(I was recently asked to write a guest post for Diabetes Mine. I'm so excited to share our family's story on her wonderful site! While you might know some of the info here, I thought a bit of an introduction was in order.)
Last week, as I checked my five year old’s blood sugar, he looked at me and said, “I wish I didn't have diabetes and I was like you guys."
Me too, I thought. I wish I could hug you so hard I could mush my pancreas right into yours and we could switch. I wish for no more shots, no more finger pricks, no more “button” changes. But I know that sometimes wishes don’t come true.
“I know honey,” I said. “Sometimes I wish that too.”
"Why did G-d make me with diabetes?"
Deep breath. “I don't know, but that's just the way it is. And if you take care of your diabetes it won't stop you from doing anything you want to do,” I said. Is that the right thing to say?
“Yeah, I’m the boss of my diabetes, right?”
“You bet, dude.”
Benny was diagnosed with type 1 diabetes one month before he turned two. Three years later, I’m often asked, how do you manage diabetes in someone so young? Of course, we didn't know any other way, but it's a challenge, to say the least. Not for wimps, and you better have a sense of humor!
Benny got into the diabetes routine before he could say it – until he was about 4, he had “di-di-betes”. The finger pricks were never a problem. He often didn't want to stop what he was doing, but he would almost always stick out his hand. We found out he’s ambidextrous, which is helpful. We also found that he liked to see just how much blood he could squeeze out and wipe all over the floor or table after we turned away. Not so helpful.
We did have to hold him for the first two weeks of shots. Sometimes it was more of hug or a firm cuddle but sometimes it was just flat out wrestling down a crying, struggling two year old. That was the worst. But soon he didn’t mind and again, as long as he didn’t have to stop playing for very long, he would just hold up his arm. We got quick and discreet – I once gave him a shot while sitting in the audience at a Go Diego Go show. He didn't want to get up and miss the show, so we didn't.
The only way to know what a toddler will eat is to wait until he’s done, and then add up the carbs. We’ve only recently started bolusing before meals, and even then only for part of the portions. It’s always when I’m sure he’s going to eat something (birthday cake!!) that he bails halfway through.
Sometimes I'm amazed at how far we've come. One our first night home from the hospital I checked Benny as he slept. I couldn’t decide whether to raise the crib rail or stick the lancet through the slats. I’m pretty short, and I was trying hard not to wake him up! He was 225, but I didn’t want to give him a correction. I just didn’t want to give my baby a shot while he slept in his crib. I started to walk out of the room and then it hit me – diabetes wasn't going anywhere, There was no room for magical thinking here and I needed to get it together. Snap out of it, mom and go give him that shot. So I did.
(I did all the finger pricks and shots through the slats, by the way. We were very happy when Benny moved into a bed. Blue and red sheets and blankets so the blood drops don’t show!)
I will spare you the details of checking for ketones while he was still in diapers, and of potty training with an inset. Did I mention we laugh a lot?
My husband and I told each other he was so young that diabetes would be all he'd ever know, and truly it's such a part of his routine that he rarely questions it. Until he does, of course, and then we have conversations like the one last week.
I would love to take this all away from him and take it upon myself. I think any parent would. But that’s not how it is. It’s my job, and his dad’s, to take of him the best we can and to prepare him for the time when he’ll do it himself.
Benny will start Kindergarten this fall, getting on that bus with his big sister looking out for him. He’s checking himself and using his pump more on his own. Of course, he won’t be unsupervised – the school nurse and I are already great pals – but we do hope this will be a big step toward some independence and responsibility. Big talk, right? Come back and check on me in September – when my heart will be in my throat and my cell phone in my hand!