never ever give up

This morning I came to the end of my daily journal for 2012. I've been keeping one every year since 2006, which is when Calvin was diagnosed with epilepsy. In it I write things like how Calvin slept, what his mood and balance were like, the number, size and consistency of his bowel movements, whether he took a nap, how his appetite seemed, and how frazzled I became (which is usually evidenced by a crude drawing of my squiggled face.) When he suffers a seizure I highlight the date with an orange marker then pen in a large black dot followed by the time, length and description of the seizure. I do the same on my calender, with the months' seizures tallied at the bottom, again in bright orange highlighter and black Sharpie.

This year Calvin had a total of sixteen observed seizures. I use the word observed since it is hard to know whether Calvin might be having silent nocturnal seizures or whether his hysterical laughter, eye poking, screaming or space-outs are seizures or just behavioral manifestations of physical discomfort. We don't know because he can't tell us. Last year he suffered sixty-eight fits and the year before, perhaps twice that. In 2008 he endured 160 seizures, most of them three-minute grand mal, while on high doses of three anticonvulsant drugs plus a rigorous, exacting diet. The treatments made him a complete zombie. He didn't smile for nearly two years. I thought he might never again.

I share these numbers with a mix of feelings. On the one hand I am pleased that the number of Calvin's seizures has decreased, while on the other, one seizure is one too many and the cost of the drugs that he has to take that don't completely stop his seizures is monumental. But I am also painfully aware that there are many children and adults out there—my friends' children—who suffer relentless seizures, some a few times each day, others dozens—even hundreds—every day and night of their precious, painful lives.

I woke up this morning and did a little surfing on Facebook, though I'm pulling away from that vortex a bit. While sitting in the dark, the glow of my laptop shining on my face, I saw a photo of my friend Martha's daughter, Lisbeth. She had two black eyes. I didn't even need to read what had happened. I knew she'd had a bad fall as the result of a seizure ... a thirteen minute grand mal seizure. I did go on to read that they feared her nose might be broken. A friend commented below the photo:

Her beauty shines through it all.

Then her mother wrote:

She has a Spirit of Steel, Bless Her.

A single seizure is one too many for anyone to endure. And though I am thankful that Calvin is having fewer, at least for now, I'll be keeping these children in my thoughts:

Lisbeth, Sophie, Olivia, Margot, Savannah, Leland, Hassna, Zach, Kaylee Marie, Lindsey, Luella, Elija, Twyla, Logan, Lily and all of my other new friends' children who suffer from epilepsy. And to your parents: never, ever give up.

Lisbeth, on her way home from the hospital after one of her bad seizure injuries

1 comment:

  1. Thank you for your thoughts. I used to keep a daily journal and would tally, even, Sophie's infantile spasms -- hundreds and hundreds per day. I remember, too, the atonic drops when she was five or six years old -- 75-100 a day. I stopped tallying long ago and felt much relief when I did. On one of the several ambulance drives we went on back in the day, I remember the paramedic asking me when her last seizure was -- and I wanted to laugh and laugh. It's weird to me how my standards for what a "good" day might be --