren't. This is so heart breaking to me. I try not to let it bother me, but I have shed tears because of it. I think I'm so sad about it because its people who I really love. Friends who have been friends for many years. There is a section in the book "Holding onto Hope" that spoke to me when it comes to friends. It is the Comforters section. One paragraph that has really helped me says "If you and I want to be free of the bitterness that estranges us from others and eats away at our own struggle to find joy again, we are going to have to forgive and pray for the friends who have let us down. They might not deserve it. In fact, they probably don't. But then, we don't forgive people because they deserve it; we forgive them because we've been forgiven so much by God and because we want to keep in close relationship with God. And the benefit is that through forgiving, we're set free. When we are able to accept what others have to offer in out time of sorrow, as well as their limitations, we are no longer bound by our expectations or embittered by disapointment in others." I do forgive..................and I do love you! I ask for your forgiveness also. I know I can always make improvements to myself to be a better friend.

All in all it was a good weekend. I love my family and friends so much. I'm happy to announce that our shop for a cause fundraiser through Macy's brought in a total of $1,635.00 for MPS research! Thank you to everyone for their generous donations. Thank you to Jake, Karin, Audra, Jim, Grandma Diane, Cindy, Heidi, and Jenn for helping sell the tickets. You all have a special place in my heart. I love you all so much.

2009-10-27T22:13:00.003-05:00

My emotions are overwhelming this evening. Jake and I had a true heart to heart after watching The Biggest Loser. That Abby, what an inspiration she is. Its funny the things that can trigger our emotions. Jake and my relationship is stronger than it ever has been. I have the best partner to go through this journey with.

I was telling Jake tonight that when we got Livia's diagnosis it seemed like everyone would always say the same thing to me. They told me to live for today, don't focus on the future. This made me angry to hear. I couldn't understand why people were telling me this. How could I not think about our future. However, since the dust has somewhat settled since her diagnosis I can say that this wasn't terrible advice. This isn't easy to say or admit, but I feel like we've been given a gift. I LIV each day with my eyes wide open. I take in every laugh, every hug, every nap/cuddle, every everything! I feel like the way in which we were living before this diagnosis was in a way taken for granted. My friend Stefanie put it in a good way. She said before this we were living in black and white and now our lives are in color. I love that. We don't know exactly what tomorrow is going to bring. I cherish my days with my whole heart. I am scared of our future, but I know it's going to all work out. Right now my focus is on being the best mom, wife, sister, daughter, and friend I can be. I can honestly say that I am happy. I have 2 beautiful girls who are so happy and full of life. I have the BEST husband that is my guardian angel. I have a wonderful support system of family and friends. I truly feel blessed. I also have to say that I have a renewed faith in God since all of this. I did have my moment when I was angry and confused with Him. This is such a comfort to me that I can talk to God now and read His word and feel connected with our Savior again. I've always been a Christian and believed in God. I had a bad experience at church when I was younger and I think that turned me away for many years. I didn't understand a lot, and didn't know the right questions to ask. When Jake came into my life, he answered so many things for me and explained a lot. I'm still in awe of his knowledge and how strong his faith is. I finished reading the book "Holding onto Hope." If you have a chance to read this, please do. Especially if you have suffered the loss of someone, are going through a difficult time, or just need some insight on how to cope with an emotion. I feel like I'm all over the place with this post, but I'm just letting my heart sing. One more thing before I go.............if you know someone who is going through a hard time.........be there for them. Just tell them you love them and are thinking of them. I regret not doing this more in my past. It breaks my heart to think that someone might have thought that I didn't think about them or was praying for them. People can't read your minds, or your hearts. Be honest but most of all let them know you are there. It's so awful to feel like you are alone.

But I am trusting you, O Lord, saying, "You are my God!" My future is in your hands. (Psalm 31:14-15)

Our story

2009-10-26T22:04:00.003-05:00

It's hard to know where to start with something like this. It's not an easy thing to just strike up a "blog" and say our 2 1/2 year old daughter has been diagnosed with a terminal illness. Well, I said it and now it's out there. I can now begin our story and tell you how we've come to this place in our life.

Jake and I have been married for almost 5 years now. We have 2 beautiful girls named Livia Grace and Finley Faith. They are our world! As I said before, Livia is 2 1/2 and Finley is 5mos. old.

I'll never forget the first time I saw Livia. She was delivered by c-section due to a breach position. As the Dr. dropped the sheet to show me Liv, I looked up and there she was. Dark hair, pursed red lips, hands and feet curled to her body. Is was if time stood still while I was looking at her. I know this moment only lasted a second or two, but I remember it so vividly. Life was so great. We had a perfect 6Ibs 4oz perfect little girl. Livia was a very easy baby. However, she never wanted to be put down to sleep. When I had to go back to work, I was so fortunate to have my sister and grandma watch Liv. They both had a difficult time putting her down. I always blamed it on the fact that she was breastfed and she always feel asleep in my arms. Honestly, I didn't mind. I tell people now that I think I held her for the first 18mos. of her life. (That's how long I breastfed her). As Livia got older, things seemed to be going just fine. She ate anything, and still does. She was a happy baby. She hit her milestones when she was suppose to when it came to rolling over, sitting, crawling, babbling, etc. The first milestone she missed was walking. She didn't successfully walk on her own until she was 18mos. old. No biggy........she did it. We then noticed that she was having these "episodes," as we refer to them. They usually occur when she is sitting at her Tinker Bell table coloring. She will sit on the very edge of her chair until she is almost falling off, cock her head to the side, hold her breath and let it out with a sigh, and pulse her legs. We thought she was having seizures. We took her to see a pediatric neurologist who suggested doing an MRI. That came back and showed nothing. He then suggested a 24 hr EEG that would be performed in our home. Again......nothing. In the mean time we had started her with speech therapy. She wasn't really talking like other kids her age. This therapy went on for awhile, but we weren't really seeing any results and the therapist wasn't for speech she was a developmental therapist. We decided to take a break from the therapy and just go on with our daily lives. At one of her routine check-ups it was suggested that we have her seen by an ENT Dr. and have her hearing checked. That made sense to us. If she isn't hearing correctly then how can she form words correctly. This seemed like it was going to be an answer to all our whys so far. The ENT Dr. determined that she would benefit from her adenoids being removed and tubes put in her ears. Livia has always been a "loud" breather while she sleeps along with a constant runny nose from the day she was born. During this surgery they were going to perform an ABR. This is the most accurate way to test the hearing center in the brain stem. Unfortunately Livia came out of anesthesia too quickly to get an accurate reading. After her surgery, the Dr. came out to talk with us. He mentioned that he noticed some things with Livia that might benefit us talking with a geneticist. I didn't really think much about it at that time. We had started speech therapy again, but with someone new. After a few weeks with her she mentioned to me that they had a child in their facility with similar characteristics as Livia and that we may want to consider seeing a geneticist. WAIT...... didn't Dr. Zaya say that to us???? OK, I was starting to think maybe we should see someone. I decided to make a call to Dr. Hoganson's office who is a geneticist in Rockford. We met with him and Christie Munn (genetic counselor) I went through our story with them. He did a once over on Livia and wanted to do a urine test. We got the results of the test while we were home for a 2 week visit. They told us she had tested positive for MPS. Of course the first thing I did was run to the Internet and read about it. All I could see was that it was terminal, no cure or treatment. I screamed. Jake, Liv, Finley, and I drove back to Rockford that day so that we could see Dr. Hoganson the next day. We met with them again and they explained that they would have to do a blood test to determine what type of MPS it was. They were pretty sure it was Sanfilippo, but couldn't be sure without the blood test. We did the blood test, and drove back to central Il. This time is a little hazy for me, so I'll just move on. It was a waiting game. During this time we did speak to the MPS society. They suggested that we not read anything until we knew exactly what we were dealing with. This was somewhat peaceful for us. Then the time came to get the results. Sure enough it was Sanfilippo Syndrome. Oh, did I mention we had an 8 week old baby at this time. I didn't know where to go or what to do. I'd never felt so out of control in my entire life. Every time I looked at my beautiful little girl, all I could do was think that I was going to have to bury my baby. How are we suppose to go on? We of course had Finley tested right away. She would have a 25% chance that she would have this disease. The waiting game was on again. I honestly had a gut feeling that her test would come back negative. I just knew that she was born for a big reason. I felt like she was going to help us get through this. Not that I don't think Livia will help us get through this as well, but I knew that Finley was a miracle. If we would have found this out about Livia just a few months earlier, then Finley wouldn't be here. Needless to say, her test did come back that she did not have the same genetic mutation that Livia had. She is a carrier of this gene.

This is only the beginning of our story. This blog will be our journal. We want to share our journey with you. Just remember to LIV life, and cherish everyday. We love our life, and wouldn't trade it for anything. God bless.