Non-Stop

There’s a song in TheKid’s favorite musical, Hamilton, called “Non-Stop.”

That’s what it’s like to be a caregiver. Non-stop. As the song says, “every second you’re alive, every second you’re alive…”

But as the song also says, “Look around, look around! How lucky we are to be alive right now.” 10 years ago the fight was very different. 100 years ago, there wasn’t a fight at all. Insulin wasn’t discovered for use in diabetics until the 1920s.

There’s always that underlying worry about diabetes. A diabetic (and those who care for him) doesn’t get time off. Every meal, every snack, every physical activity, even the timing of a bath or shower: diabetes factors in for all of these.

When I wake up in the middle of the night, I check my phone to see how his blood sugar is. When I’m out and about during the day, I do the same–before I get into the car to go somewhere, I make sure everything is OK. Because if it’s not, I might have to be ready to drop everything and pick him up at school. It takes a lot for me to go somewhere if it’s over 20 minutes away from school.

Copyright 2016 Barb Szyszkiewicz. All rights reserved.

Copyright 2016 Barb Szyszkiewicz. All rights reserved.

About once a week I sit down at the kitchen table and fill insulin cartridges. I call myself the Equipment Manager. I rotate the inventory when new test strips, infusion sets and CGM sensors are delivered, because all these things have expiration dates.

I don’t just pack his lunch on school days; I check inventory in his bag of tricks: extra pump cartridge and infusion set, insulin pen with needles just in case, extra meter, Smarties, juice box, Skittles, peanut butter crackers, Gatorade for soccer.

TheKid invited a couple of friends to sleep over last night. I don’t know what he ate, but I’ve been up since before 5 (again) battling the high blood sugar that resulted. Or maybe the pump site is going bad. Who knows?

It’s always something. Even for a kid with generally good diabetes control and an awesome A1C.

But we do what we can do keep him healthy.

Non-stop.

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This month I’m joining all the cool kids in the #Write31Days adventure! I didn’t pick a keyword or a theme, because just getting something written for all 31 days is challenge enough for me right now.
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Blessings for Caregivers

I’m pretty sure that God puts certain people in our paths for two reasons:

  • He wants us to bless them
  • He wants them to bless us

Sometimes, it’s both.

Until I “met” Jeannie Ewing through her blog, Love Alone Creates, and her work at CatholicMom.com, I never considered myself a caregiver.

What was I thinking? I have a teenager with Type 1 Diabetes. While he’s quite independent and generally adept at handling most of his own care, Hubs and I are still, most definitely, his caregivers.

That means we wake him up in the night to give him juice when he sleeps through his continuous glucose monitor’s alarm. (Last night, 5 times. That’s unusual. But it can definitely be frustrating and exhausting.) It means we measure his food and calculate the carbs on every recipe. It means we cannot let him leave the house without his backpack containing insulin, a juice box, and emergency glucose supplies. Ever. It means every-3-months visits to the endocrinologist and the dread of ever having to repeat the emergency-room episode just before Thanksgiving 2013 when we learned his diagnosis and just how sick he was.

navigating deep watersJeannie has written the book on caregiving–more accurately, the workbook on caregiving, and I’m going to be working through that book. It’s called Navigating Deep Waters: Meditations for Caregivers. She speaks from her own experience as a mom of two young daughters with special needs: one child on the autism spectrum and one with a craniofacial disorder called Apert Syndrome.

Jeannie is wise beyond her years and she has a lot to teach me. She recently shared one of her articles I’m going to keep handy and reread often: 5 Ways I’ve Changed Since Becoming a Special Needs Mom.

You don’t have to be a caregiver, or a special-needs mom, to appreciate the wisdom in that article. But if you are, you’ll understand just how priceless a gift Jeannie has given you by taking the time to write and share from her experience.

Please note that the link to Jeannie’s book at Amazon is an affiliate link. Your purchase of this book through my Amazon link costs you nothing extra but helps support expenses associated with this website.