The first time I laid eyes on my son Calvin he was twenty-one hours old. He was sleeping in his isolette in the Neonatal Intensive Care Unit (NICU). His cherub face glowed round and flat like the moon atop his perfect little alabaster body. He had been born six weeks prematurely. During a fetal sonogram two weeks before he was born my husband and I had learned that his brain was missing a significant amount of white matter. When Calvin heard my voice he opened his deep indigo eyes for the first time and tears of joy, trepidation and exhaustion filled my eyes. At four months Calvin began all types of therapy to facilitate his extraordinarily slow development. Cerebral palsy compromised his strength and coordination. We spent our days and weeks visiting a myriad of specialists for his various health issues. Though grief-stricken and despondent with our situation we were still falling in love with our little boy.
But then we met with a savage monster that eclipsed all other adversity we had yet encountered. That monster was, and continues to be, epilepsy. Calvin's first seizure was a grand mal seizure. Even with strong medication Calvin continued to suffer seizures that came in large clusters and at times developed into status epilepticus, a prolonged seizure that can often lead to death. But Calvin, our little peanut, is such a trooper. After each attack he has bounced back, at least partway. His resilience and tenacity are formidable. I imagine Calvin's spirit to be bigger than this monster. Despite this battle he wages, Calvin has enriched our lives beyond explanation. He has taught us to delight in simple things, to have patience, to take nothing for granted. And if this monster ever takes our boy away from us we will still be left with the memory of his sparkling eyes, his infectious smile, his hearty giggle and his sweet hugs and kisses on the nose. It is because of Calvin that we persevere in the same way that he does. Calvin is my hero, my little muse, my inspiration and the one who makes me want to be a better person every day.