I still can’t believe we did this. In 2021, our 16-year-old son Benny spent a month overseas in Israel with a non-diabetes camp program.
This kind of independence doesn’t happen overnight. Benny was diagnosed with type 1 back in 2006, just before he turned two, and had gone to diabetes camp for many years. He’d also spent several summers at a non-diabetes sleepaway camp.
This trip took a lot of work. You can read the entire story of planning, execution, and worrying in my new book, “Still the World’s Worst Diabetes Mom.”
Once Benny was home, I interviewed him for my podcast. I’ve included some of what he had to say later in this article.
I reached out to the program six months in advance to make sure everyone was on the same page. We all agreed Benny would be independent in his care, with the staff ready to act as a backup.
Benny asked me to continue to use Dexcom Follow while he was away. You may be nodding your head, saying, “Yes, that’s a great idea.” Because I’m the worst, I was not nodding. I was thinking, “What good is that? I’ll be seven hours behind and if your alarm is going off at 2am what am I supposed to do? Call the embassy?”
We agreed that if his urgent low went off, I would wait at least 15 minutes to text him. If he didn’t answer and/or the urgent low went off for another 15, I’d text the counselor we’d selected. After that, I’d go up the chain to other staff. If it were an emergency, I’d be able to reach someone.
Like everyone on the program, he’d carry three days’ worth of clothes and supplies in his backpack. The main suitcase and big diabetes bag would stay at their home base, with most of the insulin in the fridge there. We packed 50% more of everything diabetes and twice as many Dexcom sensors.
When he left, I’m embarrassed to admit that I didn’t go to the airport. I thought it would be better for him if I said my goodbyes at home. The last thing Benny needed was me crying all over him at the gate. I gave him giant hugs and tried not to throw up as soon as he walked out the door.
Benny switched to a much lower basal rate profile as soon as all the hiking and activity geared up.
Benny: “About 20 minutes into the first hike. I immediately went low. The MEDIC that was with us was great. She had prepared and had four hand-sized squeeze bottles of honey, and I downed like half of one like 20 minutes into the trip. Battling those lows were the hardest thing I had with diabetes pretty much the entire trip.”
What I worry most about is diabetes stealing the fun and joy out of situations. Or that other kids will get nervous or think diabetes is weird. Luckily, Benny doesn’t seem to share those worries.
Benny: “I don’t hang around people that would dislike me for something I can’t control. I don’t interact with those kinds of people. We almost never had to stop for me, but we stopped a lot anyway, just because everyone got tired. If we stopped because of me, everyone would be like, ‘Oh great, we’re stopping. Thank you, Benny!’”
The temptation to stare at the numbers all day was very strong. When Benny goes to his regular non-diabetes summer camp, we don’t remote monitor. Believe it or not, it’s easier for me that way. I still worry, but I know he’s safe and they’ll call with any issues.
For this trip, I needed a way to check in without overdoing it. I talked to my therapist and decided that, assuming there were no urgent low alarms, I’d only look at the Dexcom numbers twice a day. Once when I woke up and again around 10pm.
Why those times? There is no way I could pretend I wouldn’t wake up and grab my phone. So instead of fighting that, I made it official. I picked 10pm because Israel is seven hours ahead of us. 5am over there was close enough to reassure myself his overnight had gone well.
Benny said managing food was easier than he expected; they ate a lot of the same kinds of meals at the same times. He uses the Tandem tslim X2 pump with Control IQ, which I’m sure helped quite a bit. Under or over-bolusing is less of an issue when you have a pump system quietly helping you out.
A big reason I’m comfortable sending Benny pretty much anywhere is because I know he’ll explain emergency glucagon to his roommates and to staff. Knock on wood, we’ve never had to administer it.
One of my listeners asked Benny what advice he’d have for other kids with diabetes who want to go away from home. Not necessarily a month abroad, but maybe to soccer camp for the first time or an overnight school field trip without their parents?
Benny: “It’s going to be fine. If you know what you’re doing at home. You know what you’re doing anywhere. It might not be a month-long trip in a foreign country, it might be to your friend’s house for a couple days. But if you think or know, you trust yourself enough to be able to take care of yourself for a couple of days, I think you should go for it. You’re always going to have someone with you who cares about you and will do things that you need for you.
Stacey: “You mean as a minor there is always an adult on these programs?”
Benny: “Yeah, there’s always going to be at least two or three people that will help you with whatever you need.”
You don’t need all caregivers to be diabetes experts, especially as children with type 1 get older. You do need people who care and pay attention.
Benny: “I mean, my thing is, you got to enjoy life. You can’t worry about every little thing all the time. You know, you might live a full life and have perfect numbers. If you do good for you. You’re top 0.1% of diabetics. But there’s no point in worrying about being perfect all the time. Because it’s unrealistic. And it’s not fun.”
When Benny was heading home, this time I did go to the airport. He came off the plane exhausted and hungry. He let me hug him for an embarrassing amount of time.
It was fantastic.
Diabeets
28/10/2022