We cruise seventy miles an hour down I-95 rocketing to Boston having left just before seven o’clock. I got Calvin to take the first part of his breakfast before we all loaded into the car—that being one-half lavender Levoxyl pill for hypothyroidism, followed by three anticonvulsants, including one-and-a-half white Clobazam pills, two powder blue Keppra tablets, three smoky salmon-colored Banzel tablets, then one large, chalky Carnitor for metabolizing long-chain fatty acids and one-half of a large bubblegum pink coated Amoxicillin pill for his ear infection. All of these I sink into Calvin’s yogurt, which he chases with a pink mixture of potassium citrate and Miralax dissolved in water. The breakfast of champions, I bitterly say to myself.
I finish feeding him a few bites in the car, take a swig of hot coffee from the thermos, munch on my toasted bagel and begin to write. I catch up on long-overdue email replies, edit and re-edit several blog posts while Calvin sits next to me fondling my face with his soft fingers, trying to stick them into my mouth, grabbing my nose, stroking the hair at the nape of my neck like we both enjoy so much.
Two and a half hours later, at the neurologist, two women in white lab coats busy around Calvin snapping latex gloves onto their hands, preparing seven slender clear vials with colored plastic caps, securing labels with his name and date of birth onto each tube. One technician stretches rubber strapping around Calvin’s exposed arm and ties it off, pinching his skin a little. Then she sticks him with the fine butterfly needle and blood flows looping through the thin plastic tube into each vial. Calvin sits sedated in Michael’s lap as the thick red pours out of his vein.
He’s sick with a virus and extra drugged-up having lost so much weight since the initiation of his third anticonvulsant drug. “The medications are hitting him harder at this lower weight,” the neurologist says, confirming the painful truth. We discuss his recent sleeplessness—and mine. “He awoke at 1:45 this morning and never went back to sleep,” I told them, “rubbing his head and kind of moaning the entire time even though I gave him a Tylenol.” He’s been like this for weeks on end—headachey, not sleeping, no appetite. He’s taking enough of these mind-numbing chemicals into his little body to bring Muhammad Ali—in his prime—to his knees in drunken, drugged oblivion. We could all see the weariness in Calvin’s face, his sad expression, droopy, sunken eyes, the dark circles that have formed under them. It’s the same look I’ve seen on other kids with epilepsy. Sickly. Anemic. Half awake.
While writing this now Calvin hangs out in his johnny-jump-up rubbing his head into his palms until his hair dreads then breaks off. He can’t stop poking his eyes; must bring him some kind of relief from a dull pounding behind them. He seems to be eating less each day and I hope he doesn’t become anorexic, though that’s listed as one of Keppra’s side effects, the loss of appetite one of Banzel’s.
Besides the fact that it is clear Calvin feels like hell, there is no doubt in my mind that he would be walking completely by himself if it weren’t for the drugs. I can remember years ago we were sure he’d be walking all over the place, without our spotting, by his third birthday. Never happened. He’d be doing a lot of things now that he isn’t doing because of the drugs—and the seizures of course. No way around it but a cure that seems to be as elusive as words coming out of my boy’s confused, drooling, uncoordinated, drugged-up mouth that I have to stuff with pills again and again—perhaps for the rest of his innocent little suffering life.
I think of all the prayers people are saying for Calvin and wish, instead, they’d share Calvin’s story and help me tell the world that we need a cure. If only they knew how their voice could carry on the wind, could spark a movement, incite change. Until we have a cure Calvin will have to keep eating the nasty breakfast of champions, though a little champion he most definitely is.
In honor of epilepsy awareness month please share Calvin's story with others. Awareness is the first step toward finding a cure. Please find it in your heart to help.
I discovered your blog through the CURE website and have been reading all the entries ever since. As a mother of a child diagnosed with a seizure disorder, I find your writing devastatingly beautiful, poignant, and important. I thought that I would let you know that we are out here following your struggles while fighting our own battles, and doing everything within our power to spread the word about the absolute soul gutting nature of this disease.
thank you so much for reaching out. it really means the world to me since sometimes i'm not sure if i am reaching a new audience. i think this month has been a success for epilepsy awareness.
thank you too for your kind words. there is nothing more i like doing than advocating for calvin, as i am sure you know as a mother of a child with epilepsy.
take good care and keep sharing.
Big hugs to all of you....ReplyDelete
thank you so much!ReplyDelete
Your readers should know that the cure is raising funding through DEC 15th and they have a donor who will match any money that donors give through now till DEC 15th. So this is a perfect time to give since your dollars will be matched. So give now and double the money raised.