We’ve been living with my 12-year-old son’s Type 1 Diabetes for 9 months and frankly, it’s a tightrope. While yes, we’re getting used to it, but things aren’t stable yet and I don’t know when and if it will ever be stable. He won’t outgrow this like he did with his sensory issues. I feel bad saying that to people, but its the truth. Every day is different and we have good days and days where things just go wrong. Some days when diabetes plays nice and some days when it doesn’t. We’re at the mercy of a chronic illness that we’re struggling to understand. Our Type 1 Diabetes Journey: 9 Months In & It’s A Tightrope
If my son gets too much insulin he goes low. If he gets too much, he goes high. We have to guess at carb counts because when he eats, we always have to figure out what the carb counts are. Luckily for packaged foods or certain foods, it’s easy. But most of the time, for example at restaurants, we are really never able to get the correct carb amount in the food. We use apps and a book to figure it out, but my fear is that we’ll be wrong. Can you imagine having to guess how much medicine to give yourself? That’s what we have to do.
And then there’s growth spurts (hello puberty). These mess with my son’s body big time. It makes a normal day go haywire, as growth spurts make my son’s blood sugar go super high. If he has an insulin pump fail (like he did last week and like he had yesterday) even if we catch it quickly, it can make him go super high — especially if he doesn’t get the insulin he had figured out that he needs through his pump.
So basically, here we are 9 months in and while we are handling it better, Type 1 Diabetes is awful. I’m concerned with what’s going to happen down the line. I’m concerned that my son will have horrible insurance as a grown up – we haven’t met our deductible for the year yet with my husband’s insurance and the rising cost of insulin and the devices my son uses to stay alive (Dexcom Continuous Blood Sugar Monitor and Omnipod Insulin Pump).
I will admit that sometimes it’s great to get a break from my son’s Type 1 Diabetes. I think about it way too much and I know that my son is tired of it. He hates his Type 1 Diabetes. He hates that I have to help him manage it. While I’m very lucky that he’s an older kid now at 12 and I still haven’t had to give him one injection – when he was on the insulin pens he gave himself shots and now he can pretty much install his own insulin pump every 3 days. However, I have mastered the art of taking his blood sugar with his pricking device as he sleeps without waking him up most of the time. We have to consider every little thing he puts in his mouth. My son can have sweets and ice cream and luckily we can let him have it (and just cover the carbs in the foods he wants with insulin), but I also know that we have to exercise restraint.
Just because he can have it doesn’t mean that he can have it all the time.
I’m all for treating him like a normal kid, but normally I wouldn’t say yes to ice cream and candy all the time. But I also say no when I know it’s going to hurt him. I do feel like the worst mom ever when I have to tell him he can’t have something and then he sees his brother and sister get it. But if he’s already eating a tricky food like pasta or pizza, that is going to shoot his blood sugar way up, giving him ice cream on top of that is just insane. It’s just too dangerous.
My kid will need insulin for the rest of his life and I’m just worried that he will make the wrong choices down the line when he’s outgrown me. When he’s in college and goes out drinking (very dangerous for a person with Type 1 Diabetes) or when he’s an adult and he’s out with a girlfriend. What if she won’t notice when his blood sugar drops — my kid barely notices when it does.
Honestly, I still hold my breath when I wake him up in the morning, because I’m afraid that my son’s blood sugar will have dropped so much during the night and I won’t hear his Dexcom Continuous Glucose Monitor Alarm. I worry that he’ll go into a coma, or have a seizure…or worse.
So, here’s to the moms of children with chronic diseases – we fight a battle every day that you may not understand. We give up sleep and jobs and time to make sure our kids can fight and turn the tide.
Note: I am not a doctor or have medical training. I talk about Type 1 Diabetes from a parent’s point of view. Always consult your endocrinology team if you have any questions. I advocate for my child until he can advocate for himself.
Read more of my son’s journey with Type 1 Diabetes below. I also share a lot of this over on my instagram stories.