“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.”
This story was submitted to Love What Matters by Heather. Follow her journey on Instagram. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more stories from Heather here:
All I Want For Christmas Is My Child To Smile In A Photo
Infantile Spasms Are Terrifying, But You Are Not Alone
Showers Are Not My Self-Care Time
Sometimes I Forget My ‘Normal’ Is Different From Yours
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