day three

The blue light of dawn crept behind the blinds as I cradled my shivering child. I heard the chirp and caw of cardinals, jays and crows, while my little bird was silent in the wake of a grand mal.

On day three since his last grand mal, it is eighty degrees. Some leaves wilt in the heat while others thrive in the shade of trees. The house is quiet and cool, the open windows allowing a slight breeze.

I feel weary, having woken before dawn several days this week. With this kid, I never seem to catch up on sleep. Calvin has not been himself and I wonder, as always, if it is virus, infection or benzodiazepine malaise. The boy is listless, and I hope there is nothing festering under the cast that is on his leg.

His breath smells sour, his fingers too; he fishes them around in his mouth and they get covered in drool. Black circles linger under his eyes. He has a temp of one-hundred degrees, which might be due to withdrawal.

We’re at least a year away from his last dose of clobazam, the addictive benzodiazepine we’ve been weaning for over two. If we decrease too abruptly or too fast, he suffers worse affects, as do we. So we take his wean slow and, if possible, steady. It won’t be until he is completely of the stuff—free and clear for several months—before we’ll know if the side effects will abate, before we know if he’ll suffer fewer seizures. For now, he’s in an active state of withdrawal which will last, in total, over three long years.

reunions

Just a very quick post—I haven't much time this week to write—to mention that my brother, Scott, came for a visit from his home in Tucson by way of New York. His stay in Maine overlapped with the Kolster family reunion. He fit in well with the crowd, drinking beers and shooting the shit with my in-laws, cracking jokes with the gang.

His visit was too short; four days go by far too quickly. The last time I’d seen him was over eighteen months ago, nearly a year before Mom died. We talked about her and what a long and happy life she had lived, even with the Alzheimer’s. Over the few days we had together, we discussed life, triumph, guilt, remorse, responsibility and loss. We reminisced about childhood a bit, but mostly touched on a myriad of other topics such as relationships, the universe, and other things of non-political nature; Scott insisted politics was off limits.

Though Calvin has only met my brother a few brief times before, he took to Scott immediately. I think Calvin likes his scratchy head and deep voice, not to mention Scott’s fondness for hugs. I melted seeing them snuggle together, big smiles on their faces just chilling out.

When I dropped Scott off at the airport this morning I wept. Now that Mom is gone, I wonder if we’ll see much of each other. Our family has not been one for reunions; too many deep rifts between certain siblings. The last reunion we had was over twenty years ago when my dad turned seventy, the year before he died. It was pretty much a disaster, complete with harsh words and judgement, impatience, tears.

But what I’ve lost in one family I’ve gained in another: Michael’s. Scott reminded me of that same dynamic when I openly lamented the deep loss I feel daily having a child so seriously impaired as Calvin; he’s also been a gift.

As I look at the photo below I am reminded again of what my parents told me growing up, that Scott, as a six-year old, used to change my dirty diapers and feed me my bottle. It's no wonder he makes an amazing uncle.

another milestone

If you are wondering why I am not writing much lately it is because, a) Calvin was home from school for three weeks without a nurse to give me a break, b) Calvin has a broken foot, making it slightly more difficult to care for him than usual, c) I’ve been deep in thought and lamenting the ongoing rash of African Americans shot by police and the subsequent sniper killings of five officers in Dallas, d) Michael’s family is starting to arrive for a reunion here in Maine, and e) though Calvin began a brief session of summer school on Monday, it only lasts three hours a day four days a week; he’s home by 11:30 a.m. leaving me little time to get much done.

But since I’ve found a sliver of a moment while Calvin plays happily in his bed (safety netting secure overhead so he doesn't fall out and break his other foot), I can tell you about his most recent milestone: We took Calvin out to dinner for, essentially, the first time in his life. I say, “essentially” because when he was an infant, a few times we took him to dinner in his carrier and rested him at our feet. But he has never sat at a table with us in a restaurant for dinner. For a number of reasons—Calvin’s erratic behavior, his seizures, the drug side effects, his inability to sit safely in a chair, his early bedtime—it’s a luxury we’ve been hesitant to indulge.

Yesterday, Michael and I ventured to Sebasco Estates, a local seaside golf resort where his parents are staying in a tiny cottage for a few days before the reunion formally begins. We lounged on a sloping lawn for an hour or so eating crackers and cheese while Calvin mostly amused himself with random toys to bite and chew. When he became restless, we decided to give dinner a try. We figured, if he had a meltdown, we could always take our food in doggie bags. I reasoned that if we didn’t risk giving dinner a go, I’d be limiting my already meager opportunities to get out into the world.

We sat in the outdoor patio area facing the sea. Wind whipped our hair and sun stroked our necks. Calvin sat patiently in a grownup chair at the corner of our table eating the food I’d prepared for the jaunt. The four of us talked politics while sipping from cold beer and bourbon on ice. We managed to finish our meals while Calvin, by then in the upright adaptive stroller we’d borrowed from friends, sat mostly content.

Finally, we got up to leave, gathered Nellie who’d been penned up in the cottage, and said our goodbyes. We were home by 6:45 p.m. in time for Calvin’s evening meds and cannabis oils.

I felt proud, like we’d accomplished a great thing: We had stepped outside of our comfort zone, a zone in which remaining can be a dangerous thing.

hanging with The Fam at Sebasco Estates, photo by Michael Kolster

to be colorblind

When I study The New Yorker cover, I feel hope, but mostly pain. Tears well in my eyes seeing the image of a handsome family, the littlest sitting atop his father’s shoulders. Their brown bodies are clad for the beach, standing closely in the sand with a crisp blue backdrop of sky. Three children gaze out to sea. Dad seems somehow intent on the viewer, like a papa bird minding his chicks. Despite the flawless sky, clouds pool in his dark glasses. His strong body emerges from red, white and blue trunks laced tightly at his waist, bars of blue crossing his hips.

White folks in the distance have their backs turned.

I clutch my son and caress his belly, keenly aware of my privilege. I grieve the recent killings of decent black men. I grieve for my American sisters—mothers of brown and black children who’ve been gunned down so violently, needlessly, brazenly, mothers who have been robbed of the embrace of their child, of the chance to see them one last time, while I hold mine with impunity.

I am not colorblind. I see their beautiful hues. Far different from mine, they move me—everything about them: their history, their strength, their humility, their tenacity, their courage, their wisdom, their stamina, their love, their calm, their rage. I bear witness to their murders. The blood and pain in countless videos stains a nation already steeped in too many egregious deeds.

My son seizes weekly, his crooked arms stiff and shaking above his head. His father and I hold him, kiss him, whisper loving words that we hope somehow he can hear. Alton Sterling was shot in the chest by a blue-uniformed stranger. His body cramped, his arm rising in that same arced tremor while he lay—alone—expiring on hard cement.

Through my tears, I ponder those—and there are many—who like to declare their colorblindness, or who deny that racism exists, who resent, misinterpret and discount the claim that black lives matter, who blunt and derail the conversation by stating the obvious, that all lives matter, who resort to scapegoating rather than addressing the epidemic of violence and oppression against our nation's precious, darker skins. I ponder how one justifies an act of murder—of execution—yet condemns the act of driving with a broken tail light or of selling loose cigarettes or questioning authority or waving a toy gun or wearing a hoodie or standing up for civil rights or fighting for life? Too often it comes down to the color of their skin, and to some that means the victims, who they insist are culpable, are somehow fair game for shooting at point-blank range.

Is that what it means to be colorblind?

What if we were to imagine our children being choked to death or beaten by police or bleeding out in the middle of the street or a passenger or driver’s seat? I wager colorblindness doesn’t allow for minds to travel to that kind of place. It’s unsafe territory for the willfully blind, for cowards, for racists.

Perhaps this apathy and reproof stem from some lack of capacity, or perhaps from mere satisfaction of wallowing in the comforts afforded by white privilege braced by erroneous and harmful notions about minorities, which fill sorry voids of dark-skinned comrades. Perhaps, in that void bubbles blame, hatred, fear and contempt. I see the vile memes, read and hear the same old lame retorts, the hard edge of prejudice pressing through the fear of conceding that skin color in this nation has consequences, has privilege, has meaning.

Kadir Nelson, A Day at the Beach

on the mend

Thankfully, my boy is on the mend. Tuesday morning we saw Calvin's awesome orthopedic specialist who put him in a sleek green fiberglass cast that he can bear weight on, complete with a simple cast shoe. Turns out that the metatarsal fracture, a straight, green break like that of a sapling, will heal in just three weeks because it is unlikely to shift position and it extends into the growth plate. This was the best news we could have asked for.

Today, Calvin is recovering from yesterday's grand mal yet still enduring several partial seizures in its wake. The kid just can't seem to catch a break, except when he falls out of bed and lands right on his toe.

independence day break

Yesterday afternoon while he was playing with his toys, Calvin fell out of his safety bed and fractured his metatarsal, the foot bone that leads to the big toe. The break is more serious because it extends into his growth plate and, we were told by a physician's assistant, it could affect the development of his foot. We spent the good part of two hours this morning having it examined, x-rayed and imobilized in a fiberglass splint wrapped with ace bandages. The physician's assistant told us that Calvin would likely have to keep weight off of it for four to six weeks. That means we'll be spending much of our time thwarting his attempts at standing up, which is already proving to be difficult since all Calvin wants to do—all he really can do—is walk around the house, out in the yard, down the street and up and down stairs. Likely due to drug side effects and their withdrawal, he's not accustomed to sitting still ... ever.

I'm not yet sure how we'll be able to manage doing things like giving him a bath, but maybe after we meet with the orthopedic surgeon later this week we'll get a better idea and, perhaps, a better solution. And since Calvin isn't capable of using crutches, any walking is out of the question. Therefore, we'll be lifting and carrying him everywhere, and using a stroller a lot more than he'd like.

I feel guilty for not pulling the safety netting over his bed. Of late, I've kept the netting down more often, in part because it is so cumbersome but mostly because Calvin has seemed more aware of the danger of standing up in bed. I was wrong.

If I sound unfazed, it is only because of the blog platform. I'm in utter despair and spent much of today in tears. Michael tried to dry them and assuage my guilt. Woody and Lauren validated them. Luke and Sarah wooed them away with their boundless empathy, love and kindness. It is hard to shake the funk, however, when a child so chronically disabled who has to deal with seizures, drug side effects, withdrawal and poor digestion also has to deal with a broken foot. To make matters worse, he likely has no idea why he can't stand up and go where he wants to go. I'm heartsick.

I'm trying to tell myself that we will adjust. But it's hard to swallow just how significantly this will no doubt negatively impact what little independence Calvin and I both had when he could walk.

venturing out

I grab my boy, nearly sixty pounds of slackish weight, duck into the car and hoist him onto a booster in the middle of the back seat (where it is more difficult for him to stare at the sun out a side window). Lifting him should be harder than it is, but the past twelve years of doing so has strengthened my muscles and bones, though not my countenance.

In the wake of Tuesday’s grand mal, he’s teetered on the verge of seizing again, perhaps even experiencing imperceptible and transient events, like when his lips turn pale and he spaces out a bit, or when he unravels into a manic attack. It’s impossible to know, really, if these are seizures or if they are some vestige of active benzodiazepine withdrawal; either way, they concern me enough to hesitate venturing out with him.

But we can’t spend this entire three-week stint between the end of school and the beginning of the abbreviated summer session indoors. We have no nurse and Michael is hard as ever at work (yes, he is immersed in all things related to his photography, especially when he doesn't have to teach).

So, every day I’ve been taking Calvin grocery shopping, first, to the big store, which he is used to, then to the little store, which he is not. Every time we approach the little store, with its narrow aisles, different smell and unfamiliarity, Calvin has a melt down. It can happen in the parking lot, in the foyer or in the aisle. He gets so upset his face turns bright red, he cries and scratches at me to leave or to pick him up.

When the tantrums hit—and I’ve no idea if they are some sort of visceral reaction, fierce anxiety or simple stubbornness—I must resign myself to waiting until they pass. I lean down and embrace him tightly as onlookers gawk or sneer, clearly wondering what the hell is wrong with me and my kid.

Yesterday, an elderly woman with a tiny cart looked at us forlornly and said, “It’s so hard.” She asked if there was something she could do or if she was in our way. I shook my head as Calvin's tantrum waned and I was able to lead him to the kombucha shelf. As we walked past, I thanked her.

“Your kind reaction is very rare,” I said, looking intently into her eyes, then added, with a thickening throat and a slightly trembling voice, “I appreciate it very much.”

“He’s such a sweet child,” she said.

It seems our outings might be improving slowly, which is the point of returning to the same places; Calvin does better with familiarity.

Today, he is very slightly better, albeit still showing signs of an impending seizure though it is only day four since the last. Even so, I'm going to load him in the car and see if we can survive another grocery trip.

Calvin having one of his manic fits, photo by Michael Kolster