tag teaming

The cardinals outside a downstairs window are working hard to feed three or four chicks nesting in the shelter of a large rhododendron. Rain comes down hard at times, and steady. I notice, out the window at the base of the stairs, that one of the chicks has flown the coop and sits puffed up like a ball of fuzz in the hydrangea awaiting its parents to feed it bits of food. The parents tag team, bright red father then brown mother with her day-glow orange beak. They seem to be trying to draw the chick from its perch, the little defenseless chick with no tail to speak of.

Upstairs, and in Michael's absence, my lovely friend Lucretia minds my chick as he sleeps in my bed, dried vomit on his face and sleeves and on the towel I used to catch it. My robe is sour and stained, my hair tangled with the same pungent spit up. He puked up his seizure meds while in my arms not long after I gave them. I picked out the half dissolved ones from the yellow, frothy, phlegmy goop, and redosed them when he woke up and gave him an extra Clobazam just in case.

Lucretia arrived before eight. She hugged me and rubbed my back and brought me coffee and slept with Calvin and stripped the beds and made them up and hugged me some more and told me she could stay as long as I needed. I took a shower and put in a load of stinky laundry. We sat and ate warm oatmeal while Calvin recovered some in the jumper. My little bird still isn’t eating or drinking. The chicks outside are famished.

All parents work so goddamn hard, I think, harder even when their kids are sick, some impossibly so. Thank goodness for the tag team. Thank goodness for Lucretia.

me and Lucretia

graduation day

Graduation day approaches. All but the seniors have gone back home. In the fields enormous white tents have been erected awaiting literally thousands of hungry graduates, parents and siblings who will soon bespatter themselves with two thousand lobsters aside drawn butter, steak, chicken and corn.

Outside, rain falls softly as I take my evening walk through the backyard gardens with Rudy. In the twilight, rhododendron blooms glow against soaking bark. Under my feet lay a carpet of green and in the still I can hear the college chapel bells ring as they will on graduation day.

This is the time of year when I imagine what it must be like for the students’ parents—many who are my age—when they see their child, their own flesh and blood, accomplish something so great. Their hearts must burst, their eyes brimming at the image of cap and gown and diploma, of suit and tie and frilly summer dress and open-toed shoes and smiles and cheers and hugs and so much pride, enough even for me to leech.

No doubt most of these young adults will go on to do great things. They’ll become doctors and lawyers and journalists and philanthropists and teachers and mathematicians and scientists and  entrepreneurs and writers and editors and politicians. They’ll travel or start their own company or take over the family business. Some will fail and others will get lost. A handful may meet with tragedy. But most of these dapper, elastic college graduates will succeed, enjoy independence, become shining stars.

And though my boy Calvin is only nine, I’m already envious, find myself coveting what these parents and their children have, which is a bright future full of hope and opportunity. I imagine these mothers and fathers and their offspring standing in the serving line under the tent, their spiky heels and oxfords sinking into the lawn as they happily clutch plastic forks and cups, paper plates and napkins. I’ll stroll past the crowd pushing Calvin as he sits performing his usual antics. I’ll be trying to thwart his eye poking and hoping he doesn’t have a seizure. Then, one of those charming college boys will do what they do, which is to tip his head and smile, perhaps say hello. With genuine emotion I’ll return his kind sentiment and then, as we walk on, my heart will most certainly die a silent death.

photo by Michael Kolster

bitter acid

Acid: a word used to describe a substance that dissolves, corrodes. Something bitter, caustic, hurtful, venomous.

Valproic acid, aka Depakote: a popular anticonvulsant used on adults and children, including my son Calvin when he was just two.

An Epilepsy Therapy Project email just sent out a teaser citing a recent discovery that valproic acid (VPA) lowers IQ in kids up to age six and is linked to decreases in brain volume. A friend pointed out that she thinks it occurs when women take it while pregnant, but if that isn't bad enough, whose to say it doesn't happen to infants and toddlers who take it? Regardless, for nearly fifty years it’s been in use as a first-line treatment for epilepsy, bipolar disorder, and, less commonly, major depression. It is also used to treat migranes and schizophrenia.

When Calvin began using Depakote for his seizures I questioned the neurologist’s decision knowing, from my own research, that Depakote is also known to cause liver failure, particularly in children under four, those who have intellectual delays, and who have uncontrolled seizures. Despite my concerns the neurologist prescribed it. Calvin became a zombie. He lost basic skills that had taken him months to develop. He didn’t smile or laugh. He sat like a blob in the middle of the room and took no interest in objects or people. After several months of increased dosing but no improved seizure control the neurologist decided to put Calvin on a second drug, Lamictal, that required weeks of slow titration in an effort to avoid Stephens-Johnson Syndrome and Toxic epidermal necrolysis, both dangerous, life-threatening rashes. Before adding the Lamictal I insisted Calvin have his blood drawn to check his liver functions. His results came back more than ten times higher than what is considered normal, indicating the likely beginnings of liver failure in my sweet little zombie kid. We took him off of the Depakote immediately and had to put him on three replacement medications, including one addictive drug.

I think about Calvin and the fact that the months on Depakote may have shrunken his delicate brain, which was already missing a significant amount of its white matter. I think about the skills he lost, the abyss he’d fallen into, the fear I felt in thinking I might never see him smile again. But then I think of all of the children who were born healthy—normal—with the promise of a bright future, of being educated, of playing sports, developing friendships, meeting sweethearts, marrying and of having children of their own. I think about Lauren and Sophie and the hundreds of thousands of children in this country who develop epilepsy for unknown reasons, who have taken Depakote and who have been robbed of so much of what life has to offer.

But the pain goes deeper, because I know in my gut that every single anticonvulsant drug my son has to take wreaks havoc with his development and well-being and yet don't stop his seizures. As far as I’m concerned they’re all brain acid, which is more than a bitter pill for all of us to swallow.

photo by Michael Kolster

tolerance

The first time I understood tolerance, of the technical kind, was when I learned the craft of designing and producing clothing. Tolerance, in the manufacturing world, is the allowable variance of any given product specification. A disparity beyond the tolerance (for example, an inseam that is too long or too short) is said to be non-compliant and can be rejected by the wholesaler.

Shortly after Calvin began taking drugs for his epilepsy, I learned there are also tolerances in the pharmaceutical world, which is a scary thought at best. This accounts for why some people with sensitive systems or fragile seizure thresholds like Calvin may not do well using generic forms of drugs compared with the brand name versions.

Recently, I faced this problem once again when I picked up Calvin’s synthetic thyroid medication from the pharmacy. I’ve made a habit of opening all bottles before leaving the pharmacy to make sure they’ve given me the correct pills since I’ve learned that this isn’t always the case. This time the pills, though they appeared the same soft lavender color, were a different shape. I asked why, and the pharmacist told me that a generic version had been substituted because the brand name pills were back ordered. She confirmed my fear about the tolerance, so I asked her if there was any other option. She suggested we might try a different brand name drug. At my request she called Calvin’s endocrinologist and pediatrician and the prescription was changed to an alternate brand name drug, ostensibly identical to the one he’s been taking for eight years. I remain dubious.

My fear in using the generic is multifaceted. First, Calvin is enjoying a long seizure-free stint of over thirty days. Calvin’s thyroid levels have been stable for years on the same dose of synthetic thyroid medication and I hate to upset this balance because who knows how that might translate in his body, in his brain. Also, changing drugs adds yet another variable to the conundrum of Calvin’s physical and behavioral symptoms and general well-being, which are difficult to ascertain, making them nearly impossible to assuage.

And, so, with no other acceptable alternatives, we will begin using the new drug in a few days, to be followed up with blood work in the wake of the change to ensure Calvin’s thyroid levels remain within the normal range. Cross your fingers and knock on wood.

Tolerance? When it comes to these drugs that I have to give my kid, I don’t have much.

motoring

"He's an outlaw, he's a One-Percenter, he's a rebel that gives good bikers a bad name.  He just wants to be free; free to ride without being hassled by The Man!"

—Steve Shake, Calvin's unceasingly humorous uncle, upon seeing a photo of Calvin riding his trike.

Oh, and he's really not the kind of one-percenter that you might think.

Scroll right or click on the photo to see entire image.

photo by Mary Booth

enough

There aren’t enough beautiful days, enough songbirds, enough sunlight, enough raging rivers with their froth and toss nor indigo seas to carry it all away.

There is not enough rain to drown these sorrows, melt the dread, distinguish the embers that burn hot and spike inside then spill out in icy stares and words.

There aren’t enough stars to wish away eons of bitterness and loss and despair, while moonlight brightens shadows scantly enough to see a path as lonely as the pines.

It’s impossible to eke out enough sleep, drink enough coffee or bourbon to sufficiently deliver a cool place of meditative calm where skies are so vast and white I go sublimely blind.

There aren’t enough pillows to beat or walls to kick or doors to slam or words to curse what seems at times infinite frustration, sorrow and regret.

There aren’t enough hours to pass—to sufficiently forget—from one niggling day until the next, and not enough words exist to keep asking for forgiveness.

There aren’t enough flowers to pluck and quench only to see them wither and drop petal by silken petal into an exquisite death as beautiful as their dawning.

There aren’t enough moments of peace and calm and hope where bright droplets cling like opals or tears or mercury—or the child I never had—to quivering limbs, but which gravity lures into dark reflecting pools.

There aren’t enough winds to whisk away the worries, to peel back bark as coarse as these thoughts, to strip aside layer upon layer of this callused soul until I am lying naked in a silent bed of moss, which is where I’d like to sometimes be.

But there are enough tears, enough smiles, enough grasps, enough pain from enough love, because it hurts, you know, it hurts.

sunday snapshots