There are moments in a life with
diabetes where it becomes achingly apparent
just how different things are for our family. My son may get dropped off at the same school as your kid, but I'm betting you aren't being asked to sign a waiver saying that they aren't responsible for keeping your kid safe. My son may stand up with yours and receive a soccer trophy with your kid, but undoubtedly, he will not get to sit down and eat pizza with the rest of his team afterwards, because he is low from running around with them before the ceremony.
And when your kid finishes eating pizza and goes to play with his teammates, my son won't be able to do that either, because now, he needs that pizza.
These moments come and go. They are not the focus of our lives- they can't be. And after almost 7 months of them, they do not paralyze me with dread and anger and sadness quite as much as they used to. I expect them, to some degree. And I focus on the moments in between them, where he does get to be just like everyone else.
But there was just something about watching my four year old little boy laying back, glassy-eyed in his stroller as a parade of his favorite characters went by at Disney World, not even cracking a smile that crushed me. It wasn't that he didn't enjoy any of it, but as we watched his numbers barrel upward from an unfortunate 250 to an unwelcome 350 to just plain HIGH, it was clear that while he was present in there somewhere, it was Diabetes looking back at me. I hated it. I felt cheated. Angry for him.
One clean first aid station, a pod change, and one amazingly supportive husband later, we were somewhat back in business, looking at a slip of paper inviting Liam back to participate in Jedi training on stage with his favorite characters in an hour. His blood sugar was dropping, almost back to an acceptable range and he had definitely perked up, but the ketones were questionable since we were dealing with urine test strips, lagging behind on the data by a couple hours. We knew this may be his only chance to do it, so went ahead and made the call to let him go up and show Darth Vader what he's made of, and it was well worth it. He's still talking about it.
The rest of our trip was better on numbers. Definitely high, but not with any predictability. Chalk that up to theme park food and a mom who was maybe just a little bit overprotective and maybe hardly let that kids feet touch the ground after a day of stubborn lows the day we flew in. Who knows. It wasn't perfect, and it may not have been the experience I'd hoped he'd have, but he took away a lot of great memories. Diabetes may have made itself known, but it didn't get away with everything.
Aside from the highs, it was great spending a week with the grandparents away from (some of) the stressors of everyday life. It was great having extra hands everywhere and not having to cook anything, but it became clear that Diabetes does not take vacations. We didn't get many breaks, and neither did Liam. There was a lot of unfamiliar foods being weighed and dissected, a lot of restaurant server interrogations, a plethora of blood sugar checking. We were downright EXHAUSTED when we got home. And it was clear that big bad Diabetes found a Disney vacation no more sacred than a day of lounging around the house watching cartoons. Highs, lows, ketones, meltdowns from crashing numbers, meltdowns from skyrocketing numbers, (and maybe one or two meltdowns from being a four year old boy at Disney World thrown in there)...
It was hard. It was maybe one of the hardest times I've been through since his diagnosis. It was hard watching him have Diabetes at Disney World. It was hard realizing how much work it all is, even when we are on vacation. It was hard coming back home with the excitement of this trip behind us to see no end to the days exactly like those days stretched in front of us. We need a cure.
