gift of hope

Nine long years ago today I awoke in a large spot of amniotic fluid in the middle of the night in the middle of an ice storm. We were all set—we thought—to deliver Calvin by scheduled Cesarean in Boston three days later, but he decided to come on his own ... six weeks early.

The images of that day I recall often, though not in the way I'd expected to remember them, but in a manner close to reliving a nightmare. The Medivac helicopters had been grounded making our trip south impossible. The Boston specialists who had reviewed our case in the previous weeks and who were slated to be by our side during delivery—the obstetricians, the neonatologists, the pediatric neurologists, the pediatric neurosurgeon, the anesthesiologists, even the blood bank donor platelets—would not be there. Instead, my husband and I spent hours explaining in intricate detail what an intricately effed-up brain our son had and how delicate his extraction needed to be.

Calvin survived against all odds. He fought with the CPAP, the IV and its splint when he was just hours old. His Apgar scores were ridiculously low and his heart rate and respiration were dangerously high, two to three times what they should have been. It wasn't until seven weeks later, when he was able to nurse efficiently, that we brought him home from the hospital where I had stayed with him the entire time as Michael shuttled back and forth between there, work and home.

To add insult to injury, Calvin was diagnosed with epilepsy when he was just two years old. He'd already struggled to hold his head up, struggled to see, to crawl, to stand and to walk. But the worst of his struggles have been the endless seizures and the terrible, debilitating side effects of the drugs used to treat them—to mask them—albeit without complete success.

This, Calvin's ninth birthday, will be a day like any other for him. He appears to have no awareness of what a birthday is, of parties and gifts and cakes and candles and wishes. We choose to celebrate his hard fought life by hosting a fundraiser, to which I hope many of you will brave the storm to attend. So today, if you have it in you, please give Calvin the gift of hope for a cure for epilepsy at: http://www.calvinscure.com

photo by Michael Kolster

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