One Year Later
Late on a Monday afternoon last August, my wife called to tell me that she had to take our older son to Children’s Hospital. She had trouble telling me herself, so she put our pediatrician on the line. He explained that Sam’s blood sugar was high and he had something called ketones in his urine. Sam needed to go the hospital. I rushed to meet them.

After a few more tests and a couple of hours of observation, a very kind and attentive emergency room physician came back into the room and confirmed what everyone suspected. She said that of all the chronic diseases one could have, Type 1 Diabetes was the best of bad options: it was treatable and manageable. At the time, it was hard to see it that way. All of a sudden, our lives had changed forever. Sam’s pancreas could no longer make insulin.
With Sam admitted to the hospital, I spent that night at home alone with our younger son and struggling to sleep. I was overwhelmed by the thought of having to care for a four-year-old in such an intense way. Injections. Blood sugar checks. Constant monitoring. Watching what he ate. I was intimidated by some near-term challenges as well: how would we find a new babysitter who could help him with his diabetes, could he stay enrolled in his school, would we ever be able to leave him alone.
During the next day in the hospital, I got woozy practicing to check his blood sugar. It was really hard to keep air bubbles out of the syringes when drawing the insulin. When I went to the pharmacy to retrieve all of his prescriptions, I needed a large shopping bag to haul them all away. I did not want to bring so many medical supplies into our house. We had to order a sharps container online to dispose of the needles. I hated that burnt orange bucket.
A new reality set in very quickly. Exhausted by the hospital stay, we had to awake at 2 a.m. each night to check Sam’s sugar. Giving injections before meals was a drawn-out negotiation requiring at least two adults to administer the shot. I needed to leave work early most nights to help at home. One particularly hot afternoon, Sam and I went to the local farmer’s market. I asked him if he wanted something from the ice cream truck parked in the back. When informed that having a treat required a shot, he asked for a cheese stick instead.
Now, after a year of living with T1D, the anxiety from the unexpected and unanticipated has waned. The monitoring remains a constant, but it is far more in the background. Our day-to-day rituals have incorporated new, additional steps, but our diabetes care is now part of the routine. Bedtime includes a bath, books, and teeth brushing as well as questions about whether Sam needs a snack, a reduction in his insulin pump’s basal rate, or another sugar check. Our gear for outings — both near and far — requires snacks and a first aid kit of sorts, which includes additional pump supplies, test strips, emergency glucagon, and fast-acting sugars.
When Sam was first diagnosed, I wanted to trade places with him. I wished he was not afflicted with diabetes and that I, instead, could bear that burden. I worried that diabetes would prevent him from having certain experiences and opportunities. Today, I do not linger over that thought as much. For Sam, diabetes is a part of who he is, just like all of the qualities that I cherish daily. I don’t see as much burden anymore. One year in, I am much more at ease because of how Sam has handled the situation.
Sam has embraced this challenge from the get-go. He enjoyed flexing his bicep when they measured his blood pressure at the hospital (“Because I eat broccoli,” he said) and showed off his “cast” (a wrist covering for his IV) with tremendous pride following his stay. At school, after returning for the new year weeks post-diagnosis, he talked to all of his classmates about his new condition and explained to them why the teachers were checking his blood sugar. He began doing calculations based on meter readings. He started looking for matches between the time on the clock and his blood sugar levels. 138/1:38 was a big hit one afternoon.

Sam has never showed any shame about having diabetes. He has never said no to having his sugar checked. He is engaged when it comes to treatment decisions. Learning how to enter information into his insulin pump and check his own sugar have become sources of pride. Through his diagnosis, he has even sought to connect with others. On the beach last February, we noticed a woman walking along the water, who was wearing the same style of continuous glucose monitor as his. Sam chased after her to show her that he had one, too. He ran quickly to catch up to her and struck up a conversation (with a little help).
Sam is now back at camp. With lots of new faces and children around, and with an insulin pump and a CGM as part of his visible gear, he is inevitably asked questions. Why do you go to the nurse’s office so often? Why do you wear that “thing” (his insulin pump) on your shorts? What is diabetes? Remarkably, and without any coaching from his parents, Sam has started to navigate answering these questions from his peers. Among his favorite responses is an explanation about his pump: “I tell them that they are my robot remote controls.”
A few days ago, Sam and I returned to the same farmer’s market (with his younger brother in tow). We went straight to the ice cream truck, and he ordered a scoop of oreo ice cream on a cone. We checked his CGM, entered the carb count into his pump, and delivered the insulin. Then, he enjoyed a cool treat on a hot summer’s day. I helped by cleaning up the cone when too much began to melt. It was delicious.
