Eight months old today, he has had various forms of seizures, up to hundreds per day, since myoclonic jerks sent him to the hospital in March of this year. But the infantile spasms that began later—small crunch-like postures that happen in clusters throughout the day—erased his ability to smile, to hold his head up, and to roll over. He’s now a huge tank of a seven month-old boy. Handsome. Gorgeous rolls of baby fat. Smells divine. But he has a life-threatening and limiting condition that will never go away.
In April, after months of tests, the neurologists agreed that Clyde was environmentally insulted by either a virus (like CMV) or a random ischemic event as a fetus in the second trimester that affected the formation of his brain. In patches, generalized and widespread across both hemispheres, and in every area except for the occipital lobes, neurons failed to migrate to the cortex. They call this polymicrogyria: many small folds. There is a spectrum to this disorder, and Clyde has the most severe type.
We try to ignore the prognosis. Yet, we must write it here, because we are thinking it to ourselves every day: He may never walk, talk, or be able to care for himself independently. There’s a ten percent chance he could die in his sleep, and a greater chance that he will ultimately be taken early by cumulative bouts of aspiration pneumonia. He already shows signs of spastic quadriparesis, global motor delay, severe cognitive impairment and refractory seizures. He can’t use his hands. Just now trying to hold his head up–an ability that disappeared when he was two months old, at that same time his smile disappeared–he simply cannot smile. He appears content. As his parents we’ve learned to recognize this, or so we hope.
Again, ignoring the prognosis: He seems to change every day. Tiny eye movements during a touching moment show he’s smiling inside. A random thrust of his arm seems to mean he’s reaching out. A furrowed brow shows some intent. And that is hope. We are holding his hand through life.
We’ve been mostly quiet because we needed time to understand what was actually happening to Clyde, grieve for the passing of Damon’s father, and deal with job and healthcare loss and delays. To grieve for Clyde. Throughout, our friends and family have been our anchor and our levity. We are thankful.