the moon and the twinkling stars

From last December:

In bed alone last night I hugged my knees to my chest in an effort to keep warm. I gazed sideways out the western window at a web of black branches and a scant mist suspending the moon, which appeared as a stemless goblet half full of shining silver. I thought about the twenty Newtown, Connecticut first-graders and it occurred to me that the moon might be holding all of their brightness for the rest of us to see.

I’m having a hard time not thinking about those children, but perhaps I shouldn’t be trying to avert my thoughts, shouldn’t attempt to move on so quickly, or forget. As I sat in the doctor’s office eyeing glossy magazines with names like, Parenting, Family and People, I thought of them again. I picked one up and thumbed through its pages, which were plastered with images of happy families, proud parents with their beautiful kids reading, snuggling, smiling. I usually avoid looking at these kinds of periodicals since they underscore so many things I am already painfully aware that I am missing out on, being the mother of a severely disabled child. I wonder how the Newtown parents might react when they see this kind of stuff or watch television with its stacked nanoseconds of happy, healthy, glowing, well adjusted, perfectly complexioned children saturating the airwaves. It must burn, stab, strangle, eviscerate—perhaps even kill.

Their days must be long, if that word can even come close to describing the protracted misery of a minute’s passing in the absence of one so innocent and adored. My own days drag on caring for a child who we feed, bathe, hug, kiss, keep warm and dry and safe, though little more. It’s monotony at times, and yet completely incomparable to the plodding torment of these parents and families who’ve been robbed blind of their most prized possession.

But then my mind wanders back to the moon, that brilliant cup reflecting the suns rays so brightly that, even half-full, it illuminates all that would be black in its absence. I think of those children who are gone from this world but not from this universe, and I see them too as tiny points of light, a twinkling star in the sky reserved for each one of them, and for us to delight in, rely on and wish.

http://www.trekworld.com/2012/11/23/mount-baker-moon-and-northern-lights/

friday faves - twenty six

Stepping
into a seaside childhood morning
—only colder—
Wind whipping,
Moist and grey and brisk,
Rudy by my side.

Muddy
gravel underfoot,
Bits of sandy ice, a soggy cigarette butt.
The chapel bell begins to ring,
I stop to listen,
and count.

Twenty-six.
My head hangs low
and sorry,
Straining to hear each faint toll
amid the hiss of traffic
rushing by.

The fields,
A semi-frozen marshland.
My ribs lace up,
Wind whisks away each breath,
I begin to sob into shallow
glass puddles.

A sudden squall
evokes a school of hushing voices.
The tops of watchful trees
Standing tall and firm,
yet swaying
Nonetheless.

Silent forest,
distant barking dogs,
A murder of crows looks on.
Thwap, thwap, these rubber boots against
Bare calves
Sting.

The skies
are silver, lead and low.
Shivering limbs set free cool droplets
like tears upon my face,
One for each child lost we must remember.
 Twenty-six.

In loving memory of the Sandy Hook Elementary School victims.

photo by Michael Kolster

gleaning green

The speed at which information can be gleaned astounds me. A little over a year ago I first began comprehensive research into medical marijuana for the treatment of epilepsy. Subsequently, I asked Calvin’s neurologist whether she thought we should consider trying it for Calvin since ten antiepileptic drugs and two dietary treatments had failed him. She dismissed the idea citing that there was no hard and fast evidence proving its efficacy and that it remained illegal at the federal level. Less than six months later she was testifying before the Massachusetts Department of Public Health on the benefits of medical marijuana for treating medically refractory epilepsy.

Several months after our visit with her, we took Calvin to see a new neurologist in Maine. When I broached the subject of medicinal cannabis, he too dismissed the idea, citing similar reasons, that there were no double-blind placebo studies proving its efficacy. Cynically, he added that if he were to prescribe medical marijuana then everyone and their uncle would be coming in for a prescription. To promote the green treatment option, I even asked a dear friend, who was bringing her disabled son in to see the neurologist later that week, to press him on the idea as well.

Calvin’s pediatrician, on the other hand, was all ears. She and her nurse practitioner sifted through my copious emails on the subject of medicinal cannabis. I forwarded TED talks and weed documentaries and testimonial videos and newspaper articles and surveys, all of which showed compelling evidence that medical marijuana works to help control seizures in children with medically refractory epilepsy while causing little to no side effects besides, perhaps, drowsiness. These anecdotes also described improvements, not only in seizure frequency and severity, but in behavior, appetite, focus, clarity, sleep and coordination. I hooked up Calvin’s pediatrician with a local DO who regularly prescribes medical marijuana, and who gladly imparted his knowledge. I got Josh Stanley’s email, the man behind the successful strain of high CBD (cannabidiol) cannabis, Charlotte’s Web, named after the child who has had near miraculous results from its use, and I gave it to Calvin’s doctor. The two of them corresponded. She spoke with Calvin’s neurologist on several occasions hoping to persuade him to endorse the treatment for Calvin. He’d since received Calvin's former neurologist's testimony on the subject and he decided to sign a letter of recommendation for our son.

During the next several months and into autumn, I read and researched and networked online trying to find a high CBD strain of medical marijuana in Maine or in a neighboring state. A friend recommended a local organic grower willing to grow and tincture for us. I’ve spoken with dispensaries and doctors and growers and caregivers. In the past couple of weeks I’ve learned that a non-reactive (non-psychoactive) medicinal cannabis tincture rich in CBD but not necessarily low in THCa (preserved in its acid form by not heating) can be beneficial to patients with epilepsy. I’ve connected with these compassionate caregivers and have exchanged emails and phone calls hoping to understand their process of tincturing, which according to them renders effective results for patients with medically refractory epilepsy while—not unlike the Charlotte's Web growers purport—claiming to be non-psychoactive. I introduced our potential grower with the experts in this particular field of tincturing, hoping that they can speak to each other this week and perhaps get the flower into tincturing very soon since the strain, one called Cannatonic, is ripe for harvest at our grower's location.

For now, I am still waiting for my caregiver license and Calvin’s patient card to come back in the mail from DHHS. Hopefully, I’ll be visiting the grower to see his operation soon. Local labs where the strains and tinctures can be tested for content will soon be up and running and I am expecting to see some sort of breakdown of possible costs from the grower when I speak to him next.

All of this has been a big undertaking, sprinkled with thousands of Facebook posts from anxious parents in similar situations thirsting for information, an equal number of comments advising the best methods, time spent meeting with other moms and spreading the word, interviews with journalists and photo ops not to mention writing the blog and the day-to-day care of a child with a chronic illness who can’t do anything for himself.

It all reminds me of a blog post I saw recently, discussing the question that stay-at-home moms often get from other women which is, "What do you Do all day long?" For now, I am gleaning green, sisters, gleaning green.

photo by Michael Kolster

before sunrise

Pitch black outside, frosty cold and damp, the sun not having come up yet. I sink my chin into the ruff of my winter jacket, fighting sleep, fists shoved deep into my pockets. In the back seat of Pam’s beater Nova, I’m nestled in next to my buddies, Lidia and Katie, tracing smiley faces on the steamed up windows. The dots I’ve made for eyes melt into tears.

We idle silently in darkness as other cars begin to arrive, each shining its headlights into our warm interior, square patches of light shifting and panning over our tired faces. We wait for Coach to arrive and unlock the door, secretly hoping he won’t show so we can go back home to bed because we need our sleep, which is perpetually denied. With boyish bodies, narrow hips and flat chests, we are fourteen, but on our way to making the change.

Undressing in tired silence, we strip down to the chlorine-bleached swimsuits we’d slipped on under our school clothes before dawn. The tile floor feels cool and slick. We dread what is about to happen—at least I do. One by one we saunter out to the pool deck, snap on our swim caps, tuck in our hair, adjust our goggles and peel off into the tepid water. The first plunge is a shock, but then we get moving, creating a swift eddy within each narrow lane. The water tastes like soda ash and sweat. Soon we feel the pain—the pain of burning lungs and muscles starved for oxygen, the ache of churning limbs gone miles given little time to rest and cling to the gutter. We watch the clock, which with its large flat face watches us—mockingly—its austere second hand mercilessly sending us off with only moments to catch our breath. We repeat this pain after school. We repeat it the next day. We repeat it the next week, the next month, the next year, and the one after, and the one after, and the one after. We are aquabots. We are jocks. We are mermaids. The water is our second home. It softens us and hardens us at the same time. We become it—malleable, forgiving, resistant, reflective.*

These days I experience much of the same, waking before dawn, sleep deprived, to see the sun just beginning to come up, dreading what is about to happen, shocked by the sound of Calvin's first whine. The clock labors along as we pace back and forth and back and forth between bookcase, shutters, table. I taste the bitter pill of monotony, worry, frustration, of what has, in great part, become my life. I repeat it all the next day, the next week, the next month, the next year. My boy Calvin softens me and hardens me at the same time, my dotted eyes sometimes melting into tears.

*Excerpt from a work in progress temporarily titled Memoir.

tree trimming

Stepping into the house for the tree trimming I smell hints of what I think are pine-balsam, apple-cinnamon and vanilla. The cold follows us in from outside as we pluck Calvin’s coat off and navigate him through the kitchen, hand in hand, into the dining room trying to keep his fingers off of tables and out of guests' drinks.

Instantly, our hostess Lauren and a kind friend of hers I’ve never met descend upon us, crouching over to receive our boy. Calvin gets a hug from them both and a piece of orange slice from Lauren's friend, whose name, regrettably, I don't catch. I glance up to see a man wearing felt antlers grasping a glass full of ice and punch. At first his gaze avoids mine while his partner looks curiously at Calvin. I wonder what they are thinking of us, their slack mouths taking sips of booze with blueberries, their blank expressions fixed on us like magnets seemingly void of holiday cheer.

Lauren offers Calvin a gluten-free dairy-free chocolate meringue cookie. I pinch off a piece and pop it into his mouth. He seems to enjoy its crisp, chewy texture and opens his mouth for more. He can't sit still so together we squeeze past a few guests on our way to the Christmas tree where we find another handful of friends. We exchange hugs with several then Michelle and I grumble about recent, ignorant, mean-spirited posts on Facebook by so-called Christians whining about the use of the increasingly popular and considerate greeting, “Happy Holidays,” then, in the same posts, vowing to offend others by “Merry Christmasing the crap” out of everyone. Really.

The tree, alight with bobbles and bangles and holiday lights, glows in the cozy room, which is filled with laughter and conversation. Calvin remains quiet and engaged for the most part, but then eventually begins yanking my hair and heads toward the door about thirty minutes after our arrival. When he begins to fuss I tell him that we are going home and he quiets. I know he understands me, and that is a gift of the best kind, the kind that can't be bought in a store, boxed up and wrapped in paper and string awaiting the arrival of Christmas.

onfi (clobazam)

Onfi (clobazam) is one of the two antiepileptic drugs that Calvin takes to control his seizures. It appears to be only partially effective even though his dose is far from small. It is a benzodiazepine derivative related to Valium, which means it has the tendency to cause addiction. As you might imagine, it has bad side effects, the most common of which are headaches, dizziness, drooling, poor coordination and drowsiness, though that list represents just the tip of the iceberg. It makes Calvin drool a lot and it seems to cause him to be hyperactive and agitated and possibly suffer memory problems, which may contribute to his protracted development.

One morning last week I read the following sober news about Onfi in a regular email which I receive weekly from the Epilepsy Foundation's Epilepsy Therapy Project:

The U.S. Food and Drug Administration (FDA) is warning the public that the anti-seizure drug Onfi (clobazam) can cause rare but serious skin reactions that can result in permanent harm and death. We have approved changes to the Onfi drug label and the patient Medication Guide to describe the risk of these serious skin reactions. Patients taking Onfi should seek immediate medical treatment if they develop a rash, blistering or peeling of the skin, sores in the mouth, or hives. Health care professionals should discontinue use of Onfi and consider an alternate therapy at the first sign of rash, unless it is clearly not drug-related.

These rare but serious skin reactions, called Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN), can occur at any time during Onfi treatment. However, the likelihood of skin reactions is greater during the first 8 weeks of treatment or when Onfi is stopped and then re-started. All cases of SJS and TEN in the FDA case series have resulted in hospitalization, one case resulted in blindness, and one case resulted in death.

Onfi is a benzodiazepine medication used in combination with other medicines to treat seizures associated with a severe form of epilepsy called Lennox-Gastaut Syndrome. Serious skin reactions have not generally been associated with other benzodiazepines.

Patients should not stop taking Onfi without first talking to their health care professionals. Stopping Onfi suddenly can cause serious withdrawal problems, such as seizures that will not stop, hallucinations (hearing or seeing things that are not real), shaking, nervousness, and stomach or muscle cramps.

The Onfi drug label has been revised to add information about the risk for serious skin reactions to the Warnings and Precautions section and to the Medication Guide.

The revision reads as follows:

Serious Dermatological Reactions
Serious skin reactions, including Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN), have been reported with ONFI in both children and adults during the post-marketing period. Patients should be closely monitored for signs or symptoms of SJS/TEN, especially during the first 8 weeks of treatment initiation or when re-introducing therapy. ONFI should be discontinued at the first sign of rash, unless the rash is clearly not drug-related. If signs or symptoms suggest SJS/TEN, use of this drug should not be resumed and alternative therapy should be considered.

And so, it is with great anticipation and hope that we will be able to begin Calvin on a medicinal cannabis therapy soon, perhaps just after the turn of the new year. We are full steam ahead and I will be sure to apprise you of our progress.

happy birthday matt

Today my brother Matt turns fifty-four. For the past six years or so, since before he and his wife Stacey got married, they've been taking care of my mother who was diagnosed with Alzheimer's about a dozen years ago. As a result, Matt and I are living strangely parallel lives in that we are both primary caregivers for disabled loved ones. It's a tough road taking care of these family members, Calvin and my mom, who have great trouble communicating, must be bathed and toileted and fed and supervised, who are unsteady on their feet and who take loads of medications, Calvin for his epilepsy, Mom for her Alzheimer's.

Taking care of Calvin means I have a hard time getting away to see my mom, much less enjoy a vacation of my own. Matt and his wife, I imagine, feel equally trapped, not that it is impossible to vacation, just not easy.

So, happy birthday Matt. I hope you can get out for a long walk and a nice dinner and try to relax some. I'll be toasting you tonight.