“1 2 3 4 5 6…1 2 3 4 5 6…
1 2 3 4 5 6 7 8 9…
Every week I count like this as I sort his pills.
There’s lots of room for error when you count out 140 whole, 1/2, and 1/4 pills weekly.
Sometimes the pill numbers stay the same for a couple of weeks.
And then we change a dose or add something else. and I get used to counting new numbers.
I check for the blue pill, the orange pill, the tiny pill…every box with the correct number because messing up the dose is dangerous.
Once I finish sorting, I look at all the pill bottles for what needs refilling.
I shoot a message to neurology: ‘Hey, can you make sure you send an updated prescription to the pharmacy.’
I look to see what I can reorder—I try to reorder his meds as soon as I can because you never know when you’ll get a call from the pharmacy saying they’re having trouble getting something or that insurance did not approve a med that your child’s been taking for months.
It’s still too soon to reorder those meds, I jot a note on the whiteboard to try again Monday, and again on Wednesday if it still doesn’t let me.
While I’m there, I jot down on the calendar that we changed his g-tube button today and write down the date I’ll need to do that again.
I make another note on the whiteboard that I need to order a new one, so we have it on hand if something happens with the current one.
Wilson has a seizure in his chair.
I make sure he comes out all right before turning to the app to log it.
I note that it’s been a pretty good seizure day, unlike yesterday.
I look at the clock—time to administer the meds.
This is not how I imagined motherhood.
I imagined Friday night movies, not Friday night med sorting.
I imagined trying to get my child to try new foods, not measuring out the same keto formula ratios night after night.
I thought my calendar would be busy with school events and sports practices, not therapies and Medicaid calls.
I didn’t imagine motherhood resembling full-time nursing.
I love my child more than anything in the world—and I’m grateful for meds that make him more comfortable and work to keep him safe.
But I would be lying if I said I loved the medical management that is in our life.”
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