When my 6-year-old son Miles was first diagnosed with type 1 diabetes in October 2013, I approached the entire experience like a student. The hospital’s three-day crash course in diabetes gave me everything I needed to know about insulin, glucose, and how to manage his blood sugar on a daily basis. I listened, observed, and took tons of notes, so that I could be prepared to manage this disease, my son’s “new normal.” I’m the kind of person who over-prepares, so I took in everything I possibly could and asked as many questions as necessary until I felt like I understood what was expected of me.
After several hours of these lessons — which made me feel like I was back in a college-level biology class — the hospital diabetes educator went through several scenarios involving a little kid’s typical lifestyle, and I was asked to tell her what I would do in each situation. Recess, dinnertime, sleeping, having a treat from the ice cream truck… it all seemed like good preparation for managing T1D in the real world. If I got the answers right, I’d be free to take my boy home and get back to our routine.
But then, in the middle of this test, a final exam I would need to pass, it hit me. One of the scenarios presented was a birthday party. What would I do if there were cupcakes being served? How would I figure out the carb count? What if the kids were also being active, like jumping on trampolines or running around in the yard? How would this affect his insulin needs? I realized that Miles had in fact been invited to a birthday party that very weekend. I would be forced to figure this all out for him the day after he got home from the hospital. And I would not be able to just drop him off and pick him up two hours later. I’d need to be there with him, making all of these decisions and keeping him safe.
It was that moment that I finally got it. I was not there to simply gather information and pass a test. I would need to take that information and fit it into his life, without taking away his childhood or changing our family’s routine or traditions. I put down my pen, put my head in my hands, and cried.
Leaving the hospital the next day, I was as prepared as I could be to return to our daily routine — figuring out how to send him to school, how to manage his blood sugar overnight, and how to dose insulin for our family meals at home. It would be hard, but we would surely get the hang of it.
But what about the rest? The holidays, the vacations, the special occasions? In that first year after diagnosis, every little experience felt different now that diabetes was part of our life — a continual series of firsts, of suddenly realizing “Oh wait, how do we do this now?” — each one a light-bulb moment reminding us how much we still had to learn.
Not only did we navigate that birthday party the day after we got home, but Halloween was less than a week later. Suddenly candy and other sweet treats brought on unimaginable anxiety, as we struggled to figure out his insulin needs and how to give this poor little guy shots in the middle of all the fun. Halloween was a complete blur, to be honest… I don’t even remember what his costume was that year. But the following year it got easier, and now I treat it like most other days. Think ahead, make predictions of what you think is going to happen, and correct or treat if his blood sugar is off. Because the truth is, there are sweets everywhere — not just on Halloween.
A few weeks later, we took a road trip from Maine to visit friends in Long Island. Some were surprised that we didn’t cancel our plans, given this new illness we were still learning to manage. But I knew we would have to figure out travel eventually — it might as well be now! We brought extra supplies with us, having no idea whether a change in environment and eating on the road and at someone else’s house would impact his insulin needs. (Five years later, we are still figuring this out! Sometimes we need more insulin than we do at home. Just this past spring, we didn’t bring enough insulin on vacation and had to reorder at a local pharmacy on the second-to-last day of our trip.)
Throughout that year, we experienced so many firsts. Thanksgiving was only a month after diagnosis, followed by Christmas and New Year celebrations, and learning to stay ahead of all those carbs was a challenge. Sledding and outdoor snow play came a short time after that, and we witnessed what dragging a snow tube up a hill repeatedly would do to his blood sugar. When the school year ended, we had to figure out summer child care with diabetes in the mix. Who could we trust to take on this role that we and his school had assumed since the fall? And come next fall, how would we manage his blood sugar during youth soccer games?
On Miles’ first diabetes anniversary, I looked back at the year like one very long diabetes course. The learning didn’t end when we were discharged from the hospital. We were only just beginning to understand how to navigate my son’s illness in the real world. He’s now 12, and Miles and I have continued to experience more of those firsts — first sleepover, first school dance, first out-of-town baseball tournament — they seem to never end. But after you experience these things once with T1D, you’re better prepared for the next time and the next first.
As stressful as it was, I’m grateful for that first birthday party the day after we got home. I’m grateful for the knowledge that we first received from the hospital and that we continue to learn from others in the diabetes community. And above all, I’m grateful for the courage to let Miles try new things with diabetes. It’s not always easy, but it’s important not to let diabetes stop him from being the great, adventurous, athletic, and social kid that he is.
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.