what to do?

I'm at a loss. Not sure what to do to lessen Calvin's seizures. It's not that they're raging off the charts, at least not for him; relatively speaking they are holding at about the same number that he's had the past several years, which is about five or six grand mals per month plus a smattering of focal ones. But because of them he's missing too much school. Since starting in September, he has been absent for a total of nearly four weeks. So the status quo is not sustainable. I have to change something, but what? I do not know.

I can't decide whether I should increase his CBD oil or remove it for a spell. I don't know whether to replace it with a plant-based pharmaceutical version of it called Epidiolex. I'm not sure whether my latest batch of homemade THCA oil is as effective as the last one, or if I'm giving him too much, too little. I'm loathe to try any other traditional pharmaceuticals since, having already failed ten of them, the chance Calvin will respond to subsequent ones is minute, i.e. less than five percent.

I wish I had a crystal ball that could tell me what to do.

Thankfully, Calvin has been much easier to care for these days. He's been calm, cuddly and compliant—opposite of the way he was when he was drugged up on high doses of three powerful pharmaceuticals which suppressed, though did not stop, his seizures. Nowadays, keeping him home from school in itself is not as much of hardship as it used to be, it's just happening too often and it means I can't get much of anything done—can't read, can't write, can't walk Smellie, can't exercise, can't grocery shop, can't do chores.

Today will be Calvin's first, hopefully full, day of school this week. He's not even halfway through the month and he's already had four grand mals and at least two focal seizures. Something has got to give. I just don't know what that something is.

Photo by Michael Kolster

grief and loss, gratitude and love

As I filled out the lengthy adaptive skills' assessment, it was hard not to tumble into despair, clear that my son, who entered high school this year, cannot perform the simplest tasks that most infants and toddlers can do. When answering in the negative to five consecutive questions regarding various abilities, the instructions prompted me to skip forward to each subsequent section. The survey, which was supposed to take about ninety minutes to complete, took me no more than a quarter hour.

My fifteen-year-old cannot feed himself with a spoon. He can't dress himself, bathe himself, wash his hands, brush his hair. He can't put on his shoes, much less tie them. He can't grasp a marker or crayon to scrawl. He can't catch an object or give me one when asked to. He can't match shapes or colors, can't build blocks, can't speak any words. He can't run, can't play peekaboo, isn't toilet trained, can't open most doors. He can't get into or out of his bed on his own or pull up his duvet when he gets uncovered.

This sweet, handsome child of mine, though loved beyond measure, is a daily reminder of the grief I felt for years, beginning just before his birth when we first learned something was terribly wrong with him, and the loss I've felt ever since. Though he is alive and in ways vibrant, plus cute, loving and affectionate, he will never bring us the kinds of joys we thought parenthood had in store. To add insult to injury, we won't experience the bonus of being grandparents either.

From one perspective, having a child like Calvin represents to me an immeasurable loss, and at times I wince hearing and seeing the myriad of activities in which other kids and their parents regularly delight. But perhaps some of the joys that accompany a child's mastery in sports or academics or art or judgement or even virtue are in ways narcissistic ones and, perhaps, as a friend related after having read my post principles, those kinds of inclinations may not be ones parents are necessarily or ultimately in control of or responsible for.

Having said that, I still grieve the loss of a child who is still alive, in that my child is not healthy or very able to engage in most activities. However, I feel utterly grateful for what Calvin gives me. He still wants to be held like a baby. He sits in our laps and smiles when we lavish him with kisses and tickles. He chirps and coos at night when I reposition and cover him. On most days he greets me with a big grin when I help him get off the bus. He holds my hand in the grocer, making a beeline to the meat-department cases (his preferred place to camp out in the store) and smiles broadly when I hug him and say, "this is your favorite place, isn't it?" and then wipe the drool from his chin.

What's more, I feel abundant gratitude for the things that being Calvin's parent has brought to us—new and interesting friends, knowledge of a broader world, deeper self-reflection, insight, compassion, courage and empathy, profound feelings of despair and happiness (yes, we embrace both), and rare, intense experiences. As a result, I'm thankfully a different person from the one I used to be—I challenge authority instead of bowing to it, I question everything I used to take at face value, I'm more forgiving of myself and others, I'm more forthright and assertive and, I hope, more accepting of others and of what I can't control, and I'm not bothered if, in my advocacy for Calvin, some people don't like me.

And so though Calvin will likely remain much the way he was when he was a toddler, and though knowing that will sometimes get me feeling down, I feel fortunate to have this extraordinary boy as my son. He's one in a million, to be sure. A child to be celebrated and loved.

a man and his family

There once was a man who loved birds, especially chickens, and goats and fish and his lovely wife ...

Please click here and expand the Blurb image to page through the picture book and read more ...

A Man and His Family

smellie

I don't often write about Smellie—aka Nellie, Smellers, Killer—beyond mentioning that I take her for long walks at the college athletic fields near our home. But I really should gas on about her more than I do. She brings us much needed joy and levity and, like Calvin, loves us unconditionally, something most of us in this world could use more.

Smellie, who doubles as a Muppet, makes us laugh. When she runs, her ears flop up and down like a bird taking flight. She resembles a lion when she stalks certain prey. She loves to be underfoot, insisting on forever positioning her head beneath our hands in order to be pet, and loiters anywhere that bits of food might drop. With her muzzle in our laps, she pokes our arms like a dolphin in attempts to be caressed, and nearly crawls out of her skin when we stop. With huge brown eyes that kind of remind me of my mother's, she gazes at me like a daughter.

Our pooch, a seventy-plus pound eight-year-old, is ridiculously soft, fluffy and adorable. She isn't much interested in other dogs and is indifferent to strangers when sniffing for scraps of food or licking up vomit left by last night's drunken students. She rolls in bird shit, eats deer scat, and pounces in the muddiest puddles. Once, she devoured a baby bird after dislodging it from its nest. Another time she caught a chipmunk, and just once, a squirrel, violently shaking them until their necks snapped, then dropping them to the ground where their lifeless bodies unfurled (sigh).

As for how Calvin and Smellie get along, well, they mostly ignore each other, neither getting from the other exactly what they want. Calvin doesn't feed Smellie save the crumbs that inevitably drop from his place at the table, and he doesn't touch her unless she is sitting next to him in the car. Smellie doesn't give him kisses or want him to pet her. She steers clear of his path rather than get trampled. Each of them would probably prefer our undivided attention as only children.

Mostly, Smellie's a wonderful companion who gets me outside for exercise come rain or come sub-freezing temps, snow and ice and wind when I'd otherwise be hunkering down indoors. When we play hide and seek, she finds me every time. She follows me everywhere I go. She's gentle, loyal, sweet, and attentive. She mostly comes when she's called, and never wanders, even when alone in our unfenced yard.

We love you, Smellie. How lucky we are to have found you when we did. Please stick around a bit longer.

dragon moms

We hear our children shriek and see them seize. We hold them in their suffering, dab lavender on their wrists and feet. We dread and loathe their cries and moans, regret their frequent misery.

We lug their gangly, growing bodies, change their dirty diapers, wipe and salve their seats. As if infants, we watch them in their slumber. We lay our palms against their chests to feel them breathe. We bathe and dry and dress their fragile, flailing frames. Lamentably, we feed them endless medicines. Readily, we stroke and kiss their cheeks.

We cut their food into bite-sized bits and dole it out piece by piece. We feed them by the spoonful though they're toddlers, tweens and teens. We wash their hair, wipe their chins, brush their teeth. We thwart their falls and hold their hands to keep them on their feet. They may be always in our keep.

These kids of ours have made us into Dragon Moms, in great part because they cannot speak. We become their voice, translate their sounds and moods and movements, foresee and understand their wants and needs. On their behalf we challenge, question, crusade, condemn, critique. Protect their vulnerability. Despite our candor, others still neglect our pleas. We are sometimes seen as monsters—feared, maligned, too often misconceived. No doubt to some we're nuisances, hysterics, freaks. We're merely fierce champions of our uncommon offspring. Come walk in our shoes. Please see our rocky path. Please feel our aching feet.

We Dragon Moms—though not our wish—a rare, formidable breed.

Photo by Michael Kolster

on survival

On Saturday, I read an op-ed by a woman who had a third-trimester abortion. So many of the details she shared reminded me of my own pregnancy with Calvin—the fetal MRI, the countless ultrasounds, the wretched diagnosis, the empty spaces where brain matter was supposed to have formed but didn't. Just as the author experienced, a neurologist explained to me and Michael that Calvin would likely face developmental delays, might not crawl, walk or talk. What the doctor failed to mention, however, was that Calvin might be prone to having seizures.

I ruminated on the piece all weekend, even mentioning it to someone close to me. She asked me tenderly if, when I first knew of Calvin's brain abnormality, I ever considered having an abortion. She asked me, had I known of Calvin's troubles earlier in my pregnancy, if I would have had an abortion. She asked me, considering his seizures, insurmountable challenges and suffering, if I ever wished he hadn't survived. 

I did not consider having an abortion when I learned of Calvin's brain anomaly; my pregnancy was thirty-two weeks along. The thought never entered my mind, and no physician broached the topic. Had I known about Calvin's brain malformation earlier in my pregnancy, would I have had an abortion? I can't say for sure. Probably not. There were too many questions left unanswered for this optimist. As for my friend's third question about Calvin's survival, for weeks our boy struggled for his life. We were always pulling for him. He's here today. We love him. He's changed us in myriad ways. The kid has always been a fighter. Perhaps he teaches us about survival.

Having said that, in my very darkest most sleep-deprived hours, I do think about Calvin's mortality, sometimes even longing for deliverance for our child from his suffering, and from our strenuous, limiting, painful situation. I also worry about what will happen to him if he outlives us. Will people love and care for him? Will they keep him safe from harm? Will they be patient? Kind? Attentive? Tender? I think about how much easier life would be without having to take care of him—the constant vigil, the endless dirty diapers, the daily undertakings of a growing child who can do nothing without extraordinary help from others, the sleepless nights, the stress, the worry, the physical and emotional strain so taxing on my person. Then I imagine the enormous void he'd leave in my life, and I wonder, in that case, about my own survival.

principles

If Calvin were a typical child, I'd spend my days instilling him with these principles:

be kind. be honest. be forthright. show interest in those different from yourself. admit fault. be forgiving. be generous. be humble. hold onto hope. be curious. be grateful. be unassuming. take risks. be trusting with a modicum of caution. be accountable. be trustworthy. avoid making assumptions and jumping to conclusions. be courageous. be supportive and advocate for others. be empathetic. challenge authority. be charitable. be loving. celebrate diversity. be fearless. forge new paths. be productive. take time to relax. be patient. be tender.

I am acutely conscious of and lament the fact that Calvin won't grow up to express these principles as a teacher, doctor, philanthropist, climate activist, immigrant advocate, social justice champion, scientist, inventor, artist, author, or parent like many of my friends' children are no doubt considering. But as I write these words, I realize that Calvin in his own way exudes many of these virtues. Maybe they're written into his DNA. Perhaps he has garnered some of these ideals through our parenting, despite the fact I fail miserably at demonstrating some of them.

But Calvin is not a typical child. I like to think of him as extraordiary, a boy who daily shows his penchant for unconditional love, which might be the most-prized principle of them all.

Photo by Michael Kolster