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