Trey was born a fighter. Diagnosed with a significant Ventricular Septal Defect (a big hole in his heart) shortly after birth, hospital visits and medical specialists have always been the norm for him. But he fought that tiny little broken heart out his first few years and against all odds managed to fight off the open heart surgery we were told he would eventually have to have. He won enough of those tiny battles to finally establish his position on the pediatric growth chart and when he was 4 years old, the hole had finally shrunk enough for the surgery to no longer be necessary.
Then without enough time to even catch our breath, when he was still four, along came the next fight…autism. It was always there, but he was in preschool (2006) when a teacher first uttered the dreaded “A word” and I felt that familiar punch to the stomach that came with the diagnosis of the heart condition. Our lives significantly changed forever again with one simple sentence. “Mrs. Boyers, I think Trey might have autism.” And he did. We always knew something was “wrong,” but didn’t know how to fight it until we knew what it was. And then we fought. HE fought. Hard. He went from a child with no legitimate words at the age of 4 to a little boy mainstreamed by the end of the second grade. AND a teenager who skipped the 8th grade because he was accepted into a special autism high school at the local college! Trey has always shined the brightest light from those big dark brown eyes and taken on whatever the world has thrown at him, full speed ahead.
It was no different when he was diagnosed with T1D at age 13 in 2015. As our “normal” world crashed down around us again with yet another quick one-sentence punch to the stomach, there he laid in his hospital bed hooked up to a myriad of lifesaving devices, telling jokes and doing tricks to try to make his mom laugh. (While inadvertently endearing himself to every single doctor, nurse and dietician that walked into the room that horrible week. He still gets cards in the mail from a couple of them.)
Autism is still a tricky and daily fight, but if you look close enough, there are little rays of light that surprisingly brighten even the darkest days. We’ve already seen a few of those little glimmers since Trey’s T1D diagnosis.
One of our biggest and most exhausting battles with Trey since he was 2 was his very limited diet. He eats the same food every day for breakfast, lunch and dinner. For his diabetes, this actually helped get his blood sugars regulated quickly enough that he got his insulin pump in about 6 months.
He still dreads pump-change day, but his obsession with all things superheroes helped us find a little trick that has helped immensely with changing his pods…
I’m an artist by trade so I have a bit of a leg up on this one, but even if you’re artistically challenged and even if your little T1D warrior doesn’t have autism, this may very well still give them something to look forward to on pump-change day.
Older kids probably won’t appreciate the idea as much, but those of you with little ones might be surprised how picking out new characters for their pods can lift their spirit! Smiley faces, colored hearts, sports teams, even using stickers might just make a painful pod change not quite so painful. I use Sharpie markers for the most part, but the trick is to make sure the ink is COMPLETELY DRY before you put it on (wait about 10 minutes after drawing) and to AVOID UNI SOLVE! It removes (smears) permanent marker instantly, so make sure the site AND your fingers are totally dry before handling and adhering the colored pod.
Doodling on an insulin pump might not make much of a difference for most, but for a few it just might be the difference between winning and losing a tiny battle on that particular day, and if I’ve learned anything in helping my little warrior fight every single day for 14 years now, it’s that winning a big fight in the end is all about winning the tiny battles along the way.
This photo is Trey on his first day of high school, a full year ahead of schedule. He’s still fighting his little broken heart out and with the help of Deadpool, Captain America and Teen Titans Go, he’s winning tiny battles every three days.
