sweet spots (cbd and others)

For awhile, I've wondered why the all-time most-read post on my blog is one called day five hundred. To my surprise, folks continue to find it amid the 1,843 posts I've published since starting my blog over eight years ago. In pondering the question, I reread the post and came to the conclusion that readers, perhaps mislead by its title, were and are interested in knowing how my son, Calvin, went five-hundred days without a seizure. In actuality, when I wrote the post Calvin had been free only from conscious-onset daytime grand mals. In other words, he was not seizure-free because he was still having them at night.

In revisiting the two-year-old post, I thought it prudent to give readers an update. Calvin continues to be virtually free from daytime grand mal seizures. I say "virtually," because in November, he had some sort of event at school which the ed techs were unsure of. When asked, they described attributes of both grand mal and partial complex seizures, thus confounding me. Suffice to say, nearly all Calvin's grand mal seizures emerge at night, most often in the wee hours of sleep.

Of note now is the fact that Calvin is having the same or fewer seizures as compared with recent years despite, a) being in the thralls of puberty, b) having finally weaned the benzodiazepine (Onfi, aka clobazam) he was on for years, c) taking less Keppra, and d) taking half the amount of my homemade THCA cannabis oil that I began giving him five years ago. What's different is the addition of Palmetto Harmony CBD oil I began giving him last June. At sixty pounds, Calvin's daily intake of the oil is 75 milligrams roughly divided into two doses. At this dose we have not seen any negative side effects attributable to CBD. In fact, he is sleeping a bit better, seems less agitated, is having far fewer partial complex seizures and very slightly fewer grand mals. Of late, his days between seizures have been mostly calm and filled with smiles and moments sitting on our laps sopping up hugs and kisses. When I've given him extra CBD in the wake of partial seizures, he hasn't gone on to have more, so I can be fairly sure the Palmetto Harmony CBD oil is not a seizure trigger for him.

Compared with other children his weight, Calvin may be taking more CBD, but he has a history of requiring high doses of medications to achieve any semblance of efficacy. I keep in my mind—and heart—Charlotte Figi, who is Calvin's size and whose mother Paige told me takes nearly three times the amount of CBD Calvin is currently taking. I also consider the children who are taking way more CBD—as much as 1,300 mgs per day—in the form of the new plant-based pharmaceutical, Epidiolex.

My hope for the new year is that we will find a CBD sweet spot which limits or eliminates Calvin's seizures without any adverse side effects—in essence, I hope we find a silver CBD bullet in this golden potion. If we do, I'd love to try reducing Calvin's THCA and Keppra.

In-between seizure days, I am finding time to get out of the house to enjoy my own sweet spots—rivers, beaches, forests, seas—which keep me healthy and mostly sane. I've been afforded such luxury because, after a three-month hiatus, Calvin's kick-ass nurse, Rita, recently came back to work for us via a better and more ethical agency than the one she left. Rita job-shares her part-time gig with a second nurse, Sue, who is exhibiting similar kick-ass characteristics. In addition, we have Mary, Calvin's former ed tech, who also provides us respite, and who has been kicking major ass for years as Calvin's aide. All three women are a joy to have in the sweet spot we call home.

So, in 2019, I'll continue my search for sweet spots, and I'll let you know if and when I unearth them.

on jesus, walls, alms and calvin

At four-twenty this morning, only three days after his last one, Calvin suffered a grand mal seizure. It was a typical one for him, self-limiting with full-body convulsions lasting ninety seconds. After it was over I wiped the blood trickling out of the corner of his mouth from having bitten his cheek or tongue. Watching my son seize is never easy, and would no doubt be terrifying, perhaps even repulsive, for most onlookers to witness, or for any parent to see their own child suddenly suffer. I think about other children who have their seizures at school. I wonder if they're made fun of behind their backs by other kids. I wonder if they are stigmatized and shunned. I wonder if they are thought of as alien in some ways. I wonder if they're walled-off from other kids; no doubt their epilepsy and its impact grossly misunderstood and feared.

On seizure days if Calvin rests, I often read the news and pop in and out of social media. The headlines lately seem to be all about the government shutdown over funding for a border wall. Apparently, Trump supporters are crowd-sourcing its funding, having raised in recent days seventeen-million dollars for the project. The notion sickens me, especially in this season of charity celebrating the birth of Jesus. I'm disheartened by the fearmongering and demonization of good and innocent people desperate in their attempts to find and make a better life here. If not descendants of slaves or indigenous peoples, we Americans came from immigrants. We mustn't be fooled by politicians eager to divide us for personal or political gain. Humans are the same the world over; if not for the accident of birth, we might be fleeing wrecked homelands, too. What claim have we to this land anyway?

In the days between Calvin's seizures, I came across two short pieces most worthy of reading this holiday season, one by a Muslim who attended Catholic high school in California, and another by the author of the outstanding book, The New Jim Crow: Mass Incarceration in the Age of Colorblindness. The first work expresses its author's love and reverence for Jesus. The second explores citizenship and immigration. The two pieces, which make for a lovely pairing, offer compelling arguments for welcoming immigrants and refugees.

Though raised in a Catholic family, I'm not Christian. Nonetheless, I embrace what the Bible says Jesus preached: unconditional love, compassion, acceptance, charity for the needy, the poor, the afflicted. It upsets me to see and hear so-called Christians maligning other decent human beings. It's hard to see folks hell-bent on erecting a wall to divide us from those who need and bleed the same as we. Like us, migrants are laborers. Like us, they love their children. They want to live a good life, free from poverty, exploitation, oppression, violence. And, yes, they pay billions in taxes. Like immigrants are to some Americans, my boy Calvin is misunderstood and derided by the ignorant for his alleged burden on society. But like Jesus, Calvin embodies the best of humanity, teaching us unconditional love, kindness, charity, acceptance, humility. I ponder the infirm in search of treatment, imagine the migrant seeking refuge. I ask myself and others, what would Jesus do? I doubt he'd champion a fund to build a wall between his people.

In this season of getting and giving, I'm keenly aware of and most grateful for the accident of birth in a nation of plenty to parents who were not poor, disenfranchised or oppressed. I'm thankful for our health, our home, our community, for my husband's gainful employment, for generosity, safety, love, brotherhood and sisterhood. Despite Calvin's suffering and burden, I'm grateful for his purity and affection, and for what his being stirs in me to be and do—to give alms to the poor, the hungry, the homeless, and to welcome those who need safe haven, building bridges, not walls, between the world's good people.

nostalgic christmas

Alone in the house with Calvin and Nellie while Michael spends a couple of hours at the studio. Silent Night is playing on the radio. For the first time in years I feel an emptiness, its source the absence of my mom and dad. I long ago lost my religion, but I sometimes still enjoy a few holiday traditions I did with them as a kid.

While feeding Calvin grapes I remember Christmases of my childhood, recall Dad goofing off in his new orange track suit, and making funny faces while carving the bird. Even the feeling of disappointment when certain gifts given to me weren't exactly how or what I'd hoped feels nostalgic. I wish Mom and Dad were still around. Wish they'd had a chance to know Calvin. Perhaps Dad would bounce him on his knees until he giggled uncontrollably. Maybe Mom would trap Calvin in her larger-than-life hugs, a flour-dusted apron tied around her ample waist. We'd sit around the table making jokes, passing dinner rolls and gravy. I've little doubt that Dad and Michael would've been famous friends, working in the kitchen, cleaning up the mess together. Michael's family eggnog would have been a big hit with Mom and Dad, though especially Dad who had a wicked love of sweets.

But they're both gone, Dad for some twenty-two years and Mom for a handful. Instead, I've got memories of them seared into my head—the smell of hot apple cider and of breakfast sausages and French toast wafting through the old brick ranch house. Holiday music coming from the radio atop the fridge. The huge tree all lit up and tinseled. The warmth of Mom's smile and embrace. The relentless razzing Dad gave each of us. How nice to see him when he wasn't working, though Mom, who was a homemaker for eight, never really seemed to quit.

Yes, these carols so familiar spark in me a visceral poignancy, and I'm overcome with a loneliness I know isn't uncommon during the holidays. But Michael will soon be home. Then friends will be arriving after sundown. Eggnog with bourbon and rum will be drunk. Savory meats will be carved and eaten. Wine will flow. Cake will be served with ice cream. Mom and Dad won't be at the table, but my own family will be, and the house will be full of love and laughter. And Calvin, whose days are virtual carbon copies of each other, won't know he's missing anything.

Mom and Dad, Harriette and Don

a week in photos: saturday

a week in photos: friday

a week in photos: thursday

a week in photos: wednesday