shitty sunday (not to be read while eating)

6:15  (At the very latest) wake up because Calvin has to get his seizure meds on time.
6:20  Prepare Calvin's seizure meds.
6:30  Make coffee.
6:35  Prepare Calvin's breakfast.
6:45  Hug Michael and Calvin.
6:50  Go back upstairs to put adhesive bag over Calvin's weenie to collect urine so it does not contaminate the stool sample we are hoping Calvin will produce.
6:55 Back downstairs. Put on Calvin's bib and encourage him to open his mouth for his nine anticonvulsant pills stuck into spoonfuls of yogurt and—with a little coaxing—he does.
7:00 Offer Calvin sausage, which he picks up, rolls around in his fingers then tosses on the ground.
7:01 Not eating ... again. 
7:05 Walk Calvin around and around and around the house and the yard holding his harness and trying not to let him bite the bookcase and the banisters, which have begun to splinter as a result.
7:15 Wave goodbye to Michael who goes to get Frosty's donuts.
7:25 Welcome Michael home, carrying white bag of Frosty's donuts.
7:30 Take random bites of Frosty's donuts whenever within reach of plate during loops around the house with Calvin.
7:40 Listen to The Who—on vinyl—loud.
7:50 Urine bag full but no stool so have to peel bag off of Calvin's package then start over with a second bag.
8:00 Slurp cold coffee with more random bites of donut during more loops around the dining room table and kitchen.
8:15 Offer Calvin more food which he refuses again, even donut.
8:30 Michael takes Calvin while I deadhead some dried flowers, accidentally cutting off several buds that are about to bloom. Shit.
8:45 Say goodbye to Michael who goes to work in his studio for much of the day, today.
8:50 Go to change small poopy diaper. Not enough for a stool sample. Shit.
8:51 Peel off soiled urine collection bag and replace with a third one, but this time—incredulously—over Calvin's butt hole as was recommended to try. Secure top part with black electricians tape to ensure no urine seeps in and contaminates stool.
9:00 Offer Calvin food again and, while he is chewing, notice that he begins to make poopy face.
9:01 Unbuckle Calvin from high chair (cannot make poops easily while sitting in chair.)
9:05 Feed Calvin while he is standing up, restrained between my legs, as I hold his harness tightly, hoping he shits.
9:10 Calvin finally takes a few bites of sausage, pitted cherries, yogurt and Cracklin' Oat Bran cereal.
9:15 Calvin refuses to eat any more but makes another poopy face.
9:20 Calvin crawls around on floor in circles and begins to make poopy sounds.
9:25 Check Calvin's diaper to see large poop inside of plastic collection bag. Eureka!
9:30 Carry Calvin upstairs to change diaper. Peel off specimen bag full of mushy poop.
9:40 Put Calvin into bed, raise safety panels, secure safety net, give Calvin his toy football to bite.
9:45 Scoop out tiny globs of stool from plastic collection bag and spoon into test vials. Yellow-top is shaken and kept at room temperature, white-top is frozen, both to be sent by FedEx to lab in Kansas sometime after we do this entire thing—plus a urine specimen—again tomorrow.
10:00 Write about my shitty Sunday morning and smile.

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Do not try this at home unless you have to.

the trouble with drugs

These drugs are the bane of my existence—of Calvin’s existence—in some ways perhaps more so than the seizures themselves.

After Calvin’s epilepsy diagnosis, when he was barely two years old, an adult neurologist prescribed his first anticonvulsant drug, Trileptal. Calvin went berserk (the neurolgist had prescribed a dose twice what was appropriate for Calvin’s weight) so after three days a pediatric neurologist recommended we change to Keppra. Six months later, after a life threatening forty-five minute seizure, we switched Calvin to a third drug, Depakote, which caused him to become a zombie, losing many of the skills that had taken him months, if not years, to acquire. When the Depakote failed to control his seizures and began adversely affecting Calvin’s liver we put him on three new drugs all at once—Lamictal, Clonazepam and Zonegran—increasing them every few weeks until he was at or above a therapeutic level of each. But then Calvin started having a different kind of seizure, a tonic-clonic (grand mal) seizure, which became his most common type. I have little doubt that the advent of these seizures was due to a toxic level of Lamictal.

After three years on three drugs (while trying two dietary treatments as well) yet still suffering a dozen or more tonic-clonic seizures every month, we began weaning Calvin off of the Clonazepam, an addictive relative of Valium, which caused him to have withdrawal seizures nearly every day. So we added on a fourth anticonvulsant drug, Clobazam, purchased from Canada and which eased the withdrawal and allowed us to slowly (like molasses) wean Calvin completely off of the other three.

A relatively low dose of the Clobazam worked well to squelch his seizures for a while, but the honeymoon never lasts forever and the seizures began increasing again. So every time Calvin had a cluster of them we increased the drug. Eventually, when it appeared we had nearly maxed out the Clobazam’s efficacy (and Calvin’s ability to withstand its side effects) we chose to add a second drug, Banzel. The seizures plateaued, then started to increase again so we added a third drug, one he’d tried five years prior, Keppra.

This last Spring, we changed to Keppra XR (extended release) thinking it might eliminate the stubborn seizures that kept occurring at the same time of day, just before his evening dose of seizure medication. Sadly, that didn’t solve the problem but instead caused us to regularly peel Calvin off of the ceiling, so we recently switched back to Keppra regular release. Now we are waiting to see the results, and planning to reduce the Keppra some since Calvin is still a manic little eight year old bag of bones, no doubt in my mind because of the Keppra. The sickening catch-22 is that Keppra’s the drug that has seemed to control his seizures the best.

Calvin has tried nine different courses of anticonvulsant drugs in six and a half years. The weaning process can take what seems like forever, changes so incremental so as not to trigger a life-threatening spate of seizures. And, the trouble with drugs (besides the fact that most people with epilepsy have to take them) is that it’s anything but clear which meds are helping reduce the seizures and which drugs are causing which of the heinous side effects. It’s always a gamble when deciding to reduce or increase any drug.

I guess what I’m trying to say is that the trouble with drugs is the effing drugs.

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friday faves - monotony

My sister-in-law called me a couple of weeks ago, as she does on occasion, just to check in and see how we’re doing. She asked after Calvin and I told her he seemed to be having only slightly fewer seizures but, all in all, was doing pretty well. I went on to say that, although Calvin is generally happy—easily brought to euphoric giggles and grins when we nuzzle our faces into his neck, press our lips to his cheeks, wrap our arms tightly around him—that once in a great while when I'm running low on steam—and I know this might sound crass—I feel raising him is in ways like raising a farm animal or a dog: you feed them, you tend to them when they are sick, you clean up after their messes, you make sure they get regular exercise—you know, take them out for walks—and, although they might understand a few simple commands, you can’t bring them anywhere.

She listened intently. I continued, adding that although I have long since given up any grave concern over his missed milestones—Calvin’s developmental gap ever widening with each passing year as he continues to engage in the same activities with nearly the identical skill as he did when he was two or three—that I experience limited joy in the daily life of raising Calvin. Our days are monotony punctuated with a sprinkle of warm cozy snuggles for which I am incredibly thankful.

The only thing that came out of my sister-in-law’s mouth was, “I’m sorry.” I couldn’t have asked for a better gift from her. She didn’t try to tell me things would get better. She didn’t persuade me to look at the bright side. She didn’t try to say it wasn’t so. She didn’t exclaim, “everything happens for a reason.” She simply listened and said she was sorry. In doing so she totally validated my regret, and I am completely grateful, for I knew she understood that my love for Calvin runs deep and solid as an aquifer—that the two feelings of mine could rightfully, naturally coexist.

We finished our conversation with I love yous. I hung up the phone and went back to preparing Calvin’s dinner, drew up his pink liquid medicine in a syringe, cut his pills and began feeding him. I cleaned him up, brushed his teeth then Michael took over the nightly routine of walking Calvin’s burps out before changing his diaper and putting him to bed. I poured myself a glass of wine and with it I retreated to my garden sanctuary hoping to bring back some semblance of self, while waiting anxiously for Michael to join me.

Tomorrow will likely be another day just like today, just like yesterday ... and the day before that ... and the day before that. But as I reread what I have written, I realize that perhaps, in the same way I push Calvin to step outside of his comfort zone in order to make strides, I need to do more of the same myself in an effort to put an end to the monotony. Or just dive into a few more tickle-fests than usual.

Originally published 7.25.11.

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on god and good teeth

Just after sitting down in a booth with my husband over a cup of coffee and a ridiculously fresh Boston cream donut, I found myself reclined in a dentist’s chair, my tongue still covered in that gritty-greasy film that a good donut leaves you with.

Between swabs of gel anesthesia, needles full of novocaine, sharp and shiny stainless steel instruments and rubber-gloved fingers all poking around in my mouth, I had a pseudo conversation about my disabled son with the hygienist.

After telling him a little bit about Calvin, the hygienist, a handsome, kind, funny guy, asked how Calvin reacted at the dentist. I told him that he did pretty well all in all. He mentioned that in college he’d written a paper about the dental health of "mentally retarded" people (his girlfriend at the time having been working with the intellectually disabled.) He explained that he’d read papers about how this segment of the population was missing an enzyme that caused tooth decay, so although they had great trouble with tartar forming on their teeth, they didn’t get cavities. He went on to say something like, “It’s the good Lord’s design”—that God had given these kids cavity protection by designing their bodies is such a way as to avoid them. He explained how, being a religious man, he believed it. With a suction hose in my numb mouth I mumbled, “I don’t buy it,” and we both laughed. What else was there to do?

My head was reeling, though not from the anesthesia or the bright light spotted on my face. Why would God go to all the trouble to protect these kids’ teeth but do nothing to protect their brains? And I don’t buy the line that God works in mysterious ways and that we can’t always know or understand his plan. What kind of divine plan—or its maker—includes the sanctioning and/or neglect of the suffering of debilitated, sick and terminally ill little kids and their families? Not one I can or would want to believe in.

I remember a fellow alumnus from my high school, upon hearing that Calvin was a happy little kid, telling me how God creates mentally disabled kids with sweet dispositions just "to make the road a little easier." Well, if I believed in that God I’d say He’d stopped way short of His potential.

Meaning no disrespect to the devout and their own private beliefs—or to the affable hygienist who I can imagine calling my friend—sometimes I think I’d prefer being stabbed in the gums with a sharp instrument over hearing theories of how my kid—and others like him—was intentionally designed, by a supposedly all-loving, omnipotent Creator, to live a life of suffering. But hey, at least they won't get cavities!

photo by Michael Kolster

classic calvin

photos by Michael Kolster

nine times

Nine times fall down, Nine times pick yourself up.

—Tibetan proverb

photo by Michael Kolster

the dream

Two-thirty a.m., my eyeballs jerking and roving bathed in REM, the baby monitor hissing in my subconscious while dreaming of the President who is my good buddy. I built him a sculpture made of chicken wire and wax to take with him on vacation. Lucky guy.

I noticed Calvin in the corner of the room, under the window on the hardwood, as if he’d been tossed there like a rag doll just like the kid in the movie I’d watched earlier that night. His bluish face appeared like a little monster—jagged teeth, eyes half-crossed—and looked as if he’d eaten something rotten. Skinny arms and hands collapsed into a crippled pile in his lap, just behind his little drawn-up knobby knees. He was seizing.

Sharply, I awoke sweating, trying to shake off the dream hoping it was just that—a dream. And it was, but the fear and sour taste of it no different than the real thing, than any seizure I’ve seen my little boy have. These seizures gouge a pit in my stomach, carve deep into my heart, raise the bile in my gut. They’ve etched a loathsome pattern of worry into my skin—perhaps just under it—or maybe even into the marrow of my bones. No matter how many, they don’t get any easier and even if there are fewer I still wait for them around every corner, can’t let my guard down.

But I went on back to dreaming, thought afraid I’d dream of one again. Instead I think I dreamt of something like how Jemaine, from The Flight of the Concords, was my boyfriend, or perhaps I dreamt again of breathing underwater, or of my brother taunting and teasing me, or of my beautiful Calvin running to me across a golden field calling, "Mama, Mama, Mama."

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