Years ago I lost my religion. Had I not then, however, there's little doubt I'd have lost it raising a disabled child with a chronic condition as heinous as epilepsy—just one of the many things in life, besides starving children and war and genocide and massacres in churches, that proves to me there is no merciful God in the heavens.
At three-fifty this morning, Calvin suffered another grand mal, bringing his two-week total—not including complex partial seizures—to five after having enjoyed nearly an entire month having had only two. Michael is on his way home from Boston today, so I had to go it alone.
Before the seizure, I got up more than a handful of times to lay Calvin back down in his bed and give him some of my homemade THCA tincture aiming to thwart a somewhat-anticipated seizure. I awoke later to the blood-curdling shriek that usually announces the ordeal. I made sure his head, hands and feet weren't smacking the bed. I yanked off his socks and rubbed frankincense on the soles of his feet. When it was over, I gave him some THC. Then I gave him his benzodiazepine early. I chased them both with syringes of water. I changed a soaking diaper. I got in next to him. He fell asleep. He woke minutes later having wet himself and his bed. I changed him again. Every few minutes he kept sitting up, banging the bed, working his fingers in a frenzy in front of his face, his heart beating furiously in his chest.
He's sitting in front of me now and I hardly recognize him, the way he juts his jaw, purses his lips and clenches his teeth creating a phantom dimple on the side of his cheek that I only see in the hours before a seizure. He's fingering like mad. I feel bad for him and yet irritated and slightly repulsed.
I wonder how I can keep this up. Keep following him around the house. Keep running for him and lunging to prevent him from a fall whenever he gets into a stand. Keep thwarting his eye-poking and sun-staring and shirt-biting and head-banging. Keep changing his diapers and hearing his shrieks and chopping his food and wiping his drool and mopping his juice and laying him down and picking him up and holding his hand and giving him supps and watching him seize and never getting enough sleep, never able to finish any endeavor.
I wrote to Michael this morning telling him what happened. I told him I was feeling defeated. No doubt he feels helpless. All I want to do is go back to sleep.
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| Photo by Michael Kolster |
The stream of consciousness matches my own silently spoken in my head. Fourteen years.
ReplyDeleteThe lose of two lives. Why? Why did it have to be this way for us?
ReplyDeleteYou'll keep doing it because that's what we do. I'm loving on you from afar. We'll keep doing, even though it sucks. We might have lost our religion, but grace exists. It does and it descends just when we can't take it one more second. Happy Fucking National Family Caregivers Month, Christy. I love you so much.
ReplyDeletewhat can i do to help, Christy?
ReplyDeleteJoining Elizabeth in happy Fucking National Caregivers Month wishes, not that I knew it was that month, nor do I have any idea after three decades how we keep doing it. But you write it well.
ReplyDeleteChristy, this is heartbreaking, utterly so. Your story of such unrelenting demands to endure and love and care for Calvin, while managing a storm of conflicting emotions overwhelms me. I have no words adequate to what you must be going through when Michael is away, and even when you both are there, when Calvin spirals into a series of seizures. But YOU have the words. This particular essay powerfully laid down your burden with just the right mix of simple, emotionally fraught words and structure—I'm thinking particularly of the next to the final paragraph. You've given me something in your struggle to provide for Calvin. It's your gift of grace to me, like each sunrise morning is a gift to me at age 79.
ReplyDeleteI'm sorry. Sorry that it sucks. Sorry that Calvin has to suffer like this. Sorry that you have to take care of him. It's beyond hard.
ReplyDeleteReading this from my sofa where I am both monitoring my son watch the Wiz and wondering how you- how we - do it too. My son first began seizing at age 3. His beautiful life as well as mine, shattered that morning with a severe tongue biting horrible grand mal. The days that followed of missed lumbar punctures, fruitless MRIs and eeg wires glued to his head. Then the years of watching helplessly as multiple other types of seizures, sometimes hundreds per day fried his brain into the sometimes here sometimes gone state we live in now. Despite being a critical care nurse and being able to slip benzos directly into his veins if necessary and to navigate neurology like an old shoe, it is no easier to watch. Four other children do without much of my attention as do my husband and my own life. I don't know if it helps you, my sister in this, but you are not alone. I am no more capable of giving up on him than you are with yours. I don't even threaten it in my own mind very often now, but rather obsess over what happens to him when I am no longer here to help him breathe and tweak his medications as we all must do because of the hateful tolerance. The epileptic entity that is the enemy developed almost cunning ability to adapts and then not respond to our interventions. I'd wish you strength and love but you have that inside. We get that from our maternal tiger. Here's to yours! I just wish had the tools to cure them and to stop this hell on earth.
ReplyDeleteBtw don't chase the CBD or THCA with water. A lot of successful absorption comes through mouth and mucous membranes
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