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The Moment I Saw Past My Son's Diagnosis


It’s the nature of medical text to describe conditions by their deficits. People with Moebius syndrome, like my son, Willem, don’t have certain nerves that trigger the muscles of the face. This, according to the National Institutes of Health (NIH), means they “lack facial expressions; they cannot smile, frown, or raise their eyebrows.” Many cases also involve “bone abnormalities in the hands and feet, weak muscle tone (hypotonia), and hearing loss.” In other words, they are missing fingers or toes or larger portions of limbs.

It dawned on me as I sat in a session on facial nerve regeneration and transplantation at this year’s Moebius Syndrome Conference that this focus on the negative – “the missing pieces” – of my child has clouded the way I’ve seen him since he was born.

man with his son inside their home Willem is 9 years old now, and when I look back at the pictures of his infancy I see two scared parents holding an incredibly cute baby. We studied his little body, along with a team of medical professionals, to determine the full limitations of his nervous system. And then we advanced to looking for the latest therapies and surgeries to rectify his deficiencies.

Don’t get me wrong, I’m eternally thankful to the dedicated medical professionals who helped us through those very difficult first years. But of all the interventions and therapies we’ve tried, the greatest influence on Willem’s progression was his own will to do better. He can’t close his lips and yet he taught himself to suck through a straw with his tongue. He never learned to crawl, but he got around by rolling and eventually scooting on his butt all over the house.

It’s a great relief to say I don’t need to try anymore to make Willem whole, because he’s not actually missing anything. Just like I don’t have a third arm and my wife doesn’t have eyes in back of her head (despite what my children think).

Not all faces show emotion. Not all hands have five fingers. Not all ears can hear. Not all eyes can see. Not all minds are easily stilled. Not all legs can run. And no one’s heart will beat forever.

One day Willem may decide he wants to blink better or have a wider smile, and I’ll support him however he wants to pursue that. But in my eyes he’s perfect right now. He is complete.

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