To Run With Endurance-Celebrating National Fragile X Syndrome Awareness Day 2013

"Therefore, since we are surrounded by such a huge crowd of witnesses to the life of faith, let us strip off every weight that slows us down, especially the sin that so easily trips us up. And let us run with endurance the race God has set before us. 2 We do this by keeping our eyes on Jesus, the champion who initiates and perfects our faith.[a] Because of the joy[b] awaiting him, he endured the cross, disregarding its shame. Now he is seated in the place of honor beside God’s throne." - Hebrews 12:1-2 

It's that time of year again...when those of us families affected by Fragile X Syndrome, along with our friends and professionals in the medical field who are passionate about helping these special kids mark a special date on the calendar.  On July 22 each year we strive to bring awareness about this condition to the world.  We share facts and figures, symptoms and stories, longing to shine a spotlight on these sweet kids so that our own "crowd of witnesses" will continue to grow in support. 

This year the National Fragile X Foundation www.nfxf.org put out a challenge to participate in a fundraiser, a "Let 'Em Know Virtual 5K Event".  When I heard about this, it was a no brainer for us because Landen had just begun riding a three wheeled bike and I had begun struggling running behind him, lol.  So we began officially logging time.  Then my mom started joining us and together we have logged over 90 miles!  I set a goal for $500..so far we have $300...I am thankful beyond words for each thoughtful dollar donated for #teamwilson!!!  If you would still like to give before the end of day July 22, click this link  http://www.crowdrise.com/teamwilson/fundraiser/jessicawilson3  to donate =)

To give you some idea of what it's like to exercise with Landen, he is just about the best trainer you can find.

#1. He is very commanding and will repeat what he wants you to do over and over (so you'll comply just to make him stop, ha!) 

#2. He's very fast on the bike and if you don't want to lose him you have no choice but to keep up! 

When we first go outside he tells me "stretch mom!" while he rides in circles on the cul-de-sac waiting for me to finish. Then he takes off on the bike ahead of me, yelling "start running mom!"  Before I know it he is looking behind at me shouting "faster mom, faster!"  Once we get going, he has learned to stop at the intersections (i'm also reminding him through labored breaths from behind)..and he loves to wave at cars going through the stop signs.  (He's so sweet to people it just melts my heart).  It's sort of entertaining to watch peoples' various reactions to him.  Some are cordial and give a sweet smile, a few have rolled their window down and said "we knew him when he was at Metzler"..etc (Landen has a way of becoming infamous lol), and yet others will look at us like we are crazy.  It's funny if mom is with us because her mama bear feelings come out and she gets offended by those who are stoic or ignore Landen when he's waving to them, haha! 

One day Landen was begging me to go all day and finally at 2:30 pm I had to give in.  However, it was 93 degrees outside.   Needless to say, when we came back to the house, I was dripping in sweat and about to lose a lung, and he looked over at me and so enthusiastically said, "whew! that was GREAT!"  ..difference of opinion!  =)  

But of course, I am so grateful for my little trainer.  It has been fun working on a goal together, even if he doesn't understand how it all benefits a Fragile X campaign.  Looking back at Hebrews 12:1-2 I am aware that our "race" is but a small one amid the bigger track we are on in this unique life that God has called us to.  It is a daily, moment by moment choice for me to submit myself to a greater purpose of knowing Christ and making Him known.  Many things compete for my attention, affections, and mind.  There are particular things in my life that God has been challenging me to be released from so that I am not weighted down and therefore limited in my view of the finish line.  What is my finish line?  It may not be a cure for Fragile X in my lifetime, it may not be a life filled with grandkids and college graduations.  But because of those that have gone before me, blazing the trail of faith and hope, I have landmarks of truth to cling to along the way:

God will never leave or forsake us.  His mysterious love is echoed in my special boy's heart.  God specializes in redeeming lost dreams and turning them into something that can touch others' lives in bigger ways than we could living only for ourselves.    As long as I keep my focus on the Lord, "the champion who initiates and perfects our faith", I can endure.  I love Hebrews 12:12-13 as well...

"So take a new grip with your tired hands and strengthen your weak knees.  Mark out a straight path for your feet so that those who are weak and lame will not fall but become strong." 

weak knees...

 All I have to do to remind myself that I am not alone in this journey is to read the fb posts of other FX moms who communicate in FX forums.  Sometimes they speak of elation over small victories.."my 5 year old went on the potty for the first time today!" or "i am so proud of jason...we went into the grocery store and he made it without any meltdowns!"...other times it is gut wrenching honesty over their grief...."i'm sinking...my sister in law told me she's pregnant.  I want to be happy for her but I am so deeply sad that I can't have any more children..I broke down in the middle of Kroger..is this normal?"  Then the flood of support and encouragement begin to flow as moms hold each other up.  It is one place we can go where we know without a doubt we will be understood.  Because, the truth about having a child with this condition is, though we may go through phases of success, less meltdowns, find medications that help..it is still hard.  Just when I think I'm coasting along, maybe even thriving, I can be hit with a sadness that creeps up on me.  This happened recently when I was attending an outdoor concert at Market Street with my dear friend Kathie.  As the evening drew on, more and more families gathered on the lawn.  Kids of all ages were running around, playing, dancing.  I enjoy watching little kids.  I am marveled by their little minds that work like sponges, taking in all that is around them and responding to it appropriately.  After a while Kathie looked over at me and said, "are you ok?"  I said, "yes..why?"  "You just look like you are in very deep thought."  It took me a while to realize that a sense of sorrow was enveloping me.  Often, by the time I can name what I'm feeling, my heart is literally aching.  I am grateful beyond words for my friend Kathie who is never impatient or aloof with me in these times.  She lifts me up and always prays for God's truth to rescue my heart. 

So..this is the life of Fragile X Syndrome..   sorrow.   sweetness.   despair.  elation.   regression.   growth.   fear.   hope.  loneliness.   community.        

Landen riding with his Nana's dog "Jonnie Cash" in the back =)

http://www.crowdrise.com/teamwilson/fundraiser/jessicawilson3

Great Expectations

Wow. I'm really not good at updating our life on here! Maybe because I'm busy with all the details that come with our very unique life!

Here we are at another summer. Landen's first year at Hildebrandt turned out to be a really good experience. His teachers seemed to have gained a strong understanding of his personality and needs. This has helped foster a sense of freedom for him, while allowing him to still follow the very needed routine that his anxiety requires. One thing that helped him transition well each day between home and school was to carry around some laminated "days of the week" cards, so each day he would grab the current day and the next day. It seemed to be his way of understanding where he was in each given week, and anticipate how close he was at any given time to the coming weekend. Now that we are home for the summer, he still uses them.

He also loves to keep up with the calendar on the computer. Right now he is highly anticipating his sister Bethany's 17th birthday on Saturday. Birthday parties are his favorite occassion, whether they are his or someone elses! If there is cake, candles, and singing Happy Birthday involved, he is all over it! I posted this video on FB from his own birthday party in January...it's pretty funny...he sang the birthday song along with everyone and wanted us to sing it over and over. He gets the biggest smile on his face, then bows over and over, saying "thank you, thank you"! Those are the moments that bring us so much joy. Here is the video..(sorry it's oriented to the side...can't figure out how to fix it! lol)



The most beautiful part of that video though, is the presence of some of the friends and family that share life with us and support us so much. We could not do life without them!

Earlier this year we had a really neat experience. Mark was driving both kids to Walmart, and the radio was on. I was off with some friends eating dinner. Mark said the radio was playing "I Can Only Imagine", a song about longing for heaven and anticipating the joy of being in the presence of the Lord for eternity. He said Landen started singing along, and seemed to know most of the words! He called me on the phone immediately to tell me, holding back tears. I don't even own that cd, i almost always have my ipod playing in the car, so we don't know how he knows it so well. I even asked around to others that have babysat him and no one had exposed him to it. Since then, we have played the song on the computer and listened to him sing along a few times. It completely blows us away! Bethany said to me, " I wonder, since Landen can't understand a lot of things, if this is a way that God is revealing Himself to him." I think she is absolutely right.

We learn so much from this little guy. If only he knew how much. He is our constant reminder that we live in a broken, fallen world, that we are not in control, but that truly living is celebrating the smallest victories. I am finding that there is a surprising freedom in that. The fact that he is so easily amused and entertained by the smallest things teaches us to live in the moment. Every night he gazes at the moon. He makes me stop what I'm doing and look up. Every day when I come home from having gone somewhere, (even if it's only for a few minutes), he makes a really big deal and runs to me, hugging me and saying "Mommy (or Daddy), you're home! You came back! (as if we wouldn't =) We are inspired to be constantly refined in our sense of gratitude, which I know also reflects how God wants us to perceive the journey. I think of 2 Corinthians 6:10 "Our hearts ache, but we always have joy. We are poor, but we give spiritual riches to others. We own nothing, and yet we have everything."

I feel God asking me to live with more expectancy. More faith that He can accomplish more with Landen's life than I anticipate. At the end of the school year they told me that Landen is going to have to go to yet another new school next year. Budget cuts have removed 3 separate middle school's special ed programs, so they will all be joined into one. Of course we were not happy about that news, because change for him is so daunting. But I was comforted greatly by the sweet words of the teachers and therapists that worked with him this past year. They all spoke about how much happiness he brought into their lives in the time they got to spend with him. And I can't even begin to say enough good about his bus drivers...they were ANGELS! They loved on Landen so unconditionally. Every single day they expressed to me their affection for him. That was such a blessing to my heart. I am praying he gets the same ones next year! He's gonna need all the familiarity he can get as he transitions to the new school.

I was given an encouraging word from a very wise woman at a worship leaders' conference I attended in Atlanta last year. This dear lady Anne prayed with me and told me that she felt God was walking Mark and I on a journey that resembles the act of Communion...a life that must first live with thanksgiving, then is broken, blessed, and multiplied, just as Christ was broken physically and His Last Supper foretold so through the breaking of the bread and the pouring out of the wine. After I left Atlanta, I couldn't stop thinking about those words, "broken, blessed, multiplied".... a holy rhythym, a pattern, a heartbeat to live by. I must be willing to be broken as Christ was in order to be blessed with His character, His hope, His effectiveness. I can only do that in a posture of daily surrender.

Then something else amazing happened. This year at the same Atlanta retreat, a sweet friend came up to me and told me I must read this new book that she just could not put down. I have been reading it and have discovered it to be confirming Anne's words. It is a fantastic book called "One Thousand Gifts" by Ann Voskamp. It is beautifully written, raw, honest, Truth-seeking. The author crafts a rich lesson as to how the process and symbolism of Communion demonstrates our need for thankfulness in life..in all things: the broken and the blessed, the empty and the filled.

I read and receive those words with hope. I will live with great expectation. I will give thanks for the blessings only the Lord can give.