As I left the house with my girlfriend last night I sighted brilliant Orion in the stark sable sky. He loomed low and large, his powerful legs grazing the tops of the giant pitch-black pines. I shrugged my shoulders against the near-zero cutting darkness, and I wondered if tonight Orion would watch over and protect my son.
I had spent the day with melancholy. It comes over me sometimes, and when it does I ponder what went wrong during my healthy pregnancy that caused my sweet boy to be so severely disabled. I grieve over the loss of moments that I still dream about such as chasing Calvin barefoot in the backyard, frolicking amongst warm ocean waves, messing our faces with dripping ice cream off of sweet sugar cones, skating hand-in-hand on a makeshift rink—our scarves sailing at our backs—or drawing sunny pastel pictures for each other that say “I love you.”
Later I came home, crawled into bed and drifted off, my melancholy dulled by chatter with old friends over crimson pomegranate margaritas and then dissolving into the nothingness of sleep. But at three-thirty I was bluntly awoken by the familiar sound of Calvin’s seizure cry.
I cannot adequately describe the helpless feeling of watching my innocent child endure a three or four minute seizure during which I can only stand by and wait. Any words of consolation I can utter are as much for myself as for my Calvin—who is deaf to them—lost in the seizure’s oblivion.
In bed with me after the seizure, Calvin’s aftershocks—the shudders, jerks and trembling—cause him to writhe. I startle as choking sounds come forth from his little throat. I hold stone still and alert in the dark for fear he’ll roll into another seizure. But he doesn’t, and finally his soft body calms and surrenders to sleep, with his thumb in his mouth, my hand on his hip and the other clutching his delicate, cool feet.
Lying there in the warm bed next to Calvin I experience my own aftershocks. My day’s companion— melancholy—returns to visit bringing despair and emptiness, a reminder of the infinite losses I endure, and a hopeless question of ever being released from this sad, mundane, crippled existence.
Please donate to epilepsy research at:
http://www.calvinscure.com
I had spent the day with melancholy. It comes over me sometimes, and when it does I ponder what went wrong during my healthy pregnancy that caused my sweet boy to be so severely disabled. I grieve over the loss of moments that I still dream about such as chasing Calvin barefoot in the backyard, frolicking amongst warm ocean waves, messing our faces with dripping ice cream off of sweet sugar cones, skating hand-in-hand on a makeshift rink—our scarves sailing at our backs—or drawing sunny pastel pictures for each other that say “I love you.”
Later I came home, crawled into bed and drifted off, my melancholy dulled by chatter with old friends over crimson pomegranate margaritas and then dissolving into the nothingness of sleep. But at three-thirty I was bluntly awoken by the familiar sound of Calvin’s seizure cry.
I cannot adequately describe the helpless feeling of watching my innocent child endure a three or four minute seizure during which I can only stand by and wait. Any words of consolation I can utter are as much for myself as for my Calvin—who is deaf to them—lost in the seizure’s oblivion.
In bed with me after the seizure, Calvin’s aftershocks—the shudders, jerks and trembling—cause him to writhe. I startle as choking sounds come forth from his little throat. I hold stone still and alert in the dark for fear he’ll roll into another seizure. But he doesn’t, and finally his soft body calms and surrenders to sleep, with his thumb in his mouth, my hand on his hip and the other clutching his delicate, cool feet.
Lying there in the warm bed next to Calvin I experience my own aftershocks. My day’s companion— melancholy—returns to visit bringing despair and emptiness, a reminder of the infinite losses I endure, and a hopeless question of ever being released from this sad, mundane, crippled existence.
Please donate to epilepsy research at:
http://www.calvinscure.com
I wish I was unable to relate to this post. :( My daughter had a big seizure the other day and the aftershocks break my heart. At least during the big part of the seizure I know she is unaware. The aftershocks upset her and make me cry. ((hugs))
ReplyDeleteOh Christy...Tears well up as I think of the losses you know, losses I can feel too when I read your blog. You are using the juices of your agony and your talent to help us understand...and to make CURE a possibility. Head up and shoulders back, Christy. The future always has possibilities. more hugs.
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