calvin's story
2.28.2015
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.
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.
“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.
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.
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.
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.
2.16.2015
bodies of water
Adrift with my boy in his boat of a bed, he shivers and shakes in the wake of his brain’s storm. We’ve kissed him and dripped cannabis oils between his parted lips hoping it'll calm the seas of the seventh day. I drape my wrist over his hip and feel his wicked twitches, keeping my eyes peeled and hoping his don’t open again to seize.
With my hand on him I fix to heal and calm, sending through my palm what my mind’s eye sees: bodies of water like glass.
Eyes closed, I glide across Pleasant Pond, wind smoothing back my hair, but then I remember its clear skies clouding into a storm and so I go, flowing back to Phantom Lake, deep and dark and serene, where a water ski below my feet slides in serpentine. Just down the hill my sleeping giant Sammamish rests, its faint ripples ironed by mist and then, amidst a desert of dry falls, Deep Lake's face is wreathed with blossoming clouds. Back in Maine, Quahog bay, like the creatures it keeps, is silent, sleek and green. And at last, a river of glass, Chelan, crystal clear and cool. I let these bodies of water flow through me into my sleeping son, whose shivers, I hope, are nearly done.
In the light, his cannabis oils glow golden, and I imagine the drops he drinks as a river of a thousand suns setting over the deep.
With my hand on him I fix to heal and calm, sending through my palm what my mind’s eye sees: bodies of water like glass.
Eyes closed, I glide across Pleasant Pond, wind smoothing back my hair, but then I remember its clear skies clouding into a storm and so I go, flowing back to Phantom Lake, deep and dark and serene, where a water ski below my feet slides in serpentine. Just down the hill my sleeping giant Sammamish rests, its faint ripples ironed by mist and then, amidst a desert of dry falls, Deep Lake's face is wreathed with blossoming clouds. Back in Maine, Quahog bay, like the creatures it keeps, is silent, sleek and green. And at last, a river of glass, Chelan, crystal clear and cool. I let these bodies of water flow through me into my sleeping son, whose shivers, I hope, are nearly done.
In the light, his cannabis oils glow golden, and I imagine the drops he drinks as a river of a thousand suns setting over the deep.
 |
| Qhahog Bay |
2.13.2015
walking in circles
is what we'll be doing tomorrow and Sunday while the effects of global warming create blizzard conditions again and dump another twelve to twenty-four inches of dizzying fallout on top of what is already five or six feet of the white stuff we've come to loathe: snow.
2.11.2015
strangers, friends and neighbors
Sunday night after a twelve hour stint in the emergency room, Calvin having endured repeated seizures plus four emergency medications—sedatives meant to quell the seizures—he suffered two more in bed at home. After the second one, neither of which were convulsive, I gave him some extra cannabis oil, mixing the THCA oil with the CBD oil. Thankfully, he didn’t have a third seizure.
All day long Monday and Tuesday Calvin was listless and spacey. I’d kept him home from school both days because he didn’t want to walk and, when he did, his balance was awful. At times he dropped to the floor from exhaustion, dizziness or confusion. The snow, which had again begun falling early Sunday morning, had not relented, laying down inch after inch all day Monday. As Calvin rested I managed to write of his ordeal and after posting it to this blog I received over one-hundred messages of love and concern from near and far, from loved ones, strangers, friends and neighbors. These are but a few:
Hey Doc, no words are adequate. Just thinking about Mr. C and sending him any karma that’s about. Best to you and MJK
Hoping that you are all resting comfortably back at home--and that you are enjoying a quiet cup of coffee this morning. Hugs.
I'll call you in a bit. I'm so sorry.
sending you love.
can i give you a piggy back ride, like ANYWHERE all day? i'll wear a special hat with straws sticking out of it--beverage of your choice. then i'll rest you down on a bed of roses and lavender. oh how i love you.
Hugs to you, Calvin and Michael. Any other words just fail me right now...
Oh No! Christy, I am so very sorry. My heart is aching for you. ANYTHING at all that you need, call us. xoxoxoxoxoxo
Please never hesitate to send me texts at the crack of dawn asking me to come get Nellie.
We are thinking about you all -- sending warm and hopeful thoughts your way. We'd love to help with dog care, snow blowing, whatever.
For whatever good it might do: we're thinking of you all, and wishing you all a more peaceful day.
There are no words for how much I hate this for all of you. Sending love. xxoo
Sending love and healing thoughts to you and your family always.
Christy, Calvin knows how much you love him. Stay strong my friend and don't forget to sleep when you can. Sending positive thoughts...
At four o’clock on Monday, my friend Teresa arrived with her daughter Elise and her friend Ellie. Though it was bitter—single digits with cutting winds—the three of them took Nellie out for a walk. Just before they left, Mary arrived with Nellie’s littermate, Gryff, to do the same. Several others had also offered to walk Nellie in the cold. Before everyone got out the door Lauren arrived with a birthday board book for Calvin, and she sat with me while I fed him an early dinner. Then, out of the corner of my eye I saw our neighbor, Brian, snow-blowing our driveway after a day’s worth of constant snow had erased any proof that Michael had cleared it that morning. Crying, I cracked open the door and gestured to Brian—the meaty rumble of the blower too loud for me to be heard—by putting my hand over my heart in gratitude. The look on his face told me that he ached for Calvin and for us and that he wished he could do more. Just as Brian was beginning to clear a path for the mailman I saw Vlad coming down the street plodding behind his blower. Brain handed it over to Vlad, who finished up the job. And when I was about as bowled over by love and affection as I could have been, DeWitt showed up with a dinner that Jane had just made—turkey chili with peppers and cornbread still warm from the oven. They even included a couple of beers.
Today is the first day of sunshine in a while and the first in several that I've been able to get out of the house. Without the wind, single digits this morning felt balmy. I took Nellie to the fields, thinking I could walk on the serpentine trails which skiers and snow-shoers had blazed before me, but I was wrong. In the center of a vast cloak of white, each step I took sunk nearly to the knee, my boots taking on snow until finally I foundered and fell on my ass. Standing up was nearly impossible since the snow gave way beneath my hands so I had to roll onto my knees and get up from there. The final fifty yards to the service road were the hardest and, panting and beginning to sweat, I had visions of folks who climb Everest and wondered why. Finally, with feet on solid ground, I felt triumphant. I thought about our miserable day in the emergency room, about the seizures, about the drugs, about the sleep deprivation, the worry, the fear, about the tense situation at home, and I realized, though it is hard, I'll get through it somehow, by myself or with the help of loved ones, strangers, friends and neighbors.
All day long Monday and Tuesday Calvin was listless and spacey. I’d kept him home from school both days because he didn’t want to walk and, when he did, his balance was awful. At times he dropped to the floor from exhaustion, dizziness or confusion. The snow, which had again begun falling early Sunday morning, had not relented, laying down inch after inch all day Monday. As Calvin rested I managed to write of his ordeal and after posting it to this blog I received over one-hundred messages of love and concern from near and far, from loved ones, strangers, friends and neighbors. These are but a few:
Hey Doc, no words are adequate. Just thinking about Mr. C and sending him any karma that’s about. Best to you and MJK
Hoping that you are all resting comfortably back at home--and that you are enjoying a quiet cup of coffee this morning. Hugs.
I'll call you in a bit. I'm so sorry.
sending you love.
can i give you a piggy back ride, like ANYWHERE all day? i'll wear a special hat with straws sticking out of it--beverage of your choice. then i'll rest you down on a bed of roses and lavender. oh how i love you.
Hugs to you, Calvin and Michael. Any other words just fail me right now...
Oh No! Christy, I am so very sorry. My heart is aching for you. ANYTHING at all that you need, call us. xoxoxoxoxoxo
Please never hesitate to send me texts at the crack of dawn asking me to come get Nellie.
We are thinking about you all -- sending warm and hopeful thoughts your way. We'd love to help with dog care, snow blowing, whatever.
For whatever good it might do: we're thinking of you all, and wishing you all a more peaceful day.
There are no words for how much I hate this for all of you. Sending love. xxoo
Sending love and healing thoughts to you and your family always.
Christy, Calvin knows how much you love him. Stay strong my friend and don't forget to sleep when you can. Sending positive thoughts...
At four o’clock on Monday, my friend Teresa arrived with her daughter Elise and her friend Ellie. Though it was bitter—single digits with cutting winds—the three of them took Nellie out for a walk. Just before they left, Mary arrived with Nellie’s littermate, Gryff, to do the same. Several others had also offered to walk Nellie in the cold. Before everyone got out the door Lauren arrived with a birthday board book for Calvin, and she sat with me while I fed him an early dinner. Then, out of the corner of my eye I saw our neighbor, Brian, snow-blowing our driveway after a day’s worth of constant snow had erased any proof that Michael had cleared it that morning. Crying, I cracked open the door and gestured to Brian—the meaty rumble of the blower too loud for me to be heard—by putting my hand over my heart in gratitude. The look on his face told me that he ached for Calvin and for us and that he wished he could do more. Just as Brian was beginning to clear a path for the mailman I saw Vlad coming down the street plodding behind his blower. Brain handed it over to Vlad, who finished up the job. And when I was about as bowled over by love and affection as I could have been, DeWitt showed up with a dinner that Jane had just made—turkey chili with peppers and cornbread still warm from the oven. They even included a couple of beers.
Today is the first day of sunshine in a while and the first in several that I've been able to get out of the house. Without the wind, single digits this morning felt balmy. I took Nellie to the fields, thinking I could walk on the serpentine trails which skiers and snow-shoers had blazed before me, but I was wrong. In the center of a vast cloak of white, each step I took sunk nearly to the knee, my boots taking on snow until finally I foundered and fell on my ass. Standing up was nearly impossible since the snow gave way beneath my hands so I had to roll onto my knees and get up from there. The final fifty yards to the service road were the hardest and, panting and beginning to sweat, I had visions of folks who climb Everest and wondered why. Finally, with feet on solid ground, I felt triumphant. I thought about our miserable day in the emergency room, about the seizures, about the drugs, about the sleep deprivation, the worry, the fear, about the tense situation at home, and I realized, though it is hard, I'll get through it somehow, by myself or with the help of loved ones, strangers, friends and neighbors.
 |
| before Sunday and Monday's snow storm |
2.09.2015
status
Yesterday, the day after celebrating our son’s birthday—eleven years and one day after riding in an ambulance through an ice storm to Maine Medical Center to undergo an emergency c-section six weeks before Calvin's due date—we found ourselves back in an ambulance, Calvin having suffered a series of difficult to control seizures called status epilepticus. We spent twelve hours there.
Status epilepticus is dangerous, because the longer a single seizure or series of seizures lasts the harder it is to stop them, and the patient risks a swollen brain and/or the shutting down of vital organs. At five a.m., after his third seizure at home and having given him extra cannabis oil after the first one, we gave Calvin rescue Diastat, aka rectal Valium. Rather than putting him to sleep it made him catatonic and we weren’t sure if it had stopped the seizure, so we resigned ourselves to call 911. It had been nearly eight years since the last time we’d had to, back when ambulances idling in front of our home were, regrettably, not uncommon.
Still dark and quiet outside, and as Michael carried our boy out to the ambulance through the falling snow, I gathered some of Calvin’s medicines, the cell phone, my jacket and hat. No time to brush my teeth, drink my coffee, put on underwear, feed the dog or let her out to pee. When I stepped inside, the back of the transport felt all too familiar with the exception that this time I was weeping over a growing boy rather than an infant or toddler. Still, the worry is the same, perhaps worse because this little person has woven his way into me like a bur in a blanket which, if plucked out, my life would no doubt unravel.
At the hosptial we were met by a young female doctor named Teri. We told her of Calvin’s history with seizures and she mentioned having a daughter with epilepsy. I could hardly believe it. In all these years of countless specialists, we have never had one to care for our son who knows, first hand, what it’s like to live with epilepsy. Teri was compassionate and kind, patient and empathetic. I knew we were in good hands, and when her shift ended, her husband Ranjiv, another ER doctor, replaced her. Both of them deferred to our better judgement as Calvin’s parents. Both of them spent considerable time talking with us and helping us make each painstaking decision because, to a great degree, both of them knew what it was like to be us.
For hours, as Calvin went in and out of what we think were complex partial seizures, some brief, others prolonged and with symptoms we'd never before witnessed such as strange growls and intense startle-responses, we discussed emergency meds. We first opted to try a dose of nasal Versed, a short-acting benzodiazepine, which made him sputter and cry and which didn’t seem to do much to stave off the serial of seizures. We watched and waited as Calvin seized then slept, seized then slept. Between fits I managed to give Calvin his noontime seizure meds and a late dose of his morning cannabis oils, but still the seizures stealthily and regularly pummeled him for hours.
Finally, after tries from three separate nurses, one of them successfully set an IV so we were able to give Calvin a bolus of fosphenytoin, however the seizures, though they calmed, did not relent. The sleep-seizure pattern repeated until four o’clock when we finally decided to try a second dose of Diastat with the hopes of returning home to monitor him rather than transferring to Maine Med which we were loathe to do. As I sunk my head into Calvin's neck while he slept, the sickeningly sweet smell of Valium seemed to seep through his pores and I realized, if he were to expire, I'd even miss his smell.
The last dose of Diastat, plus being hydrated after hours without fluids, seemed to stabilize Calvin's condition enough for us to take him home. Before leaving the ER we hypothesized with Ranjiv about why this was occurring. Was it an oncoming illness? Was it the smaller dose of clobazam? Was it sleep deprivation caused from the five straight days waking up around 3:15 a.m. and not going back to sleep? Was it that we hadn't increased Calvin's Keppra to account for his weight gain? Was it the cannabis? Is it that he is in the beginning stages of puberty? What my gut tells me is that we got a little bit greedy with the benzodiazepine wean and simply went too fast, reducing his remaining dose by twenty percent in the course of only three-and-a-half weeks. Or maybe it was just a perfect storm of everything.
Calvin is better today, though still a bit punch-drunk, so I remain on edge, never sure when the next jab or hook might send us to the ropes.
Status epilepticus is dangerous, because the longer a single seizure or series of seizures lasts the harder it is to stop them, and the patient risks a swollen brain and/or the shutting down of vital organs. At five a.m., after his third seizure at home and having given him extra cannabis oil after the first one, we gave Calvin rescue Diastat, aka rectal Valium. Rather than putting him to sleep it made him catatonic and we weren’t sure if it had stopped the seizure, so we resigned ourselves to call 911. It had been nearly eight years since the last time we’d had to, back when ambulances idling in front of our home were, regrettably, not uncommon.
Still dark and quiet outside, and as Michael carried our boy out to the ambulance through the falling snow, I gathered some of Calvin’s medicines, the cell phone, my jacket and hat. No time to brush my teeth, drink my coffee, put on underwear, feed the dog or let her out to pee. When I stepped inside, the back of the transport felt all too familiar with the exception that this time I was weeping over a growing boy rather than an infant or toddler. Still, the worry is the same, perhaps worse because this little person has woven his way into me like a bur in a blanket which, if plucked out, my life would no doubt unravel.
At the hosptial we were met by a young female doctor named Teri. We told her of Calvin’s history with seizures and she mentioned having a daughter with epilepsy. I could hardly believe it. In all these years of countless specialists, we have never had one to care for our son who knows, first hand, what it’s like to live with epilepsy. Teri was compassionate and kind, patient and empathetic. I knew we were in good hands, and when her shift ended, her husband Ranjiv, another ER doctor, replaced her. Both of them deferred to our better judgement as Calvin’s parents. Both of them spent considerable time talking with us and helping us make each painstaking decision because, to a great degree, both of them knew what it was like to be us.
For hours, as Calvin went in and out of what we think were complex partial seizures, some brief, others prolonged and with symptoms we'd never before witnessed such as strange growls and intense startle-responses, we discussed emergency meds. We first opted to try a dose of nasal Versed, a short-acting benzodiazepine, which made him sputter and cry and which didn’t seem to do much to stave off the serial of seizures. We watched and waited as Calvin seized then slept, seized then slept. Between fits I managed to give Calvin his noontime seizure meds and a late dose of his morning cannabis oils, but still the seizures stealthily and regularly pummeled him for hours.
Finally, after tries from three separate nurses, one of them successfully set an IV so we were able to give Calvin a bolus of fosphenytoin, however the seizures, though they calmed, did not relent. The sleep-seizure pattern repeated until four o’clock when we finally decided to try a second dose of Diastat with the hopes of returning home to monitor him rather than transferring to Maine Med which we were loathe to do. As I sunk my head into Calvin's neck while he slept, the sickeningly sweet smell of Valium seemed to seep through his pores and I realized, if he were to expire, I'd even miss his smell.
The last dose of Diastat, plus being hydrated after hours without fluids, seemed to stabilize Calvin's condition enough for us to take him home. Before leaving the ER we hypothesized with Ranjiv about why this was occurring. Was it an oncoming illness? Was it the smaller dose of clobazam? Was it sleep deprivation caused from the five straight days waking up around 3:15 a.m. and not going back to sleep? Was it that we hadn't increased Calvin's Keppra to account for his weight gain? Was it the cannabis? Is it that he is in the beginning stages of puberty? What my gut tells me is that we got a little bit greedy with the benzodiazepine wean and simply went too fast, reducing his remaining dose by twenty percent in the course of only three-and-a-half weeks. Or maybe it was just a perfect storm of everything.
Calvin is better today, though still a bit punch-drunk, so I remain on edge, never sure when the next jab or hook might send us to the ropes.
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| photo by Michael Kolster |
2.06.2015
slow like molasses
In the photograph below, which I love, Calvin is already two or three months old, maybe older, having not come home from the hospital until seven weeks after his birth, which was six weeks early. Tomorrow my boy turns eleven and I can't say—like most parents do—that the time has gone by quickly. But that's okay. Perhaps, in some very strange and upside down way, the oft monotonous raising of Calvin can work as a perk: it forces me to live in the moment and to be ever mindful. Life in general tends to feel as though it is fleeting. Calvin, and these long Maine winters, help keep it slow like molasses, and for that I am grateful.
Happy birthday, Baby. Keep on truckin'.
Happy birthday, Baby. Keep on truckin'.
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| photo by Michael Kolster |
2.04.2015
wired (video)
This is not my kid. I know, because before he "had" to start taking anticonvulsant pharmaceuticals he never acted like a lunatic. Of course he cried and fussed plenty, certainly more than most babies, but if memory serves he did not exhibit the kind of agitation you'll see in the video below, at least not until he took his first antiepileptic drug, Trileptal, when he was just two years old, which made him go absolutely berserk.
Since then, we've seen this same behavior while taking Keppra, Clobazam and Banzel. We've seen the opposite reaction—zombie kid—when he took Depakote, Lamictal, Clonazepam and Zonegran. If I were a believer, I'd be praying to God that this intermittent mania is reversible. I so desperately want my kid back.
If we're lucky, it won't be more than a few months until Calvin is completely off of his benzodiazepine, clobazam, aka Onfi. He's been taking it for four-and-a-half years and though at first it did a decent job of quelling his seizures, he quickly habituated to it and the seizures returned. Each time they returned we were encouraged to increase his dose and, little by little, it far surpassed what is considered a recommended therapeutic dose, especially for a child.
Calvin has suffered a host of side effects from taking clobazam, most notably dizziness, ataxia (uncoordinated movement and gait disturbances), insomnia, psychomotor hyperactivity, agitation and excessive drooling. I know it because now, at less than half of his highest dose, Calvin shows few signs of these except in the days following a decrease in dose when withdrawal symptoms appear. Unfortunately, these side effects are magnified during a withdrawal and can also include increased seizure activity and even hallucinations.
Thankfully, the two cannabis oils we've been giving Calvin—one high in THCA and one high in CBD—seem to ease the bad side effects of the drugs and their withdrawal while keeping the seizures manageable. With any luck, the cannabis oils will one day allow us to take Calvin off of his Keppra, too, and perhaps be seizure free. That's the plan, anyway. I think it's a good one. In fact, it's the first one I've felt truly good about in all these long years.
If you cannot view the video below you can view it on You Tube here:
Since then, we've seen this same behavior while taking Keppra, Clobazam and Banzel. We've seen the opposite reaction—zombie kid—when he took Depakote, Lamictal, Clonazepam and Zonegran. If I were a believer, I'd be praying to God that this intermittent mania is reversible. I so desperately want my kid back.
If we're lucky, it won't be more than a few months until Calvin is completely off of his benzodiazepine, clobazam, aka Onfi. He's been taking it for four-and-a-half years and though at first it did a decent job of quelling his seizures, he quickly habituated to it and the seizures returned. Each time they returned we were encouraged to increase his dose and, little by little, it far surpassed what is considered a recommended therapeutic dose, especially for a child.
Calvin has suffered a host of side effects from taking clobazam, most notably dizziness, ataxia (uncoordinated movement and gait disturbances), insomnia, psychomotor hyperactivity, agitation and excessive drooling. I know it because now, at less than half of his highest dose, Calvin shows few signs of these except in the days following a decrease in dose when withdrawal symptoms appear. Unfortunately, these side effects are magnified during a withdrawal and can also include increased seizure activity and even hallucinations.
Thankfully, the two cannabis oils we've been giving Calvin—one high in THCA and one high in CBD—seem to ease the bad side effects of the drugs and their withdrawal while keeping the seizures manageable. With any luck, the cannabis oils will one day allow us to take Calvin off of his Keppra, too, and perhaps be seizure free. That's the plan, anyway. I think it's a good one. In fact, it's the first one I've felt truly good about in all these long years.
If you cannot view the video below you can view it on You Tube here:
2.02.2015
snow days, sleazeballs and san francisco scenes
It’s two degrees, having not warmed up since five this morning, and another foot or more of snow is laying itself down on top of at least three feet we’ve gotten in the past week. Besides being frigid outside—the subzero windchill factors don't help—the sidewalk snow and sandy sludge is so craggy and deep in places that when I dare to take Nellie out for a jaunt we must walk in the street. As for Calvin, getting outside is impossible. It’s too cold and he doesn’t have boots. I’ve yet to find a pair that I can get his feet into with his orthotics or that he can manage walking in on the flat hardwood floor much less deep, uneven snow and ice. Yesterday, when a car zoomed past flattening Nellie and I against the snowbank, I kindly signaled the driver, who had a teenage boy as a passenger, to slow down. In response, the clean-cut man wearing an evil little elfish smirk, pantomimed jerking off.
“Pig!” I yelled, and I knew if Michael had been with me the sleazeball wouldn’t have assaulted me in such a way.
I've had my fill of asshole bully drivers who force me over, cut me off, ride my ass, flip me off and think they own the road. Seeing as how Maine doesn't really have a traffic problem, perhaps the bitter winters here exacerbate these losers' baseless rage. Michael was more magnanimous than I, saying that maybe the driver was having a bad day. I figured the guy was very simply a major jerk.
This, for a number of reasons my least favorite time of year in Maine, causes me to pine more than usual for San Francisco where, right about now, things are blooming, like the star jasmine which sends me into a swoon, or the bright red bottle brush, which looks a lot like it sounds, or the bougainvilleas parading their rosy blossoms in a beautiful tangle alongside fences and painted walls. If I were there now, sans Calvin, I might be hiking the hills of Mt. Tamalpais with Dave looking out over a gleaming Pacific or walking under a Tennessee Valley sun thinking of young August, who I never had the pleasure of meeting but whose ashes are there sparkling in the surf. Maybe I'd take the N-Judah out to Ocean Beach by myself or with Heather or Monica, or skinny dip and body surf with Robert and Larry at Baker Beach, or pound a beer or two with Dougie and Pam and maybe even Brook and Mike and Les, before thrifting in my good ole neighborhood, The Haight. Perhaps I’d be shooting the shit in a dive bar with Garzeloni or drowning myself in a North Beach latte topped with a golden heart cast in espresso and foam or chowing down some Chinatown dim sum from a little paper box with a wire handle. Maybe I’d head into The Mission and nosh a piping hot shrimp quesadilla with Alison, then check out her new paintings, which I know are out of this world. Maybe I’d join Doniece for a glass of wine and maybe Sara and Stephanie and Uli and Angela and Lauren and Killian would show up and maybe Sadik, too, and we'd all confer on how to make the world a better place. Perhaps I’d sit amongst the peeling eucalyptus of Golden Gate Park listening to Seth play The Lobster Song on his guitar. Maybe I’d ride a cable car out past my father’s childhood home, over Russian Hill to the wharf, then take a ferry to Sausalito. Maybe I’d go with Gwen to visit Rachel at her groovy shop then listen to live Jazz over bourbon on ice, or just wander the city streets with my camera shooting cool old houses and vistas beyond belief seen from the top of every hill. Whatever I'd do, I'd be missing Michael if he weren't there too.
Instead, I'm with Calvin who is home from school enduring his fourth snow day in a week. The storm is bad enough that we're trapped inside while he goes from spinning in the jumper to bouncing in bed to banging the shutters to mouthing his toys to climbing the stairs to eating his meals and back again, all the while playing Joni Mitchell ad nauseam trying to sooth his savage shrieks, which are as cutting as the chill outside. But at least he hasn't had a daytime tonic-clonic seizure in over five months and at least, as a result, I'm not tense and looking over my shoulder every five minutes, and at least he's happy today and at least spring is closer than it was yesterday and at least the Super Bowl hoo-ha is over and at least the douchebag in the speeding car is already becoming a distant memory, the tracks he laid down now verily plastered with snow.
“Pig!” I yelled, and I knew if Michael had been with me the sleazeball wouldn’t have assaulted me in such a way.
I've had my fill of asshole bully drivers who force me over, cut me off, ride my ass, flip me off and think they own the road. Seeing as how Maine doesn't really have a traffic problem, perhaps the bitter winters here exacerbate these losers' baseless rage. Michael was more magnanimous than I, saying that maybe the driver was having a bad day. I figured the guy was very simply a major jerk.
This, for a number of reasons my least favorite time of year in Maine, causes me to pine more than usual for San Francisco where, right about now, things are blooming, like the star jasmine which sends me into a swoon, or the bright red bottle brush, which looks a lot like it sounds, or the bougainvilleas parading their rosy blossoms in a beautiful tangle alongside fences and painted walls. If I were there now, sans Calvin, I might be hiking the hills of Mt. Tamalpais with Dave looking out over a gleaming Pacific or walking under a Tennessee Valley sun thinking of young August, who I never had the pleasure of meeting but whose ashes are there sparkling in the surf. Maybe I'd take the N-Judah out to Ocean Beach by myself or with Heather or Monica, or skinny dip and body surf with Robert and Larry at Baker Beach, or pound a beer or two with Dougie and Pam and maybe even Brook and Mike and Les, before thrifting in my good ole neighborhood, The Haight. Perhaps I’d be shooting the shit in a dive bar with Garzeloni or drowning myself in a North Beach latte topped with a golden heart cast in espresso and foam or chowing down some Chinatown dim sum from a little paper box with a wire handle. Maybe I’d head into The Mission and nosh a piping hot shrimp quesadilla with Alison, then check out her new paintings, which I know are out of this world. Maybe I’d join Doniece for a glass of wine and maybe Sara and Stephanie and Uli and Angela and Lauren and Killian would show up and maybe Sadik, too, and we'd all confer on how to make the world a better place. Perhaps I’d sit amongst the peeling eucalyptus of Golden Gate Park listening to Seth play The Lobster Song on his guitar. Maybe I’d ride a cable car out past my father’s childhood home, over Russian Hill to the wharf, then take a ferry to Sausalito. Maybe I’d go with Gwen to visit Rachel at her groovy shop then listen to live Jazz over bourbon on ice, or just wander the city streets with my camera shooting cool old houses and vistas beyond belief seen from the top of every hill. Whatever I'd do, I'd be missing Michael if he weren't there too.
Instead, I'm with Calvin who is home from school enduring his fourth snow day in a week. The storm is bad enough that we're trapped inside while he goes from spinning in the jumper to bouncing in bed to banging the shutters to mouthing his toys to climbing the stairs to eating his meals and back again, all the while playing Joni Mitchell ad nauseam trying to sooth his savage shrieks, which are as cutting as the chill outside. But at least he hasn't had a daytime tonic-clonic seizure in over five months and at least, as a result, I'm not tense and looking over my shoulder every five minutes, and at least he's happy today and at least spring is closer than it was yesterday and at least the Super Bowl hoo-ha is over and at least the douchebag in the speeding car is already becoming a distant memory, the tracks he laid down now verily plastered with snow.
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