medical marijuana, please

Calvin suffers from medically refractory epilepsy, which means that his seizures are not fully controlled with the use of drugs or dietary therapy. He is not a surgical candidate (cannot benefit from neurosurgery) because we believe his seizures are generalized, involving the entire brain from onset. In the past seven years calvin has tried nine different anticonvulsant medications in various combinations. All have failed to fully control his seizures. He's tried two rigid dietary therapies (ketogenic and low glycemic diets) with no positive results and currently takes three powerful anticonvulsant drugs yet continues to have prolonged seizures, each lasting as long as eight minutes.

Calvin must endure many side effects from the anticonvulsant medications including, though not limited to: headache, nausea, indigestion, hyperactivity, ataxia, visual disturbances, dizziness, lack of coordination, lack of focus, irritability, memory problems, attention deficit, poor appetite, muscle fatigue, sleep disturbances, psychomotor hyperactivity, behavioral issues and gross developmental delays. It is difficult to know which of these side effects, such as the psychological ones, might prove to be permanent.

Medical marijuana hybrids with high CBD to THC ratios have proven in many cases to reduce and sometimes eliminate seizures in children with medically refractory catastrophic epilepsies such as Doose syndrome and Dravet syndrome, while causing little to no side effects.

Calvin's quality of life is negatively affected by his continued seizures and heinous side effects from the anticonvulsant drugs he must ingest every morning, noon and night. I believe that as long as he has seizures and suffers these side effects he will never reach his full potential, he will continue to have behavioral problems such as hyperactivity and he will never feel completely physically well.

Medical marijuana, please.

no words

Out in the open field alone the air feels damp and heavy, but with that weight comes some sense of comfort to my sadness, like the blanket that my father used to pull up over me before he kissed me goodnight then left a sliver of light through a crack in my bedroom door. Then, through open windows dressed in colorful drapes that at night dissolved into greys, I could hear the hush of wind through the trees as I do now, and smell the freshly cut grass that works its way between my wet toes like bits of ribbon.

Is it the silence that makes me think of him now? A giant standing tall and thin as some of the trees skirting the field. I remember the quiet that my dad and I shared on walks or while crouched and bent working in his garden together, then I think of the silence that Calvin and I share simply because he has no words to speak. But does he have thoughts that long to be formed into words?

Someone once said to me with teary eyes, “Sometimes I wish the good Lord would just take him,” and I winced as Calvin was described as flying across the sky. Winced, too, because I’ve wondered if it would be easier for me, for him, if he were gone. But not as an angel, I thought, as a star.

There is a sublime beauty in that there is no heaven, no hell, but rather this magnificent universe in which everything is divine. They had it right when they said, Ashes to ashes, dust to dust. One's eternal life exists in the minds of those they leave behind. I can almost be sure that is what my father believed and passed on to me, though without words. And Calvin, like a fleeting star, will never know those beliefs, those thoughts. He’ll simply be, and then one day, not be. And those of us left behind will breathe in the heavy, moist air perhaps smelling his sweet skin, feel the wind through our hair as if it were his fingers and hear his whimper faintly amongst the trees. In that way, like my dead father, he will live on.

But not now, while we share this world together. For now, we belong to each other, and the bright streaks across the night sky that we search for, marvel at, cherish and perhaps remember are glorious comets, star dust, ash. And they don't look down upon us. And they have no words.

photo by Michael Kolster

nurse please

In the past couple of weeks I’ve trained three new nurses having just finished training two others in the few months prior to that. The two recently trained nurses quit after their first day, and another—a very good nurse—is due to move to Colorado in a fortnight, leaving us with a single nurse who works just one day a week.

Nurse please.

I can’t quite figure out exactly why it is so unbelievably difficult lately to find someone to help take care of Calvin. Since Calvin began receiving in-home nursing services when he was two, it has been challenging at times, but we’ve always managed to land incredible nurses (with only a smattering of scary ones.) Perhaps the agency isn’t doing the best job at screening, isn’t telling the candidates what the job really entails. Perhaps when the nurses work with me and Calvin for a six to eight-hour shift they realize they aren’t up for it. They tell me that they want to do it but then they call to say they can’t. Maybe they aren’t strong enough. Perhaps they don’t have the patience. Maybe it isn’t challenging enough. Maybe it’s too challenging. Maybe I’m too much of a perfectionist and a control freak when it comes to caring for my child and that doesn't appeal to them. Maybe it's a combination of all of the above. Whatever it is, though, it sucks. It sucks to be left high and dry for weeks on end not being able to even scratch my nose with Calvin teetering on the opposite end of a short leash. It's particularly difficult when school is out and there are no activities for kids like Calvin—no soccer camp, no day camp, no play dates, no way to send him to a relative or a friend for vacation.

Nurse please.

And so these past few weeks since school let out I’ve been tested. I’ve strained my back, inadvertently had my eyeballs punched, my face scratched, my head bonked, my hair pulled, my sleep interrupted, my patience tried, my anxiety tested and my heart broken by several eight-minute long seizures. He’s a hard case, to be true. But you’d think at twenty-five bucks an hour to spend with an impossibly sweet, albeit sometimes hyper kid, there’d be more than a few decent nurses wanting to sign up.

Nurse please.

photo by Ann Anderson

unsaid and undone

The bitterest tears shed over graves are for words left unsaid and deeds left undone.

—Harriet Beecher Stowe

Quahog Bay, Maine

friday faves - the best exotic marigold hotel

From last July

I ran in from the rain, purchased one ticket, a small bag of buttered popcorn and a bottle of water. Once inside the small theater I stepped past rows of frizzy white-haired women and balding men. The house was quite full for a Tuesday matinee, but luckily my favorite couch in the front row was vacant. I’d made it just in time for the previews and finished my popcorn before the feature film began.

We were all there to see The Best Exotic Marigold Hotel. I’d heard nothing about the film but that it was worth watching. And so began my vicarious journey—through each of the characters’ eyes—into India. I traveled on a crowded bus laden with baggage strapped so tightly to its back that it looked like a laced roast beef. I jammed myself into the back of a tuk tuk weaving through throngs of colorful, dusty, beautiful people. If I’d been lucky enough to be watching in Smellorama my mouth would’ve surely been watering for curry and naan. I wanted to be THERE. And just as I was quietly lamenting my life’s imprisonment with my disabled son, my cabin fever, my inability to travel the world in the way I’d done in years past—to travel to India as I’d always wished—the soothing voice of Dame Judy Dench spoke to me and said:

This is a new and different world. The challenge is to cope with it ... and not just cope, but thrive.

I continued to ride the wave of scenes that passed before my watering eyes, to see beauty in the simplest things, the most basic gestures—a warm embrace, a spicy home-cooked meal, a kind face, a bustling market, a modest yet rewarding job, an evening stroll through the city, joyful children playing in the streets, the sound of a foreign language, the beauty of a different people.

As I watched these images blur across the screen and felt them move me inside, I tried to see—to understand—how my life with Calvin, with his seizures and drugs and gross limitations, might be rich and colorful. And though our days are monotonous and stream into each other as silently as osmosis, I know that he has changed my life—has changed me—in a way not unlike the culture shock of visiting a foreign country, but in a profoundly deep way that allows me to see the world from a completely different perspective, a less selfish one. And, as one of my favorite poems reads, Calvin “picks me up, turns me this way and that, and puts me down softly in a new place—always a new place.” For the most part, I think I’ve found ways to cope with this new and different world of life with Calvin, and I am constantly looking for ways to thrive—this blog being one—but it is indeed a challenge, most assuredly the greatest of my life.

And maybe one day, after years of being Calvin’s mother, nurse, physical and occupational therapist, doctor, coach and teacher, all that hard work will pay off and I’ll get to step out of this world and into another ... maybe even an exotic marigold world called India.

r and r

Enjoying some much needed r and r today. Happy Independence Day everyone.

photo by Connie Kolster

kolster united

Salty dogs under foot. Misty mornings. Cold drinks. I love yous. Riotous games. Growing teens. Sharp minds. Twilight boat rides. Scary movies and movies that make you laugh and cry. Live with Mike on WBOR. Family dinners. Bugles. Champagne, bourbon, beer and wine (not to worry.) Time together. Time alone. Hugs. Sharing Calvin. Frosty's donuts. Late night conversations. Sleeping in (for some.) Cheese. Humor. Most wonderful niece and nephews. Smart-ass brother-in-laws (who I adore.) Lovely (in every way) sister-in-laws. Gorgeous views no matter the weather. Hosts with the most: Jimmy and Poopsie. Triple lobster. Three more cherished days.