6.30.2014

faith of my father

The gin and tonic my friend Kellie had given me as I reclined in a bay window did little to ease my worry over my listless two-year-old boy. Calvin slouched limply in my arms in the late-afternoon heat, the cicadas’ buzz splitting the muggy air. Suddenly, the color drained from his face, and his mouth twisted into a grimace, as if he’d eaten something rotten. As the seizure took hold of his brain, his body stiffened into a plank, and his glassy blue eyes rolled back into his head.
 

“Here it comes!” I called, and Kellie and my husband, Michael, came running.
 

Guests who had come inside quickly ushered their kids back out. “Daddy, what’s the matter?” I heard one of them ask from the other side of the screen door. I have no idea what the father told his child or if he even knew what was happening.
 

“Call 911!” I said. Calvin began convulsing, his eyes fluttering, his lips smacking with each new spasm. We turned him on his side and pulled down his diaper. I grabbed the vial of rectal Valium from the pouch in his stroller, cracked off the cap, and carefully inserted its tip into my child’s anus. One, two, three, I silently counted, as I depressed the syringe, injecting enough benzodiazepine to knock a full-grown man out cold ...

—Excerpt from Faith of My Father, which will appear in the August issue of The Sun magazine. To read the entire piece when it comes out, you can subscribe here.

photo by Michael Kolster

6.27.2014

cannabis can do

Last night I had a dream about the THCa cannabis oil I am making for my son Calvin to treat his intractable epilepsy. In it, I was describing its properties to someone, educating them, as I am known to do in daily life. Some might like to call my son's success with cannabis anecdotal. I call it plain, palpable, real.

My husband is generally more cynical than I, but we have both seen cannabis' positive effects. It has helped our son sleep better, a boy whose sleep has been interrupted for years by nasty, addictive, deleterious benzodiazapines, which have never completely controlled his seizures. It has calmed him even in the face of taking high doses of two drugs that cause him to bounce off of the walls. Since taking the cannabis oil, a kind that is high in the non-psychoactive cannabinoid THCa, he wakes happy and content instead of irritable and whining.

Long before cannabis, there were months on end when Calvin used to sit—stupefied—in the middle of the room like a floor zombie and do nothing. The dust bunnies were more responsive than my boy. The drug cocktail (way too nice of a moniker) of zonisamide, lamotrigine and clonazepam sent him into oblivion, yet he'd still have a dozen grand mal seizures every month. His current combo of clobazam, brand name Onfi, a relative of Valium, plus leviteracetam, brand name Keppra, has for over three years caused him to be hyperactive beyond belief, unable to sit still and be read to, or to play with his toys for more than a few seconds before having to get up and move. Thankfully, over a year ago we eliminated the third drug in that crazy concoction, rufinamide, brand name Banzel, that turned him into an anorexic, raving lunatic. Since taking cannabis, Calvin now plays with his toys for several minutes at a time.

Besides being calmer, more focused, happier, sleeping better, walking better and standing stiller, Calvin is having substantially fewer daytime seizures. In the months before taking the cannabis oil he was having one daytime tonic-clonic (grand mal) seizure every three to fourteen days. Since taking a therapeutic dose of the THCa cannabis oil he has had only one daytime seizure in seventy-one days! Moreover, we have weaned Calvin off of 25% of his benzodiazepine, clobazam. By the way, for those of you who hope to do the same, benzodiazepine weans should be done very, very slowly, in 10% increments every several weeks at the very least. Done slowly and safely in order to prevent benzodiazepine withdrawal syndrome—a serious condition that your child's neurologist might not inform you of—weaning can take many months to achieve, perhaps longer than a year depending upon the dose. If your child is on clobazam (Onfi), this can be more easily accomplished using the liquid suspension of the drug rather than cutting pills. Your child's neurologist might fail to tell you that, too.
 
Calvin is still having a small handful of nighttime seizures each month, likely because we do not wake him and struggle to administer his cannabis oil in the middle of the night. Instead, we have increased his bedtime dose and, if need be, we will soon be adding a high CBD (cannabidiol) oil to his bedtime regimen. With luck, the cannabis combo will knock his seizures to the ground, allowing us to successfully continue reducing his pharmaceutical meds.

And in case you were wondering, we have seen ZERO negative side effects that could be contributed to the use of cannabis, only positive ones.

If you live in a state where high CBD cannabis oils or plant strains are not available—and even if they are—consider trying a non-psychoactive THCa cannabis oil, which might be just as effective for your child, perhaps more so, and very likely more cost effective. You can find and download the free Epsilon Apothecaries recipe I use here. It's as easy as pie.

P.S. Cannabis has also proven effective in treating other conditions, including various forms of cancer.

Calvin playing with his toys for over ten minutes

6.23.2014

in the moment

Yesterday, I read a blog post written by a mother about her daughter, Lydia. Lydia’s father had found her blue, stiff and face down in bed, her death the result of a prolonged seizure, a moment I imagine most parents of children with epilepsy fear. Lydia’s mother had written how she was thankful that her daughter had “died in her sleep and not in the hospital hooked up to tubes,” a miserable state in which so many of us have seen our children.

Early this morning, a moment before sunrise, Calvin woke to his second seizure of the night, and after I syringed part of his morning seizure medicine into his mouth, he went right back to sleep. As I laid by his side, I feared he’d wake to a third, and even dreamed about it once I’d drifted off in his arms.

After I awoke a third time and while Calvin slept, I laid there thinking about Michael’s uncle who died over the weekend after a hard battle against cancer. Thinking about him and his family conjured a mix of emotions: gratitude for the fact that he’d remained sharp and coherent, deep sorrow that his body was forced to surrender to so much suffering. I thought next about my father, who had fought cancer for five years, including two consecutive bouts of pneumonia, before dying suddenly one night at home. He was only seventy. One of my brothers had said to my mother that Dad wouldn't have died if he'd been there, implying that my mother was somehow culpable. Hearing that sickened me. Then I thought about my mother, who is eighty-four and has been plagued by Alzheimer’s for at least thirteen years, perhaps decades. She has forgotten most of her life experiences, all of her friends and much of her family. The disease has shattered her coherence into tiny pieces, but when you ask her if she is happy, she’ll almost always say, “You betcha!” My sincere hope is that she will die peacefully in her sleep before the Alzheimer’s robs that happiness from her.

I thought, too, about my friend Chris who lost his fourteen-year-old son, August, last year, and my friend Christy whose son, Will, died just before his fifth birthday. Both boys were like Calvin in many ways. They were happy kids when they were feeling good, though both required intense around-the-clock care with feeding and bathing and diaper changing and transporting. Their parents' lives then seemed like ours, stifled in so many ways because of our severely disabled children. I wondered if they sometimes felt conflicted about their children, wondered too how their lives have changed in the absence of their boys.

Then I remembered a friend whose healthy son had been so very difficult to raise during his teens that she'd asked God to take him, and the mother of a child with leukemia who asked God to let her keep her daughter for a few more years to see if she'd excel in school, and I remembered thinking once or twice, if Calvin dies before he can walk by himself or say a few words, if it would all seem a waste.

Climbing back into bed with Calvin after giving him the rest of his morning seizure medication, I kissed him and imagined what life would be like for us if he died in the night. I'd no longer have to worry. I wouldn't have to give him medicine or see him endure seizures or headaches or tummy aches or dizzy spells or mania and I’d be able to sleep well, travel and relax. He wouldn’t have to seize or lie awake at night for hours in discomfort and I wouldn’t have concern about what might happen to him after we die, who will care for him, who will love him, who might hurt him. But he’d be gone and so, too, would his smile, his hugs and kisses and giggles, the smell of his breath and the feel of his soft, springy skin. My days would be empty and I’d lie awake at night searching the stars to find him. Perhaps my love of gardening would fade and my reservoir of thoughts and images to be put into words would wither and die. I wondered if I'd blame myself, wondered what would happen to my good marriage.

No matter how I looked at it though, whether wanting Calvin to live or imaging him gone, it all seemed so selfish. But then I stopped myself and thought of the suffering—this needless suffering of a ten-year-old boy who can’t tell us what he might want to tell us and doesn't know why he feels so incredibly bad much of the time—and it put me back in the moment, which is where I need to always be in this crazy, effed-up world. In this case, it happened to be in bed soothing my little boy, his arms around my neck where he so often wants them to be.

photo by Michael Kolster

6.20.2014

things that make me breathe easier

husband. fresh air and wind. peonies. cannabis for my sick kid. not having to split tiny, unsplittable pills. barbara. sitting alone in the eveningstar theater with a bag of popcorn. gardening. long views. bourbon on the rocks. sunlight and golden fields. seventeen seizure-free days. date night. drinks with the gals on a warm afternoon in the shade of a balcony built over the river. smutty humor. laughter. green. wes anderson films. azaleas. calm boy. smiling boy. toddy's on the porch with woody. dancing by myself to a live blues trio in a narrow space amongst a happy crowd in a dark tavern where no one else is dancing, where the bartenders are funny and michael is within arm's reach watching me with a smile on his face. sleep, if i could get some. friends and neighbors. summer.

6.16.2014

more forgiveness

On a recent rainy day I watched a film about forgiveness. Exiting the theater into blinding sunlight, I saw things anew. I saw how the clear skies forgave more than a days' worth of rain, how the wilting rhododendron flowers laced with rotting brown forgave the rain, too. Evergreen bows hung low forgiving the coat of droplets burdening them, then they forgave my sheers for cutting into their flesh hoping to spawn new growth.

A carpet of soft green forgave the heels of my boots, which sunk into its moistness. I forgave myself for lopping down the slightly sickly crabapple in exchange for a long view of the garden and the deep sigh of relief that spaciousness can offer.

The Cannabis Man came by and I forgave his long absence with a hug and a visit to the garden where the mosquitoes lunched on our flesh. But we forgave them because it was worth risking their bite to breathe the sweet vanilla scent of white azalea blossoms splotched with yellow, to see the delicate tips of iris and swelling peony bobbles.

Later, I forgave Calvin for pulling the hair at the nape of my neck, and he I, for the string of bitter words I pitched his way. I forgave him for his poor balance and for his intermittent lunacy, and he I, for my neglect.

I forgave the psychotic chipmunk chirping ad nauseam from one corner of the garden, and the crow for fouling the birdbath with the mushy white bread it gets from an unknown neighbor.

In hindsight, I forgave the bits of soggy movie popcorn because it was drizzled in real butter and tasted delicious. I forgave the drivers—all of them—the slow, the erratic, the ones who don't signal or allow me to merge. I forgave the man in line in front of me at the grocer who wrote a check in the EXPRESS lane.

And the earth forgave the darkened skies, its tender green spears thrust upwards like the necks of chicks to their mother. I forgave the bottle of bourbon holding barely a drop in its base. I forgave myself the cheese quesadilla for its burnt underside and the avocado for its brown spots.

I learned recently that Calvin's exome sequence came back absent of any genetic mutation that might explain his condition, which leads a mother like me to wonder what happened—what I might have done—to contribute to his demise. It could have been one of any number of things—those sips of wine or morsels of goat cheese, those swim workouts, the chlorine, the wall paint, the respirator. I can't know, and Michael insists it was nothing I did. But I must find a way to forgive myself, even if there is nothing to forgive.

6.15.2014

dear old dad

Dear old Dad,

You left this earth far too early, far too young. I hope your pride in me exceeded your disappointment. I think of you every day when I tend to my rhododendrons, when I eat my oatmeal and sometimes when I drink my coffee. I say the same things to Calvin that you said to me, like, "You know I love you, dontcha kid?" and "How many times do I have to tell you?!"

I love you and miss you and I know that your ashes, which I scattered on the side of a mountain in a glen of forget-me-nots and in the wind at the water's edge, are still reflecting the sun's light and warmth.

Christy

6.11.2014

cannabis, colds and cuddles

Since Calvin began taking a homemade THCa cannabis oil for his epilepsy, we have seen many improvements in his behavior, sleep and focus, plus an easier, albeit slow, wean from his benzodiazepine. Most notably, however, is the fact that in fifty-five days he has had only one early evening seizure. Prior to taking the cannabis oil he'd have an early evening seizure every five to fourteen days. The downside is that his seizures have migrated to the middle of the night or the very early morning, but I'm guessing that is because we don't give him any cannabis oil in the middle of the night.

In an effort to mitigate the nighttime seizures we have increased his evening dose, and if that doesn't work I am hoping to get my hands on some high CBD oil, if The Cannabis Man I've been talking with would please return my copious calls and emails. If not, I'll make it myself. In the meantime, my second batch of THCa tintcure is evaporating into resin as I write this.

I've included some photos of Calvin with his nurse, Barbara, having a lovefest. Even with an ear infection and the nuisance of a common cold, Calvin is feeling pretty damn good, no doubt in my mind greatly due to the cannabis oil.







6.09.2014

snapshot

Toweling off after a weekend shower, rid of soil and sweat and, with any luck, ticks, I am bathed in late afternoon light and its long sultry shadows. I glance at the opposite shelf, realizing it is a sort of snapshot of my life. These are the things I see:

A tall glass half full of water, of which I don't drink nearly enough, perhaps resulting in or contributing to the spells of vertigo I've felt of late.

Baby monitor on ribbon, which, if I must leave Calvin's side even for a minute or two, is humming in my ear or sitting next to me on a shelf as it has been for the past ten years.

Calvin's glasses, bent, banged up and gnawed upon. He's worn glasses since he was eleven months old because he is legally blind times five, which is partly why I spend hours each day ensuring that he doesn't run into things. His first wee pair barely spanned the width of my palm.

One small tumbler, also measuring the width of my palm, cradling two ice-cubes and a shot and a half of bourbon, my late afternoon elixir of choice for celebrating life's victories, both large and small, numbing the blues or simply chillin' after a long day.

A tiny hair clip for which to put up my thinning, greying hair only to have it yanked out again by Calvin.

Small tube of Debrox earwax removal gel for Calvin, which, we've been told, has not contributed to the ear infection he has at the moment.

Black and white floral soap box with magnetic lid for holding hair ties, barrettes, razors, clippers, tweezers, tampons and chapstick—some bare essentials of self care.

Several rolls of toilet paper, emblematic of cleaning up all the shit (literal and figurative) that life throws our way.

Still, it's a beautiful scene.

6.08.2014

batch no. 2

I am in the process of producing my second batch of high THCa cold-tinctured cannabis oil to treat Calvin's epilepsy. Making it is as easy as pie, and for those of you who are intimidated by the process, don't be. If you can follow a recipe, you can make cannabis oil. And for those of you without access to strains of cannabis high in CBD, this is a good place to start. THCa, in its non-psychoactive, raw, acidic form, is a neuroprotectant and Calvin has seemed to benefit in many ways from its use. We've seen improvements in his sleep, focus, behavior, balance and we have been able to reduce his benzodiazepine, Onfi, by fifteen percent with minimal withdrawal affects. And through the wean, Calvin has not had an appreciable uptick in seizures even though he is on a smaller dose of anticonvulsant pharmaceutical medication. You can find the Epsilon Apothecaries recipe here.

6.05.2014

freedom envy

Tuesday:

This morning I laid awake in Calvin's bed with my arms around him after he’d had a seizure. He shivered and shook for a good part of an hour, half asleep, half awake. As the seizure was waning I’d given him several drops of cannabis oil with the hope of preventing a second one.

As I rested with my eyes closed, I thought about an encounter I’d had on Monday while bicycling across campus to the grocery store. The sun had been out, the air smelled fresh, and it felt good to be untethered from Calvin with the wind in my hair. At a crosswalk I met three moms toting their kids. I hugged my friends and shook hands with the third mother whom I didn’t know. One by one I greeted their children, sweet smiles beaming from each of them when I did. My friends, who were glowing, albeit perhaps a bit weary, proclaimed that they were done having babies. When the third woman asked if I had any children I told her that I have a ten-year-old son. “Are you done?” she asked, and I took it as somewhat of a compliment since I am fifty. “I’ll never really be done,” I said half chuckling, then I went on to explain how much Calvin is still—and will always be—much like a baby, in that he can’t talk, still wears diapers and can’t walk all by himself. “He also has epilepsy,” I added.

Since I was child-free at that moment, one mother mentioned how she was jealous of my freedom, saying that sometimes, when she drives by my house, she sees me sitting at my computer writing. She expressed great longing for that kind of time to be hers. I replied by saying how grateful I am that Calvin is in school most of the day. Then, in a manner which appeared to parry the comment about freedom envy, my other friend looked into my eyes and said something like, "The grass can sometimes look a little greener from either side."

With a busy day ahead of me I said my goodbyes and took off for the store. As I rode I reflected on our conversation. I wondered what kind of freedom some people think I have. I wondered, too, if they ever drive past when I am struggling with my stubborn boy, when he is yanking my hair and dragging his teeth across my face, when I am walking endless, monotonous circles around the house and yard holding his harness, or listening to him scream bloody murder, or thwarting his eye poking, ear poking, finger snapping and sun staring. I wonder if they hear me when I am screaming at the top of my lungs, when I'm trying to change his messy diaper while he thrashes and shrieks and shit gets everywhere. Do they see me when I am tending to him during a seizure, when I am logging every detail about his drugs and his poops and his appetite and his behavior and his temperature and his balance and his countenance, when I am waking up to check on him three, four, five times a night—like a new mother—which I’ve done most nights over the past ten-plus years? I wonder if they go past when I'm trying to determine the source of his hurting, when I lift all fifty pounds of him from jumper to highchair to changing table to bed and back again, when I bathe him and dress him and undress him and dice his food and brush his teeth and cut his pills and spoon feed him and worry—constantly—about his safety and well-being, about the drug side effects, about him choking, about his kidneys, his teeth, his bowels, his bones, his skin, his eyes, about his drug withdrawal, his increasing seizures, his mortality, his tenuous future, about what would happen to him if I die before he does.

Later, I shared the episode with Michael. “Freedom? When was the last time we took a family vacation?” he asked, perturbed, and I considered how we rarely even go out to breakfast or lunch as a family and have never taken Calvin out to dinner. We don’t go to school pizza parties or bowling nights or dances; they all occur around the time that Calvin gets his nighttime meds and is off to bed. And even if we could go, he’d be impossible and we’d spend the entire time redirecting him from the exits, making sure he didn’t bite filthy surfaces, metal or glass, keeping him from dropping to the ground, preventing him from tripping and running into things, calming him when he’s manic, watching for a seizure. We don’t go to the playground, I don’t watch him in school concerts or pageants, we don’t go for bike rides or hikes or to the beach to play in the sand. We don’t take him to the movies or watch them together at home. We don’t go to birthday parties or buy him ice cream cones or hamburgers and fries. He doesn’t have sleepovers, nor does he have any true friends to speak of. He can’t do sports or play in a band or enjoy rides at a carnival or play catch or draw pictures at home or read a book quietly in his bedroom much less sit still to have one read to him.

Freedom? I think. Michael adds incredulously, “What? Jealous of one of the worst losses that can happen to a human being?” Then I thought of how our relative lack of freedom is a First World problem, and I realized what a whiner I was being. I thought of all of the families who have lost children or who have children worse off than Calvin, of the families that barely get by, or don't have fresh drinking water or shoes or a decent education or a safe neighborhood or proper medical care or sufficient shelter, or are suffering from famine or disease or war, and I realized how lucky we are.

Then, revisiting the mom encounter and the freedom envy remark, I thought perhaps it might have simply been an attempt to do what so many others have tried to do, which is to level the playing field for my benefit. With a disabled child, though, there is no leveling. It’s not a place where, “Welcome to motherhood” applies or can assuage any of the hurt or the hardship. It’s like what I told the three moms before I rode off on my bike, about mothering our different children: "We all have our challenges ... you really can’t compare."

6.02.2014

not one more

Too often, I imagine what might happen if my son Calvin suddenly died. What would I do, how would I feel, how might I survive the grief? Because of his epilepsy, his mortality rate is three times that of the rest of us, and if it weren’t for constant, hands-on supervision, his risk for accidental death would be twenty-four times greater. So when I heard the news of another mass shooting, this one in Santa Barbara, where a jilted young man killed six students before killing himself, and when I watched one victim’s parent grieve publicly, I thought of Calvin's mortality again and my body shivered with chills.

Richard Martinez, the father of an only child, twenty-year-old victim Christopher Michaels-Martinez, spoke to the media demanding immediate action from Congress and President Obama to curb gun violence by passing stricter gun-control laws. He spoke briefly and passionately, blaming “craven” politicians and the National Rifle Association for lax policy that he and others believe contributes to countless tragedies such as Columbine, Virginia Tech and the Sandy Hook Elementary School massacres.

Martinez has started a campaign urging people to send electronic postcards to Congress with the message of, Not one more firearm death. I sent mine immediately, and shortly thereafter I read a Facebook exchange that began with a reaction to a posting of a New Yorker story titled Christopher Michael-Martinez’s Father Gets It Right. One man had this to say about the bereaved father:

"That was guy was a straight up actor ... Come on this is all propaganda. What a freaking joke."

This ignorant, insensitive comment about the father’s anguish being an act, being propaganda, being a joke, sickened me. It brought to mind all of the parents of the twenty Sandy Hook Elementary School first-graders who were murdered in a spray of bullets from a semi-automatic gun with multiple large-capacity ammunition clips. Some of the children killed had their hands and faces blown off, others were riddled with as many as eleven bullets. Then, I thought of my dear friend Heather’s Goddaughter, nine-year-old Christina Taylor Green, who was shot to death the day of Gabrielle Giffords' constituent gathering in Arizona a few years ago. I thought about the father of three former swimmers of mine who shot himself at home one night. I thought about the countless women killed in domestic disputes by guns they’d bought for their own safety, about the hundreds of children who've found a relative’s or a neighbor’s gun and accidentally killed their sibling or a friend. And I thought of all the innocent men, women and children shot by angry, bigoted, trigger-happy men who falsely claim self defense or stand-your-ground. Would these victims' loved ones be opposed to stricter gun-control measures?

The Facebooker went on to say that it was “weird” for the grieving father to attack the NRA, going on to say that, “It’s funny how Obama fights so hard to take away our right to protect ourselves ... kinda like Nazi Germany ... he wants everyone to lose their right to have a gun.”

It pained me to read the offensive comment, comparing a common sense desire for reasonable gun-control legislation intended to save innocent lives to the systematic torture and extermination of six million people, mostly Jews. The comparison is repugnant and distorted, hurtful to the families who lost loved ones and relatives during the Holocaust and who are haunted by it to this day.

Anyone who thinks that Obama wants everyone to lose their right to own a gun is deluded. It's wise to apply stricter background checks and limits on particular types of guns and magazines while increasing other safety measures to buying, selling and owning guns. A buy-back program like the one Australia conducted could get hundreds of thousands of guns off of the streets and out of homes, thereby significantly reducing mass killings, homicides, suicides and accidental deaths. And, no, asking if we should outlaw knives is not a good comparison to gun-control. Show me a knife that is made expressly for killing people that can be aimed into a crowd from a fair distance murdering scores of people within seconds. And, yes, we should consider other methods for curbing gun violence such as improving access to mental health services and by identifying and treating those who might be a threat to society.

What is fact and not purely conjecture is that the NRA pours millions of dollars into the campaigns—perhaps even the pockets—of politicians. They lead the gun lobby with their vested interest in relaxing gun-control policy so that more people can purchase firearms thereby stoking gun industry fortunes. When it comes to certain trades, politicians and oligarchs, it's all about greed for money and power, which is why the NRA's solution to any massacre is to suggest that more—rather than fewer—people should own guns. I'm sure that if it were up to the NRA, they'd support any child old enough to walk owning a gun, just like the cigarette companies that are addicted to marketing carcinogens to children. Money, money, money, money. Makes me want to puke.

The NRA has become adept at fear mongering, convincing some Americans that owning guns will make them safer, while just down the street some toddler is playing with a loaded pistol and some father is putting a gun in his mouth and some mother is being blasted by a spurned boyfriend and some innocent stranger knocking on the door asking for help is shot square in the face because of trumped-up fear.

Today, Christina Taylor Green would be about twelve years old, just two years older than Calvin. Had she survived the mass shooting in Tucson I bet she'd be pressing for stricter gun control now. That's just the kind of girl she was ... smart, unafraid and interested in the welfare of others, not in getting richer, not in getting elected, not in propaganda and not in being a "straight up actor." And when the Sandy Hook massacre took place, my son Calvin was the same age as the children who suffered and died. If he knew of that tragedy, and if he were capable, I'd bet he'd be sending his postcard to Congress too, urging them to grow a spine and to tell the NRA to go to Hell along with their money grubbing, shady motives and twisted theories, telling them to do what is right in an effort to ensure that there is not one more of us lost to guns.

photo Associated Press