type1demystified.com

Fourteen feels like a lifetime, and yet it’s a lifetime for which I hope.

Storytime.

I was talking to my daughter without Type 1 the other day. She is 21 months younger than her brother. I was telling her a cute story from when she was in Kindergarten.

She was in a half-day morning program that got her home around 11:35 am. She rode the bus to and from school like a big girl. As a parent of a little one, we were obligated to stand at the end of the driveway to get our babies off the bus. One particular morning the bus rolled up and opened its door for me to greet my daughter, but she was not there to greet me. Usually, when the doors opened, she did not step off. Usually, she was right there, a smile on her face, waiting for the doors to open.

On this day, she was not there.

I peered through the doors of the bus, said hello to the bus driver while simultaneously seeing my daughter, my 5-year-old, with her body leaning forward, forehead pressed against the seat in front of her and eyes closed. I could not tell if she was breathing. She looked asleep. I smiled, and said aloud, “Oh my poor baby is so tired. Look at her,” as I quietly whispered to my daughter that she was home and to, “Come to mama.”

I was robbed of these sweet moments with my son. Sleeping at odd times, laying down in the grass for too long, not waking up when called all elicited feelings of fear in me. I was robbed of moments like, “Oh he’s sleeping late, glad we all slept in,” or “He’s so quiet downstairs, he’s being a good boy,” or “Look at him laying with the dogs in the grass.” Everyone one of these moments was followed by a shake to wake him up *sometimes a loud scream of his name) and a finger prick.

Every. Single. One.

Sure I have lots of sweet moments with my son, too many to count, but none of them involved him sleeping or resting peacefully.

Having diabetes is an all-encompassing, ever-present, existence and at the same time, it’s not.

My son has diabetes but it doesn’t have him. And I got my son. Fourteen deep.

Hey, diabetes. For old times’ sake. Fuck you.

Thirteen years of this shit.

My boy was 4 when diabetes came into our home and invaded our lives, hearts, and heads. We counted carbs, dosed insulin, cried, screamed, broke down, counted more carbs, made pin cushions out of arms and legs and belly and moved on.

We’ve been moving on for 13 years. We moved past crappy teachers to teachers that just got it. We’ve moved past strangers that said really dumb things, to others that hugged us from a distance. We’ve moved past family friends that told us insulin would kill him, to friends that became family. We’ve moved past bullies to the protectors. We’ve moved past 10 shots a day to changing a pump every 3 days. We’ve moved past over 15 blood sugar checks a day to changing a CGM every 10 days. We’ve moved past tears, confusion, hurt, and anger to wherever we are now.

We move past it all to keep moving forward. We’ve moved past riding bikes to getting a license. We’ve moved past being the passenger to being the driver. We’ve moved past counting on everyone to being the one to be counted on. We’ve moved past hanging out to dating. We’ve moved past terror to we got this. We’ve moved past waiting to we are not waiting anymore.

4,745 days of being proud. 4,745 days of wishing it were me. Here I stay. There is no moving past that.

Thirteen years of this shit. 4,745 days of moving past it.

Type 1 diabetes is never easy. It’s not always hard, but it is always there. Day. Night. Work. Play. Sleep. Awake.

Pandemic.

Yeah, Type 1 diabetes doesn’t go away in a pandemic either. It doesn’t care that we have other things to worry about. It really is just so rude. I mean, we are in a pandemic for goodness sake, can’t you just take a back seat for once.

But this pandemic got me thinking. It really brought me back to my original question of…Am I parenting my child or am I parenting the diabetes? Back when my son was younger, he was diagnosed at 4, I had to train my brain to say yes and no to him based on what I would say to any other 4 year old. If he wanted to play outside in our yard by himself, I had to think what I would do if he was a 4 year old without diabetes. This way of thinking has served us well over the years.

In comes the pandemic.

My son is now 16, almost 17, and he works. Like any other teenage boy he has a great part-time job that helps support his Wawa habit. His job stayed open during the lockdown and we had to make some decisions. Should he stay at work? Should he quit? So we had to think.

What would I do if he did not have diabetes?

I decided he could keep his job. He would take all precautions seriously, be vigilant with hand washing, leaving his clothes in the washer before heading to the shower after a shift, and being very in tune with his health and how he was feeling from day to day.

Diabetes is not going away. Hopefully he will live a long productive life with diabetes. I keep coming back to the quote of giving our children roots and wings. By allowing my son to continue working in spite of a pandemic in spite of having diabetes I’m giving him the roots and the knowledge of how to handle really scary times with diabetes.

Hopefully those roots will serve him well when he is flying high out from under my roof, which to this sad mama, is happening sooner than later.