I sat on the hospital bed, crying. It was after 9 p.m. and my two-and-a-half-year-old son, now two full hours past his bedtime, was in my lap. He hadn't been feeling well and must have been exhausted. But there he was, arms wrapped around me, gently patting my back while whispering in my ear: "It's okay, Mommy. It's okay." If the shock of the news hadn't brought me to tears, this tiny act of compassion surely would have.
My son had just been diagnosed with Type 1 diabetes. This is the autoimmune disease in which the body destroys the cells in the pancreas that create insulin, the hormone that allows the body to use the carbohydrates in the food we eat for energy. Since his body could no longer do this on its own, my son would need to be injected with insulin at least four times a day for the rest of his life. Needles. Four times a day. Forever.
Any mother whose child receives immunizations knows the anxiety that goes along with needles, and that's just a few of them at various milestones. The thought of this becoming a daily occurrence in the minutes and hours after diagnosis left me shattered and overwhelmed. At that moment, I wanted nothing more than to have my husband there with us, to hug me and tell me we would get through it together. But there was our four-year-old daughter, sleeping at home and blissfully unaware of the change our family was undergoing, and he couldn't leave to be with us.
My son and I were waiting to be discharged so that we could leave one hospital for another that specializes in children's care. In those few moments as I quietly wept, I was introduced to a side of my son I hadn't seen before. I was surprised that he could demonstrate such empathy and it filled me with happiness and warmth. It also made me sad – and angry. His life as we knew it was over, and he had no idea. All he saw was his mommy crying and he wanted to fix it. I felt helpless. I wanted to do the same for him but this time, it wouldn't be possible to fix.
We were all starting a new life that would be full of finger pricks to check his blood sugar, insulin injections, and detailed carbohydrate counting at each and every snack and meal. On top of that, we would be trying to calculate how much exercise he had, and how and when that would affect his blood sugar. We were discharged from the hospital at 3 a.m. and were to report back at 8 a.m. for two full days of training.
My husband and I were terrified for those five hours at home. Our son's life was in our hands, and we didn't yet know what this all meant. The next two days were difficult: full days of meetings and lessons with various nurses, doctors, a nutritionist and a social worker. The information came in many forms: on the white board, handouts, books … it was overwhelming. We needed a full piece of paper to cover his list of prescriptions. Being bombarded with technical information while exhausted and emotional is not a good combination. But we had no choice.
After our crash course, we were on our own again at home. We became experts very quickly. We know now that T1D is a teeter-totter you are endlessly trying to keep even, trying to match the amount of insulin you inject to the amount of carbohydrate being eaten, then throw in how much energy the body uses. It's a daunting balancing act.
Finally – finally – you get it all right one day. So, you do the exact same things the next day because they worked perfectly yesterday, but they're wrong. You just do the best you can and take one day at a time. Frustration, worry, and fear are all just part of the day now. I'm trying to be my son's pancreas for him. And it's a damn hard job.
We've come a long way since Drs. Frederick Banting and Charles Best discovered insulin in 1922, and there are many exciting things on the horizon. I'm hopeful that my son will see a cure in his lifetime. He is now five and wears an insulin pump, which means his multiple daily injections have been replaced with one injection every three days. In the early days, I had to read the step-by-step instructions each time, and he cried when it was inserted. Now he's pretty good at doing these injections and understands when he can't always have the same treats as other kids, but it is absolutely heartbreaking when we hear him say, "I wish I didn't have diabetes."
When I think back on the day of diagnosis, the thing I remember most is his arms around me, and the incredible feeling of comfort they gave me. Those small yet chubby, adorable toddler arms. His pancreas no longer functions properly, but his heart is amazing and that's all him.
Michelle Brown lives in Toronto.
This is part of a series about extraordinary experiences in personal health. Share yours at email@example.com.