7.06.2021

too good to be true

These are the kinds of days I dream of, but alas, none of the following is true:

this morning, to my utter disbelief, calvin said the word, "mama" for the second time in his life, having first said it when he was just eighteen months old, before the seizures and the drugs meant to stop them began. it really came out of nowhere. hearing him say it was nothing less than astonishing. then, he proceeded to get out of bed all by himself; we've been working on that skill for awhile and it seems to have finally paid off. his balance was so good we didn't have to spot him coming down the stairs, and when he sat down for breakfast, he used a spoon to eat his yogurt without any help at all! moreover, he didn't cough or sputter while eating or drinking, nor did he toss his sippy cup on the floor like a toddler; he set it right down on the table like we've been teaching him for fifteen years to do.

after breakfast, he clearly signed "all done," brushed his teeth pretty well by himself, and got into his johnny jump up without much help at all. the day started out as one i'd describe as too good to be true.

recently, we stopped giving calvin his only pharmaceutical, keppra. maybe that is why he is so calm. he even sat in michael's lap for a good long time while being read his favorite board book, barnyard dance. for the good part of an hour, calvin played happily with his toys in the corner of the room. not once did he try to bite the bookcase or stare at the sun, so we were able to leave the bookcase uncovered and the shades up, enjoying the morning light streaming through the windows.

the reason we stopped giving calvin his keppra is that we wondered if perhaps it might be exacerbating his seizures. since his last dose, he hasn't had any signs of looming ones—no eye poking, no shrieking, no manic episodes, no intensity, no restlessness, no spaciness, no nothing. just a calm, happy kid with excellent balance and focus. he stopped drooling, too! it's unbelievable. 

this morning, the weather was gorgeous, sunny and in the low seventies, so we went outside. i was amazed that calvin walked independently around the yard touching the flowers, trees and shrubs without trying to eat them, then plopped himself down on the grass to rest. not once did he crane his neck to stare at the sun or put handfuls of twigs, mulch or grass into his mouth. this allowed me to get a bit of pruning done, knowing he was safe without my constant watch. he even pet smellie who came up and laid down next to him.

perhaps the most striking and welcome observation of the day has been how happy, calm, and lucid calvin seems. perhaps that's due to the lack of drug in his system or the absence of seizures. in any case, i'll take it!

And though none of what I just wrote is true, I'll keep on dreaming.

Photos by Michael Kolster

5 comments:

  1. Replies
    1. sorry (Tim?) none of that actually happened. sigh.

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  2. Weird, wonderful, wacky, all of it. We can only imagine, right?

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  3. What ever would I ever do with the better part of an hour if my girl would play nicely during it???

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    1. dear andie, I love hearing from you. I am so sorry to know your child is like mine, but somehow it is comforting to know I am not along. I love your words. where are you?

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