inklingfair So this is January. We were caught blindsided by Daniel’s sudden seizure the week after our family reunion in NV, but perhaps we just refused to see it coming. The signs were certainly there: He recently seemed ready for toilet training because he’d wake up in the middle of the night wanting to pee but seemed to hate getting wet in his sleep. We were skipping naptimes and sleeping later, and perhaps the exhaustion of the trip hit when we least expected it. And then of course, the other signs, of him possibly being on the spectrum. (One doesn’t cause the other, but they do often occur together.)
We’re still processing things, all the while working, going through Amy’s exams, finding out Amy has myopia, too, like me, remembering Daniel’s doses, going to one clinic after another, doing paperwork. I’ve become more sensitive to Amy’s moods, careful lest she feels like the Wheeze to Daniel’s Caroline*. Josh and I have been playing and reading with the children more, going to church and the park together — which, without the specter of another episode anytime, would have been trite and cliché.
Life does go on, just quietly, irreversibly changed. Last Friday evening, I was with him when he started having his second seizure. Seeing Daniel, rolled on his side trembling uncontrollably, a faint bluish hue on his skin, vomiting then crying — it made me feel strangely cold and calm. I held his head and said, “It’s okay, it’s okay”, over and over and over. I wiped him down and soothed him to sleep. I called his doctor. That afternoon, I had put him to sleep for his EEG and watched the technician attach the 20+ electrodes to his head, track his brain waves on a monitor, and pulse a flashing light over his eyelids. Josh had waited with me until we were asked to wake him up, and as he did, he pulled off most of the electrodes and cried sleepily. I had hoped he wouldn’t have a seizure after his sleep deprivation, but he woke from his nap too soon and didn’t want to sleep again.
We’ve had some wins, though. He hates having his hair cut, so I do it in the shower when he’s distracted by the water, or while he’s asleep. He hates having his teeth brushed, so we got him an electric toothbrush, which he loves… I think? The mask aversion, we’re working on it, but it’s going to take a while. As for Amy, Josh and I rode with her in QC for the very first time, and she was marvelous. A bit more practice, but she’s a natural on two wheels. We’re also getting her glasses today, hopefully, after she’s seen by the pedia-ophthalmologist. We walk on.
I’m reminded of the first gospel I heard this year, about the paralyzed man lowered down by his friends through the roof that Jesus might see him. Jesus said, “Friend, your sins are forgiven,” before he even says “Get up.” I used to think this was strange, because wouldn’t the foremost need of a paralyzed man be to move? But perhaps Jesus saw how he was lonely, hurting, guilty — of what, we never know and Jesus doesn’t bring it up. And that what he needed most was to be whole in spirit before he could be whole in body.
But I have calmed and quieted myself,
I am like a weaned child with its mother;
like a weaned child I am content.
(Psalm 131:2)
This storm will pass.
*From Jacob Have I Loved by Katherine Paterson
Tarbatness Lighthouse by aldon
