these are the days

It’s more of a gasp than a cry—the sound my son Calvin makes at the start of a seizure, which usually rips me out of sleep to find him shuddering in his sheets, his eyes peeled open and yet blind to the world.

After Michael and I unlatch and lower Calvin’s safety bed panel, I grab the syringe of THC cannabis rescue med then, gently holding his jaw, I squirt a tiny bit into his mouth and rub it into his gums. While he spasms, as best I can I scoot him back from the wooden lip of his bed so that he doesn’t bust a toe or jam a finger, his limbs jerking in quick, rhythmic waves. Within a minute or so, the spasms stop and my boy begins to whimper and shiver like a cold, wet pup. I have no idea if he remembers any of it. I hope not. I also hope that the cannabis oil will continue to thwart the clusters of seizures.

In the days between these seizures, I’m apt to partially forget about the actual despair they spark; the complex, gloomy prospect that he’ll—we’ll—likely suffer a lifetime of them is soon displaced by the simple fear and dread of the next one rolling our way.

In the time between these seizures, Calvin has some good days and some not so good days, but as one cute brown-skinned boy, who four years ago was in Calvin’s first grade class, said to me recently, “It looks like Calvin is growing up so fast lately.”

I took his sweet and insightful comment to mean that he’s noticed Calvin progress, stand taller and walk better, and the boy is right and kind to have mentioned it to me.

These are the days when I forget my despair.

Others are noticing Calvin’s gains, too: his bus driver, as she sees him step up the steep stairs all by himself; the staff at the grocer who see him amble down the aisles, at times without holding our hands; our neighbors, who watch Calvin teeter, sometimes happily, down the sidewalk with little help; Woody, who saw a smiling Calvin seesaw in his rocking chair better than either of us have ever seen him do.

Yesterday, as Michael and I walked Calvin across campus to downtown for a second day in a row, a little girl with light olive skin and sprigs of golden curls emerged from her mother’s parked car and crossed the street to join us.

“Hi Calvin!” she said, waving and smiling as she approached.

She reminded me that she is in Mr. Shea’s class, Calvin’s mainstream fifth grade class, which I visited last week. I thanked her for her kindness and for going out of her way to come and say hello. As she got back into her mother’s car I waved, then held my hand over my heart and smiled at her mother as they drove off.

These are the days when I forget my despair.

A reader wrote to me this morning upon having seen yesterday’s post, sunday stroll:

I have a question. This picture made me smile. He looks like a happy boy with an obviously loving dad. When I see differently-abled kids and their parents out, I frequently have the same reaction—a smile at the child and then the parents. But then I worry that this type of reaction comes off as condescending or patronizing. After all, did I smile at ALL the parents and children I just passed? I want to be respectful, but I also want to share my awe and appreciation for the hard job they've been given, and well, I like to smile at kids. I don't know. Do you have any thoughts? I hope this question itself isn't intrusive. —Abby

I answered:

dear abby, wow! i am so grateful for your thoughtful question, and i know just what you mean. i've had the same thoughts about smiling at other disabled people. my husband and i sop up smiles from others. never does a smile for calvin and for us go by unnoticed or unappreciated. we always say, "did you see that person smile at us?" it is a wonderful feeling. it is a feeling of validation, that we have a place in a world which often marginalizes us and turns away. thank you. thank you. thank you.

These are the days when I forget my despair.

Photo by Charlie Muller