It marks one year since my son was diagnosed with Type 1 Diabetes, so it’s our first “Diaversary”. I won’t tell you that it’s been an easy year for my now 12-year-old son and our family because it’s been really tough. Most of the time Type 1 Diabetes has been a runaway rollercoaster. There are highs and lows (of blood sugar), but it’s been too many times of too high or too low — we should be in range. Please don’t feel sorry for us or think we’re miserable all the time — because we’re not. A year ago we were so blissfully ignorant about Type 1 Diabetes. We only knew of Type 2 Diabetes – I didn’t remember that I did know someone at summer camp who had it and had one friend with a child with it. While I don’t want to rehash the diagnosis story, my son was in DKA (diabetic ketoacidosis) and was at the Children’s Hospital for two days It still pains me to see the photos of him from last summer, especially the day we had to go to the Emergency Room at Cohen’s Children’s hospital. Diaversary: It’s Been 1 Year Since My Son Was Diagnosed with Type 1 Diabetes
It’s just not an easy illness and even if my son does everything he needs to do, puberty has messed with how things should be. Growth spurts just throw everything out of whack and a meal that shouldn’t have spiked his blood sugar, suddenly will. Even if we dose him with the correct amount of insulin to cover what he eats, sometimes it still fails and he goes either very high or very low. Diaversary: It’s Been 1 Year Since My Son Was Diagnosed with Type 1 Diabetes
I worry all the time and I sometimes wait until 1:30AM to go to sleep, just to make sure that he’s okay. Most of the time he’s Hypo-unaware, which means he doesn’t realize when he goes really low or high. But sometimes he knows and will come to me for help. Sometimes he won’t and then I have to get involved. Luckily, for the most part, he’ll go low at school or at home. But I’ve had to manage things when my in-laws or my mother was with him. He wears a continuous glucose monitor on his lower back that I can access via my phone (the sensor on his body talks to his phone, which talks to my phone).
There are so many words and terms that entered our vocabulary this year – bolusing (making sure a meal has enough insulin); correcting (which means that my son needs more insulin to bring his blood sugar down), carbing – which means we make sure we figure out the carbs in a meal so he can take his insulin dose, Dexcom (or Dex) – which is his continuous glucose monitor, Omnipod – which is his insulin pump, PDM (Personal Diabetes Manager) – what my son carries around to control his pump, Genteel – which is the finger pricker we use to test his blood manually, test strips – which go in his PDM. Diaversary: It’s Been 1 Year Since My Son Was Diagnosed with Type 1 Diabetes
But this is the reality for us.
So many times when my son had to inject himself with insulin. Luckily he went on an insulin pump in January.
So much money we’ve paid out of pocket to cover what the insurance didn’t.
So many nights I’ve had to prick his fingers to check his blood sugar while he’s sleeping
So many nights that I’ve gone into his bedroom to check that he’s still breathing and that his blood sugar is in range.
So many times that I’ve woken up convinced that he’s gone into a diabetic coma in the middle of the night.
So many nights that I peek in on him at 4 or 5 am.
So many times we’ve fought over him checking his blood sugar, giving himself more insulin to bring his blood sugar down or making him have a juice box or snack to bring his blood sugar up.
So many times he’s looked at me in anguish, upset that he has to deal with all this.
Day trips and weekends away mean that we pack extra supplies and foods/drinks to combat blood sugar lows. I always have candy or cake gel on me — as my kid won’t always make sure that he does (GRR, he actually went very low today and had to run into Baskin Robbins and ask for an ice cream symbol).
And so you know, or may not know, this wasn’t caused by my son eating too much sugar. He’s a skinny kid. While normally I would restrict treats, it took a while to let him have them. And since he wasn’t really into sweets, he would accept that. Now I trust that he can handle giving himself more insulin to cover his treat. He’s also a kid and I feel really bad restricting him but letting his sister and brother have that brownie. So, he has the brownie. Or marshmallows.
Type 1 Diabetes is an autoimmune disease and if you really want to know more, my friend over at Sugar Spice Insulin recently wrote a really insightful piece on it. I was lucky enough to meet her through a former sorority sister of mine who knows her.
I’ve been lucky to meet some moms and dads that have been super-helpful. Some people I know reached out via Facebook Messenger (which I’ve kept private, it’s not my business to share their story), I met moms in Facebook groups – everyone has helped. Diaversary: It’s Been 1 Year Since My Son Was Diagnosed with Type 1 Diabetes
Friends have read up on it and offered support. My family has been great.And since my son has been diagnosed, at least 3 people that I know have children or relatives that were diagnosed. This is a huge thing and I had no clue! While we haven’t gone on many road trips (I’m not counting the 2 hours that it takes to get to my in-laws’ house), we finally started traveling with Ben in early July. We need to get back to being normal. It’s been long enough. We’ll be going to Israel in February and I’ll have to figure out how to pack everything we need for Ben in a much lighter way.
Food is tricky, when we were first diagnosed, I was thinking that everything needed to be sugar-free (I was wrong). Then I figured everything should be low carb (not exactly true, but I do believe that down the line, lower carb may help him be in control of his Type 1 Diabetes more). But he’s a kid and even though we did a lot of low carb snacks from August to January, once he went on an insulin pump he didn’t want to do low carb. He’s still a kid and how can I tell him he can’t have pizza or a cupcake? If he doses himself with insulin to cover those foods, then he can have it. Trouble is we have to guess often. Carbs aren’t listed on most menus and when I ask waitstaff they don’t know. Sometimes I get store employees telling me that something isn’t meant for diabetics – but they just don’t know that Type 1 Diabetes is really very different than Type 2 Diabetes. I just nod and order it anyway. Ice cream has never hurt my son’s blood sugar – though Pizza and Pasta are very tricky due to the fat content. Diaversary: It’s Been 1 Year Since My Son Was Diagnosed with Type 1 Diabetes
Unfortunately, my kid didn’t have the most fun summer (not counting road trips), but that’s another post to come!
We persevere. We’re trying to move on with our lives. My kid is thriving. He’s healthy and while I am not going to share his A1c, our doctors are fine with it. He’s really grown this year – weight and height. I wouldn’t wish this disease on anyone, but hopefully one day, they’ll find a cure.
Here’s to Warrior Ben! May he slay middle school!