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.

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.

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.

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

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!

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!

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