Last night, for the first time in a long time, I feared losing my boy. That helpless, panicky feeling that I’d hoped never to experience again was fresh and stirring like I imagine the scent of coffee, alcohol or cigarettes is for hopeless addicts who’ve long since given them up—only the sensation for me is putrid.
We were all enjoying Calvin's twenty-third day of apparent seizure freedom—a longer stint than he’s had in over four years—after having introduced a third anticonvulsant drug to his regimen. I’d begun to hope that perhaps we’d found the silver bullet we’ve been searching for for so long.
Downstairs, Michael was packing for a week’s long trip to Virginia to shoot the James River while I was perched at my desk futzing around on the Internet. A calm yet telling voice tumbled down to us from the bathroom at the top of the stairs. It was Stacey, Calvin’s nurse. “Christy,” she called, and I ran. I reached her just before she laid Calvin on our bed. His body was stiff and awkward to hold, as if she were carrying an ironing board or perhaps a large skateboard, their silhouette appearing like a grotesque cross before the large windows overlooking our backyard. I quickly grabbed a towel from the linen closet and spread it over Calvin’s trembling body. His face was chillingly blue—and getting bluer—his eyelids and lips a purplish-gray reminiscent of gruesome zombies that haunt the streets at night each Halloween. I hadn’t seen that dark, sickening color in what seemed like years—not since our days of ambulances, paramedics, emergency rooms, intensive care units and intubations. He wasn’t convulsing violently like usual—rather twitching—but his respiration had ceased.
“He’s not breathing—at all—what do we do?” I begged his nurse. In a calm voice she replied, “let’s just give him a minute.” Her words were the reassuring, unflappable words of the trauma unit nurse she’d been. “Breathe, baby, breathe,” I cried, while stroking a thick lock of his slick wetted hair. Michael leaned in and kissed the nape of his neck passionately. “Come on Calvin,” he pleaded. Rudy moved in and tried to lick our faces. Tears began flooding my eyes, while Calvin's stared vacantly—large black disks rolling back into his head. No air passed over his lips. It was as if his throat were clamped shut, sealed in a vacuum, stopped up with some morsel of food, a grape perhaps. I wondered if he’d taken in water from the bath when he collapsed forward. Might he be drowning inside? I thought.
After several minutes his blocked airway was finally breached by one sweet, short breath, and then another, until the color began returning to his face, his charcoal lips resuming their rosy tint. This was unlike any grand mal seizure I’d seen Calvin have—silent and macabre. Concerned, the nurse said something like, "this is the kind of seizure you could miss because you wouldn’t hear him." Silent. Deadly, I thought.
Earlier in the day I’d spent hours thinking about an acquaintance’s boy, Ronan, my friend’s little seal. Images of her and her terminally ill toddler lurk in my thoughts daily. I try to walk in her shoes, wonder what it must be like realizing her child is dying, day by day, hour by hour, minute by minute, but not knowing at what moment he’ll be swept away in a breath, never to touch, to kiss, to embrace again. These are the pains she must feel constantly, embedded in the softness of her being like some inky tattoo that is both devastatingly beautiful to behold yet painful, toxic and deadly. I experience the intensity of these feelings only fleetingly, though I know the knowledge of my boy's mortality gnaws at the bones of my subconscious every waking hour then follows me into my dreams.
Deep sleep never came over me last night. I went to Calvin’s bedside with every whisper of his sheets, each whimper, each sigh, hoping not to find him face down and lifeless in his pillow. Now, even silence feels deadly.
Please share Calvin’s story with others. Help bring us one step closer to a cure for epilepsy. It's as easy as pushing a button. We so need your help.
We were all enjoying Calvin's twenty-third day of apparent seizure freedom—a longer stint than he’s had in over four years—after having introduced a third anticonvulsant drug to his regimen. I’d begun to hope that perhaps we’d found the silver bullet we’ve been searching for for so long.
Downstairs, Michael was packing for a week’s long trip to Virginia to shoot the James River while I was perched at my desk futzing around on the Internet. A calm yet telling voice tumbled down to us from the bathroom at the top of the stairs. It was Stacey, Calvin’s nurse. “Christy,” she called, and I ran. I reached her just before she laid Calvin on our bed. His body was stiff and awkward to hold, as if she were carrying an ironing board or perhaps a large skateboard, their silhouette appearing like a grotesque cross before the large windows overlooking our backyard. I quickly grabbed a towel from the linen closet and spread it over Calvin’s trembling body. His face was chillingly blue—and getting bluer—his eyelids and lips a purplish-gray reminiscent of gruesome zombies that haunt the streets at night each Halloween. I hadn’t seen that dark, sickening color in what seemed like years—not since our days of ambulances, paramedics, emergency rooms, intensive care units and intubations. He wasn’t convulsing violently like usual—rather twitching—but his respiration had ceased.
“He’s not breathing—at all—what do we do?” I begged his nurse. In a calm voice she replied, “let’s just give him a minute.” Her words were the reassuring, unflappable words of the trauma unit nurse she’d been. “Breathe, baby, breathe,” I cried, while stroking a thick lock of his slick wetted hair. Michael leaned in and kissed the nape of his neck passionately. “Come on Calvin,” he pleaded. Rudy moved in and tried to lick our faces. Tears began flooding my eyes, while Calvin's stared vacantly—large black disks rolling back into his head. No air passed over his lips. It was as if his throat were clamped shut, sealed in a vacuum, stopped up with some morsel of food, a grape perhaps. I wondered if he’d taken in water from the bath when he collapsed forward. Might he be drowning inside? I thought.
After several minutes his blocked airway was finally breached by one sweet, short breath, and then another, until the color began returning to his face, his charcoal lips resuming their rosy tint. This was unlike any grand mal seizure I’d seen Calvin have—silent and macabre. Concerned, the nurse said something like, "this is the kind of seizure you could miss because you wouldn’t hear him." Silent. Deadly, I thought.
Earlier in the day I’d spent hours thinking about an acquaintance’s boy, Ronan, my friend’s little seal. Images of her and her terminally ill toddler lurk in my thoughts daily. I try to walk in her shoes, wonder what it must be like realizing her child is dying, day by day, hour by hour, minute by minute, but not knowing at what moment he’ll be swept away in a breath, never to touch, to kiss, to embrace again. These are the pains she must feel constantly, embedded in the softness of her being like some inky tattoo that is both devastatingly beautiful to behold yet painful, toxic and deadly. I experience the intensity of these feelings only fleetingly, though I know the knowledge of my boy's mortality gnaws at the bones of my subconscious every waking hour then follows me into my dreams.
Deep sleep never came over me last night. I went to Calvin’s bedside with every whisper of his sheets, each whimper, each sigh, hoping not to find him face down and lifeless in his pillow. Now, even silence feels deadly.
Please share Calvin’s story with others. Help bring us one step closer to a cure for epilepsy. It's as easy as pushing a button. We so need your help.
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| Calvin after his seizure, photo by Stacey Morse |
Christy,
ReplyDeleteI had known pretty much nothing about epilepsy (except for a very precise high-far diet that I had once read about in the nyt) and I still know v little about it, but reading your blog has opened my eyes to the disease and to the challenges that epilepsy sufferers and their parents go through every day. I respect and admire you so much for being such a terrific mum to Calvin. He's such a lucky boy to be in such a loving home. I hope you continue to find strength despite these ferocious attacks. Hugs from hong kong, Jo.
dear jo,
ReplyDeletethank you so much for reaching out and writing to me. i am glad to hear that i seem to be accomplishing my goal of raising awareness. that means the world to me as you might begin to understand.
thank you for your kind and loving words. i was in hong kong once by myself many years ago for work and enjoyed getting out of the tourist sector and into back allies to eat some of the scrumptious foods (i knew not what i was eating) from the street vendors!
xo, christy
Christy your blog is amazing. It was shown to me about a year ago by the mother of two little girls I babysit for (one of who was diagnosed with Epilepsy about two years ago) and I have been reading it since, sometimes weekly, sometimes daily. I myself am studying psychobiology and special education and have always been fascinated by seizures. It’s such a spectrum term and so unknown by the general public as well researchers and medical professionals. I applaud you for your courage to share your story, your frustrations, your happiness and raw emotions with the world. I’ve seen many different types of seizures and it still makes my heart ache no matter how many times you experience it, and reading about Calvin’s is no different. I’m doing my best to share your story with others, and I am sure you don’t need to hear it but stay strong and one day the world will be better place for those with seizure disorders.
ReplyDeleteKatie