Tuesday, December 20, 2011

Christmas Cookies and The Wiggles



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.

Tuesday, November 29, 2011

Above and Beyond

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."

Thursday, November 10, 2011

Minnesota and a Roller-Coaster

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.

Wednesday, November 9, 2011

Unexcused absence

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.

Friday, October 21, 2011

Natural History Study, Round 2

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.

Tuesday, October 4, 2011

Pampered Chef

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

Wednesday, September 28, 2011

Stone Bridge

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!

Tuesday, September 13, 2011

Making up?

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!

Thursday, September 1, 2011

A punch in the gut


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

Tuesday, August 30, 2011

Guest Blogger

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!

Monday, August 29, 2011

A stroll with my girls.

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.

Wednesday, August 3, 2011

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


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!

Thursday, July 21, 2011

Reminder

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!

Tuesday, July 19, 2011

Volleyball Benefit

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.

Saturday, July 9, 2011

7/8/09

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.

Tuesday, July 5, 2011

Embrace

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.

Thursday, June 30, 2011

Balance?


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!'

Tuesday, June 28, 2011

A good report

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.

Wednesday, June 8, 2011

First annual Liv Life Golf Outing

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.

Friday, June 3, 2011

Worse off than me?

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!

Thursday, May 19, 2011

A Nudge


{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!

Tuesday, May 17, 2011

May 15th, 2011

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!

Monday, May 9, 2011

Just when I needed it the most!

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!

Thursday, May 5, 2011

Small accomplishments

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

Monday, May 2, 2011

History and Leaving a Legacy

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!

Monday, April 18, 2011

Give Love


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!

Friday, April 8, 2011

Natural History Study, Round 1

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!