Perspective/Type 1 Diabetes

Courtesy Photo Casey Seitles on vacation this summer.

We started taking yearly family vacations in 2021, the year our now 8-year-old son Casey was diagnosed with type 1 diabetes (T1). T1 goes wherever Casey goes, but we have taught him that it need not limit him. With proper precautions and planning, he can safely enjoy everything there is to do. His approach to managing T1 on vacation has taught me a lot too.

T1 takes no days off, and vacations require special planning. I start by making sure all Casey’s prescriptions are filled. Then, we decide how much of each of the 30-plus diabetes items we should pack. We devote an entire suitcase to his diabetes supplies. I err on the side of caution by packing far more than necessary. Why? Because experience has taught us how much can go wrong. Being caught without essential diabetes supplies isn’t just inconvenient or stressful; it’s potentially life-threatening.

I recall real-life scenarios while packing those extra diabetes supplies. Once we found ourselves without any continuous glucose monitors (CGMs), which transmit Casey’s blood glucose (BG) readings to our phones. We had three replacements, but all failed in turn before they completed their two-hour warmups. Luckily, a friend had a spare one, otherwise we would have to revert to frequent fingersticks and a hand-held glucometer. CGMs are supposed to last 10 days, but technology can malfunction. It’s also easy to accidentally knock a CGM off Casey’s arm, which sometimes happens when he is playing. We wrap his CGM with vet-tape to protect it during vigorous activities or water sports.

And what if we run out of insulin while far from our pharmacy? We need enough to fill Casey’s insulin pump every few days, but even the refilling can go wrong. On several occasions, Casey’s pump didn’t register the insulin during the tube filling process, forcing us to add more, which expelled—and wasted—the insulin already inserted.

Other incidents flood my mind. What if his pump breaks and we must revert to injecting insulin by hand? We would need both short- and long-acting insulin pens, pen needles and syringes for half-unit dosing. Or, what if his pump infusion needle comes out or the tubing delivering insulin from his pump to infusion site comes apart? We have experienced both. Or, what if his diabetes supply case is stolen? It’s hard to predict what can go wrong in new or unfamiliar settings, so we must think through all possibilities to keep Casey safe and healthy.

Our vacations to date have involved one-week house rentals within six hours of home. We do a mix of active, educational and relaxed activities, often at beaches, lakes, rivers, theme parks, nature and wildlife areas and children’s museums. We’ve enjoyed adventures like white water rafting, ropes courses, horseback riding, rail biking and hiking. Many activities require extra thought and preparation due to their remoteness, water involvement or likely effect on Casey’s BG. Casey always carries glucose tablets in case he feels his BG dropping low. I carry extra supplies to address any problems with Casey’s T1 equipment, but I also pack waterproof phone cases, fanny packs and carry bags to protect it. Casey’s insulin pump is waterproof to a degree, but we don’t risk exposing it to water or extreme rides. If needed, we can detach it and later reattach it to dose him for missed background insulin, high BG or food.

I realized on vacation this year that Casey was teaching me something valuable about life with T1. We did an indoor ropes course and Casey uncharacteristically got confused by how he felt.

Thinking his BG was low, he took two glucose tablets before I could tell him the CGM reading was high, in the 200s. We administered insulin to correct that, but his BG soared over 400.

This made me uncomfortable, but Casey went with the flow so I followed suit. He was faster than me on the ropes course, so I had to leave him in control as he sped ahead, trusting he would tell me if he felt bad. Another time, Casey was in the wave pool at a waterpark. I was worried his BG would fall while swimming. He, however, was so carefree and happy. The waves would gently toss him here or there, and he would laugh gleefully. He felt confident he was OK, and he was. Another time I sent Casey down a lazy river with glucose tablets and his phone in a waterproof fanny pack, entrusting him with his own T1 management.

Then, there’s the time he and his brother Jaiden convinced me to go down a steep 65-foot water slide they had already fearlessly descended multiple times. Casey went down first to show me how to position my body. I was proud afterwards that I took the plunge, and realized Casey was showing me the same perspective on life that we had been trying to teach him. Be cautious but still live life to the fullest. Finally, it was he who guided me on the aerial ropes course from tree to tree because he had already done it. I ascended with glucose tablets, his phone and emergency rescue medicine, prepared for anything. But, as on the steep water slide, his BG was thankfully OK and the course was all about having fun. In those moments, I felt a “normalcy.” T1 was there, but my time with Casey was foremost.

Casey has shown me T1 is simply his norm as he tackles adventures head on, even bringing me with him. We have tried to show him he can do anything, and in return he teaches us the same lesson. I’m thankful this is how he sees and experiences life. He knows his body well, reacts calmly to mistakes and balances freedom, confidence and fun with a healthy sense of safety protocols and precautions. Casey’s life is the adventure he makes it. He’s learning, he’s living, he’s growing beyond his years. T1 is along for the ride.

Lisa Seitles

Hammonton

Lisa Seitles and her husband Sam are the owners of READ Preschool and Camp Tuscaloosa. They have four children and are active members of the community.