type1demystified.com

Not sure why tears are welling up in my eyes as I type, but they are.

So many emotions.

This does not become second nature. Being a pancreas outside of your body does not become normal. It will never be normal. New normal, old normal. Whatever.

It is not normal to wake up and worry if your son lived through the night.

It is not normal to breathe a sigh of relief when you hear him shut off his morning alarm.

It is not normal to wonder if he made the drive without treating a low.

It is not normal to watch my 20-year-old son with panic in his eyes as he realizes his number is dropping faster than he can catch it.

It is not normal to check your blood sugar every time you eat.

It is not normal to rely on faulty technology to make life-and-death decisions.

It is not normal to think about how heat might affect your numbers.

It is not normal to troubleshoot why insulin would not be working correctly.

It is not normal to fight with insurance to get insulin approved.

None of this is normal.

But we get through it. Every day. Normal or not. We have to.

My baby boy is nineteen. His diabetes is fifteen today.

I couldn’t write yesterday. Couldn’t fully get in to words what I want to convey after 15 long years of kicking diabetes’ ass.

Today I can write.

I want to explain what living with this uninvited guest has been like these last 15 years.

It’s rude.

When you just want to ‘be’ it is there yelling at the top of its lungs seeking more attention.

My son can be mid conversation about something really close to his heart, almost bringing himself to tears (you know the teenage years) and here comes diabetes screaming, “I don’t give a fuck about your breakup, pay attention to ME. I need my sugar checked or I may go so low you pass out. Fuck your feelings, I’m all you need to worry about.”

Rude.

My son can be all packed and ready to go on vacation. Car loaded. Friends all hyped for their trip. Car started. Music blasting. Oh wait, here comes diabetes. “Pay attention to me! I know you’re all excited about the trip but I’m gonna go low RIGHT NOW so you all can sit and wait until I’m tended to.”

Rude.

My son can be tired from working 2 full days in a hot kitchen at a restaurant and looking forward to sleeping in. Ha! Diabetes laughs.

“You’re not sleeping in! Don’t you know I’m gonna need some sugar at 4am to combat a low because you worked so hard the day before!”

Or

“Don’t you know I’m gonna need a correction from the high blood sugar from the stress of working so hard the day before!”

Rude.

So yeah 15 years of living with this asshole is grating. Diabetes is an asshole. Always was and always will be.

Rude ass.

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.