Me and Fragile X

Anyone who knows me or has read The Oak Leaves (Tyndale, 2007) realizes that Fragile X is a huge part of my life. My son was diagnosed with this genetic form of mental retardation when he was around a year and a half. Because he was the first in our family to exhibit any kind of limitations, it came as a shock to learn not only was I a carrier but so were my two sisters.

Upon the diagnosis, I had to accept one of my children would live a life of constant limitations. I cannot briefly describe what it’s like to learn the child we thought we had turned out to be someone who would always need us to take care of him. Anyone who has a child with a disability knows what it’s like to face the fact that your child is “different,” that most hopes and dreams you hold for them probably won’t come true.

Which leads me to a brief note on expectations.

I expected “normal” children. I had to readjust those expectations when my son was diagnosed. His life wasn’t going to be Kindergarten through college then out of the nest; it’s Special Ed and adult housing and many kinds of therapy in between.

Then, I read the Fragile X literature and expected a “typical” Fragile X’er. But as my son got older and failed to meet even the “typical” milestones set by most kids with this disorder who are higher functioning, I was forced again to readjust.

I also had certain expectations of friends and family: A community feeling of everyone rallying-round and helping us face the daily challenges, day after day, year after year. But mental retardation means unexpected, a-typical behavior and most people are just too uncomfortable around those with such a disorder. So, I changed my expectations again.

Maybe this “readjustment of expectations” was the biggest lesson learned from having Fragile X enter my life. But my expectations were just that—mine. They weren’t part of God’s plans.

If I had a choice I wouldn’t have chosen to carry a Fragile X gene. Yet it’s there and I’m learning to surrender those old expectations. It gets easier the more times I do it.

I’ve also learned something every bit as important, and that’s how deep love can be, and as selfless as it needs to be, as endless. Almost daily it reminds me of how much God must love me, despite all of my faults and shortcomings and how silly I was to want to cling to all those expectations to begin with. No one knows their own future, it’s always best to leave that in God’s hands and trust Him when He leads in a new direction.

So if God takes you on a path you never expected to go, let go and look up. He’s there in the midst of it all—with blessings you never expected, either.