Putting aside politics altogether, I was moved by Gov. Dannel Malloy’s speech at the Democratic Convention this past week. His brief, but powerful recitation of his early years as a child with learning disabilities, who was labeled as the term was used at that time as “mentally retarded,” lodged a lump in my throat and reduced me to a puddle of tears. His mother’s dedication and persistence to find ways to help him learn and his own resilient spirit to work hard and strive to master skills that came so easily to his peers is more than inspiring to me; it’s a lifeline of hope and a reminder that we are not alone in this unpredictable life.
My husband and I have three beautiful sons. Our middle child was born on a brutally hot summer day in 2011 and when the nurse proudly handed him to me I had a sense something wasn’t right. But as the weeks and months marched on and he smiled, nursed, and filled diapers at a healthy rate, my fears eased.
At about 5.5 months, however, my world came crashing in around me when I realized he was seizing. The smiles subsided and he appeared just to stare off as his body jerked forward in a seemingly painful movement. Frantic, my husband and I scoured the Web while awaiting a doctor’s appointment. And then I saw the words and watched the video – infantile spasms or “IS.”
I read on – “intellectual prognosis for children with IS is generally poor because many babies with IS have neurological impairment prior to the onset of spasms.”
I cried myself asleep that night holding his baby blanket, feeling the weight of a “death,” a pain so searing it felt like I couldn’t catch my breath. It took months to find the right drug and amount to stop my son’s seizures – which often totaled as many as a 100 an episode at a pace of three episodes a day. But he was lucky because for some children the seizures never stop and growth and development are severely, if not completely, stunted.
Time marched on as it insists, and our son did begin to develop, at a much slower rate than the typical child, but it did happen. I remember watching my husband trying to sit our son up on his first birthday and help him fit shapes into a bucket. He was greatly overweight as the drugs made him ravenous. Shamefully, I admit secretly fearing – he’s never going to be able to do it – “my sweet baby isn’t going to be able to sit up, much less walk or talk.”
But my husband embodied the spirit and commitment of Gov, Malloy’s mother, and by example he helped me to as well. He believed our son could learn, he believed even if he didn’t it was still worth the fight, the shot, the time, the effort. At 5 years old, our lean little boy with a head of gorgeous brown curls does walk, in fact he runs. He does talk, in fact quite a bit, he laughs, he loves, and works incredibly hard to do things that come so easily to his two typical brothers.
We know our sweet boy will be intellectually disabled and always need some level of assistance, but Gov. Malloy’s story reminds us not to allow our fears of what his future may hold to limit him. We may just be surprised at how far he goes and the beautiful life that he can achieve.