2.27.2015

favorite things

coffee. melting snow. woodstove fires. tulips. showers. green. watching nellie run in the snow. candles. wine. drop-ins. girlfriends. rye (who knew?) gratitude. husbands: mine and, likely, yours. the tick of a clock. calvin's smiles. down jackets and quilted pants. compassion. seizure-free days. cheese. healing cannabis. writing. longer days. mint ice cream. saddling up to a bar. clean hair. sunshine. train whistles. milk. dinner guests. quiet. a good dirty joke. a good clean joke. michael's salmon and soba. charity. memories of my folks. books. hand knit hats. sleep. the promise of spring. imagining the garden in bloom. toothpicks. banter. eggs and toast.

2.25.2015

spring fever

It got up to about thirty degrees today after having been minus twenty-one yesterday before dawn. There was a breeze, but it felt warm compared with the sub-zero wind chills we've had of late due to fierce northwestern gales. In my light puffy jacket and quilted pants I broke a sweat walking Nellie at the fields, the snow still deep in places impeding an easy gait.

As usual, Nellie was serious about having some fun siting squirrels, plowing through drifts up to her chest and scooping up snow to eat while on the fly. She's fun to watch though I wished I could have had Calvin at my side, but we have yet to find boots he can walk in and even then he'd have a hard time on the ice and uneven ground.

I've got some serious spring fever, hoping that the sidewalks will soon melt so I can take Calvin outside. It's been months. We'll walk down to Woody's and maybe to the fields if he's up for it. I hope the drifts and banks as high as my head will dissolve before April to reveal the purple crocuses of spring and everything else green that has been cloaked in snow and having kept us locked inside for so long.

2.23.2015

first time

I remember clearly the first time Calvin had a seizure. He was eighteen months old. Still a tiny thing, he had just begun learning how to crawl and had just said Mama for the first time; little did I know, it would be the last. He’d woken up from a nap listless and feverish, so I’d given him some acetaminophen. It was a Sunday and while Michael laid on the futon with our boy I called the hospital and spoke to the pediatrician on duty.
  
“My one-year-old has a temp of 102.6, is there something I should do or be concerned about?” I asked.

The doctor told me, no, that children can endure much higher temps than adults, as high as 106 degrees without other complications.

“Even though my son is developmentally delayed and has a brain malformation?” I asked.

He reassured me that there was nothing to worry about, and though his answer didn’t sit well with me, there was nothing more I could do but hope that Calvin’s fever would subside. Seconds after hanging up, just when Calvin gave us a smile making me think he might be feeling better, he suddenly stiffened and choked, his eyes bulging then receding in their sockets, then his body began to convulse. Though I’d never seen one, I knew it was a seizure. Frantically, I dialed 911 and spoke to the operator as Michael instinctively swung Calvin back and forth in his arms, a human timepiece ticking off the warped seconds, our child his swaying pendulum. Almost immediately, Calvin’s lips began fading to blue, his skin growing ghostly yet blooming feverish patches on his cheeks. We were terrified, and for four minutes our little boy twitched like a bug in Michael’s arms. From the upstairs room I heard the ambulance approach, saw it pull up and watched the medics bail out with their boxes of lifesaving equipment. Minutes later, we were riding in the back of the ambulance headed to the emergency room, parting traffic and sailing through lighted beacons. A sick, uneasy feeling rose in my gut remembering the time, just eighteen months prior, when I’d taken the same route with Michael after my water had broken and before our lives were turned upside down.

We learned that Calvin’s seizure was febrile, that he had had a urinary tract infection causing the fever which had triggered the seizure. Six weeks later it happened again. Same reason. Same trigger. Same panic and fear. So, on Halloween, when Calvin was twenty-months old, we had him circumcised to prevent further infections. Seeing him struggle under the anesthetist’s mask gave me chills and I remember being thankful that I’d never seen him intubated in the hours after his birth. Days after the circumcision, Calvin cried in a tub shallowly filled with warm water while I peeled bloody gauze from his penis. I wasn’t sure which was worse, seeing my baby hurt or seeing him seize. Either way, I felt helpless.

Calvin at eighteen months with a younger friend, August 2005

2.21.2015

truth in numbers

I've been thinking a lot lately about the course of events in Calvin's life and putting them down, bit by bit, in a memoir. Yesterday, I began writing about Calvin's first seizure—the first one we knew of—when he was just eighteen months old and shortly after he said Mama for the first and the last time. Out of curiosity, I requested his immunization records which I got in the mail today. On August 19th of 2005, he receive his DTaP immunization, which would have been right around the time of his first seizure. I need to contact the hospital to see which came first.

One of Calvin's health care specialists, in helping me gather some of this info, said this to me:

Just because I am a numbers person, I thought you might be equally intrigued: Calvin's chart is 1,083 pages long, each page representing a consult note, office visit, physical exam, phone call, lab result, or MRI. He has been to our office 171 times and we have notes from 240 separate specialist visits. With Calvin just hitting his 11th year, this means he has spent 10% of his days seeing a medical provider. These stats just remind me of how hard you work to take care of him. I know we, at our office, appreciate your efforts; I hope others do the same.

Seeing these kind of numbers stunned me. No wonder I am so tired, I thought, and I realize that Calvin probably very easily spent thrice as much time seeing medical providers in the first several years of his life.

The numbers are dizzying—the milliliters and milligrams and seizures and minutes and temperatures doctors and nurses and appointments and sleepless nights and wake-up times and suppositories and diapers and drugs and doses and days between seizures. They get me down and yet there's truth in them and perhaps they can teach me something and for sure they act as reminders and markers validating a life—a hardship—saying, Calvin was here, we did this and, although it was shitty, somehow we persevered.

Calvin, still in the hospital, when he was five weeks old. Photo by Michael Kolster

2.20.2015

dad up ahead

If Dad were alive he’d be turning 90 today, but we lost him to bone marrow cancer when he was just seventy and I was thirty-two. I often wonder what he’d think of me now and what he’d make of Calvin. I have no doubt that he and Michael would hit it off and that he'd be a good grandfather to Calvin, loving him for who he is and wanting nothing more than to tickle him and simply be with him. I think he’d be proud of what I’d accomplished so far in life: that I’d realized my childhood dream of being a clothing designer; that I’d become financially independent before getting married; that I’d married a good guy, a solid guy, a smart guy, an honest guy, a responsible guy, a good citizen and one who loves me (all in one guy, mind you); that I'm using my mind in a creative and worthy endeavor such as writing.

In honor of my dad who was a Naval Academy graduate, a hero who saved lives in a terrible airfield accident, a track and field star (he ran hurdles, threw the javelin for the Navy and, in 1948, ran a mile in 4:28) an engineer, a coach, a father, a friend, a husband, a prankster, a swim meet official, a mechanic, a sunbather, an avid gardener, a canner and a clammer, here is a remembrance which is part of my memoir-in-work:

I trudge up onto a grey morning beach, wind plaiting my hair, damp sneakers chafing my ankles and Dad up ahead leading the way across the sandbar. He carries a shovel in one hand and a swinging white bucket in the other. Hip waders the color of clay hang from suspenders off of his broad shoulders, a gossamer white t-shirt clinging to his chest trembles in the wind. He is Neptune and I am his little green urchin. As we pound our feet on the wet sand, water spurts from tiny holes. Dad kneels down and works hard and fast digging scores of pits and forming small, sloppy mounds of sand to their sides. At each site, he reaches elbow-deep into the hollows as waves wash over the bar dissolving the mounds and dumping sand into the space around his arm and into my sneakers. “Got it,” he says with a grunt, then works his muscles against the sand vacuum slowly tugging the clam to the surface. It’s long and thin, shiny and green-gold, the color of seaweed, its edge as sharp as the razor for which it is named. This time he hands the clam over to me for inspection and suddenly, with a phony growl, he squeezes it so that it spits at me and I flinch. We both laugh then he gestures and says, “Climb up, Shorty.” My ankles are sore and raw, my feet numb and wet and I’m shivering so much my teeth are chattering. With one arm under my leg, the other carrying the shovel and a bucket half full of clams, he carries me up the beach through tall grasses over ivory dunes, my hands clasped loosely around his neck riding his back like a monkey on a stallion. Through my rolled-up Levi’s and nubby sweater I feel the damp warmth radiate off of his back into my birdlike chest and I think to myself, I have the best dad in the world.

Donald Murray Shake, February 20, 1925 - January 16, 1996

2.18.2015

consolations

I didn't want to believe it, but the day after Calvin woke at 4:00 a.m. to a seizure he already showed signs of an impending one: hot red ears, whining, rashy chin, finger snapping, dropping down, seizure breath, flailing and screeching, bloody nose, stubborn, strange laughter. Unfortunately, I was right, and his seizure scream woke me this morning, again at 4:00 a.m.

It was a febrile seizure, his rectal temp of 101.4 degrees slightly higher than one he'd had yesterday afternoon. In the wake of the six-minute convulsive seizure, I stripped him down to his t-shirt and diaper, gave him acetaminophen for the fever and gave him extra cannabis oil from a syringe I'd prepared yesterday expecting I might need it even though it was only day two. Calvin fell asleep fairly quickly, which was a good omen, though he shuddered and shook for the good part of an hour in what we call post-ictal aftershocks.

The fact that it was a febrile seizure is a consolation of sorts, that there was an obvious trigger: an illness. But I'm still vexed by this recent spate of seizures and dreading another trip to the emergency room. I must keep in mind that for the past five-and-a-half months Calvin has not had a daytime tonic-clonic (grand mal) seizure. For now, he suffers them only while he is asleep.

Perhaps the fact that my eleven-year-old boy is growing like a weed, and is likely experiencing concomitant hormone changes, is contributing to the stress on his body that can trigger seizures. So, this Friday I'll be driving up to our dispensary to pick up some flower for my seventh batch of THCA oil plus a batch of CBD oil that is more concentrated than the one we are using and therefore easier to administer at higher doses. Currently, Calvin is taking in twelve milligrams of CBD per day which is only about 0.5 mgs per kilogram of his weight. Some children are taking as much as 2.5 mgs CBD per pound of their weight, so Calvin has much room to move if need be, which is another consolation.

A week ago, Calvin had seemed to have recovered from his bout of status epilepticus which had put him in the ER for twelve hours having endured four emergency seizure medications in an effort to stop repeated seizures. Last Thursday he seemed to be feeling good enough to go bowling with his ed-tech, Mary. I went and watched and snapped a few shots to show Michael, catching a smile or two from our boy, which is the best consolation of all.