Yesterday morning I wrote in the journal “day 10.” Calvin has been doing great lately, a good string of days since his last seizure and little to no manic behavior to speak of, save some hyperactivity at meals once in a while which we chalk up to being excited about eating. But we haven’t been able to eke out much more than nine or ten days between seizures in recent months, even with several drug increases. As a result his balance tends to be precarious and I am convinced it is due to the medication.
All day long Calvin refused to walk his usual paths around the perimeter of the house. Instead, he’d collapse, laughing hysterically at our coaxing, then just plop himself on the ground and sit there. So, Michael and I buckled him into the stroller, put Rudy on the leash and took a walk across the college campus to get some ice cream.
First-year students are beginning to arrive for orientation and I watched a handsome young man say goodbye to his sharp dressed parents in front of a stately old brick dormitory. I’ll never do that with Calvin, I thought, and felt the twinge of loss that I probably feel daily for one reason or another.
A few minutes later, ice creams in hand, we parked ourselves on a bench aside the shack as the Blue Angels streaked across the white sky, their deafening thunder enough to make me want to cover my ears. Rudy, unfazed by the racket, sat attentively waiting for the last bit of cone that he knows I usually reserve for his treat. “Is it okay to give Calvin a bit of my yogurt?” Michael asked, “it’s sugar free.” Having recently liberated Calvin from his rigorous, exacting Ketogenic diet, I said, “probably.” Michael spooned in a bit of his mixed berry frozen delight and Calvin laughed, the yogurt dripping out the side of his half open mouth. He seemed to like it, though perhaps his peculiar laugh was more due to a painful ice cream headache, or worse—a looming seizure.
The entire way home Calvin squealed and writhed spasmodically in the stroller, which he hasn’t done much lately. The events of his day caused us to worry that a seizure was brewing, but he got through bath and dinner unscathed, and then led us outside to walk around the house clad in skinny, unmatched pajamas and felt slippers. Michael took the reins while I grabbed my camera. The fading light was beautiful, it was the calm before the storm—Hurricane Irene on its way. As Calvin and Michael circled around the car I picked off a few good shots then noticed smiling Calvin go stone-faced and silent. “Uh-oh,” I said and crouched down to regard his face. He stiffened and pitched back into Michael’s arms, who then carried him like a bundle of sticks, or a board, into the house. By the time we got Calvin to the couch his face was dark and ashen, like the skin of an unpicked blueberry. We caressed his face, Michael kissed his head, while we waited for it to end.
Thankfully, the seizure was shorter and less violent than most, perhaps a sign that the drugs are helping, albeit not well enough. Sure that it was over Michael carried our sweet little disoriented boy upstairs and tucked him into bed, then slung the baby monitor around his head to listen. Outside the rain began to fall and the wind kicked up. Our first hurricane in Maine was about to arrive, perhaps our last, but for Calvin it’s one vicious storm after another.
All day long Calvin refused to walk his usual paths around the perimeter of the house. Instead, he’d collapse, laughing hysterically at our coaxing, then just plop himself on the ground and sit there. So, Michael and I buckled him into the stroller, put Rudy on the leash and took a walk across the college campus to get some ice cream.
First-year students are beginning to arrive for orientation and I watched a handsome young man say goodbye to his sharp dressed parents in front of a stately old brick dormitory. I’ll never do that with Calvin, I thought, and felt the twinge of loss that I probably feel daily for one reason or another.
A few minutes later, ice creams in hand, we parked ourselves on a bench aside the shack as the Blue Angels streaked across the white sky, their deafening thunder enough to make me want to cover my ears. Rudy, unfazed by the racket, sat attentively waiting for the last bit of cone that he knows I usually reserve for his treat. “Is it okay to give Calvin a bit of my yogurt?” Michael asked, “it’s sugar free.” Having recently liberated Calvin from his rigorous, exacting Ketogenic diet, I said, “probably.” Michael spooned in a bit of his mixed berry frozen delight and Calvin laughed, the yogurt dripping out the side of his half open mouth. He seemed to like it, though perhaps his peculiar laugh was more due to a painful ice cream headache, or worse—a looming seizure.
The entire way home Calvin squealed and writhed spasmodically in the stroller, which he hasn’t done much lately. The events of his day caused us to worry that a seizure was brewing, but he got through bath and dinner unscathed, and then led us outside to walk around the house clad in skinny, unmatched pajamas and felt slippers. Michael took the reins while I grabbed my camera. The fading light was beautiful, it was the calm before the storm—Hurricane Irene on its way. As Calvin and Michael circled around the car I picked off a few good shots then noticed smiling Calvin go stone-faced and silent. “Uh-oh,” I said and crouched down to regard his face. He stiffened and pitched back into Michael’s arms, who then carried him like a bundle of sticks, or a board, into the house. By the time we got Calvin to the couch his face was dark and ashen, like the skin of an unpicked blueberry. We caressed his face, Michael kissed his head, while we waited for it to end.
Thankfully, the seizure was shorter and less violent than most, perhaps a sign that the drugs are helping, albeit not well enough. Sure that it was over Michael carried our sweet little disoriented boy upstairs and tucked him into bed, then slung the baby monitor around his head to listen. Outside the rain began to fall and the wind kicked up. Our first hurricane in Maine was about to arrive, perhaps our last, but for Calvin it’s one vicious storm after another.
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