When I was growing up in a family of eight—two parents and six kids—none of us knew a genetic disorder lurked in the genes of half of us. We were, after all, healthy, happy, and as “normal” as can be.
When my older siblings got married and started having kids, we were all sufficiently unimpressed by the continuing cycle. After a dozen nieces and nephews and one healthy daughter of my own, we all expected the next generation to simply carry on.
Then my second child was born. We did the typical celebrating, dreamed the typical dreams. He’d have a long and full life ahead to explore and conquer his chosen path, just like all of his cousins and his older sister were doing before him.
But pretty quickly in his journey, even before he was a year old, my husband and I started noticing things that didn’t seem quite as typical as we expected. Lack of eye contact; not reaching for toys; not sitting up or rolling over or even crawling; tightly clenched fists; fits in stores with bright lights; unable to pick up Cheerios; only able to eat bite-sized food. The list went on, but we still had hope whatever might be “different” wasn’t serious. Not with this long legacy of healthy kids before him.
By the time our son was fourteen months old, we couldn’t ignore the signs any longer. We made an appointment with a pediatric neurologist and before very long received the devastating news that he has Fragile X Syndrome. Of course we’d never heard of it (something that might not be much different today, even though this was over twenty years ago—most people still haven’t heard of Fragile X).
If we’d been able to see into the future, say, twenty years or so, I’m not sure it would have helped. We didn’t know our son would be among the lowest functioning Fragile Xers. Maybe that would have frightened me.
I think there’s a reason God created time. The unknown is scary enough when it’s dark, but sometimes knowing details might be overwhelming.
What I’ve learned is that when time reveals itself naturally, we grow with it. We learn to adjust. We become stronger. We learn by mistakes so we can avoid repeating them. Would we have learned the lessons if we somehow saw into the future? I’m not sure.
Today my son is twenty-one years old. Although he understands simple, one-step directions (put on your shoes; pick up your books; use a fork) he doesn’t speak much. He has words but no sentences. His favorite noise is raspberries, because he can control that. Although he’s potty trained here at home and most of the time at school (a miraculous accomplishment we all celebrated in the last few years) he still wears pullups because of frequent accidents.
On paper, that all looks devastating. Maybe seeing into the future would have been as bad to me then as it reads today. What an accounting of my son doesn’t say, can’t say, is the love we feel for him; the smile that comes with him; his willingness to do what’s expected of him if only he can understand what that is. It also doesn’t take into account the lessons I’ve learned along the way about compassion and patience and the dignity every life possesses. My son was created in God’s image, given to me and my husband because He knew we were the right ones for the task that came with who he is. Our lives have been limited right along with our son’s, no doubt about that. But he’s safe and happy with us, and I’m grateful we’ve been able to provide that kind of home for him.
For more information about Fragile X Syndrome, click here.
My book, The Oak Leaves, was inspired by my experience of this diagnosis.
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