Kaelan spent three and a half days in the hospital. It was all pediatric: there were a good number of children his age (8-12) around him, several of whom were in cancer treatment. I was anxious about my son, but every walk around the ward brought some tentative tears that I had a hard time stopping: several of these kids would probably not make it through the year. My son might be one of them.
Once we had arrived, the nurses and the doctor explained to us the nature of Children’s Hospital protocol for DKA recovery: they felt it was essential to go slowly and progressively, instead of trying to bring the patient’s BG down quickly, and risk bouncing back and forth several times (and losing a patient in the process). At the time, I was rather frustrated by the approach: I wanted Kaelan to get better as quickly as possible. I was afraid he would die in DKA if they did not bring him out of it faster. Later, I saw first hand the frightful oscillations in glucose level that you can create when you treat too hard, and understood much better why.
MP and I shared our time around Kaelan so that one of us was always by his side. Slowly we saw him get better. The staff in the ward was supportive and kind, a group of compassionate human beings with immense sympathy for their patients. Every procedure was an opportunity to teach us about both the disease and the procedure itself. By the time Kaelan was ready to go home, each of us had had many one-on-one teaching sessions, and MP and I both felt comfortable testing Kaelan and injecting insulin—-Kaelan was not so sure. But he was alive, we had a clear regimen for food and insulin, and the world, for us, was a different one from what it had been a week before.
When we got home, I spent the weekend researching diabetes, first on the web, then through specialized scientific publications. I collected more than 60 articles in two late nights of work, that I read line by line. This would become a habit that I still follow more than 5 years later. It became clear to me that there was no secret path or medical trial towards a cure or even a promising improvement of the condition. The only question ahead of us then became—-how can we treat this most efficiently on a daily basis?
That weekend, MP and I had what, in retrospect, was our most momentous discussion about diabetes, probably the shortest, and one that has been the critical decision that always guides our path. It was amazingly short and yet has directed us ever since. I took MP aside and asked: “How are we going to approach this disease? Do you have any thoughts?” MP was raised in the Midwest, in central Illinois, and has a Midwestern directness and pragmatism about her that has never failed her. She did not think twice, and replied: “We’re going to make sure that he will never be limited by diabetes.” I had been intending to get to the same conclusion after a few hours of analysis. I immediately agreed, and the meeting was over.
This has been our guiding principle ever since: Kaelan’s life has been one where diabetes was never a reason to say no to any option. We have encouraged him to do everything he wanted to do, and worked hard to make it possible. Sometimes, it has taken a lot of planning, and there is no doubt that diabetes makes some things harder—-but they are never impossible, and we have always made them possible: sports, travel, activities, anything that other kids do he can do.
This weekend was, for me, the beginning of a psychological downward spiral that took several years for me to get over, but that never touched Kaelan or Mary Pat. I was deeply affected by my inability to protect my son from a lifelong disease. I never discussed it at home, but, late at night, I kept reviewing, in my mind, all of the possible negative outcomes for him, on all of the consequences of diabetes on his life compared to that of a glucose-normal. Then I would embark upon further investigation of present diabetes research, trying to find a thread towards a cure, yet knowing there wasn’t one.
The road I took was unnecessarily painful and difficult. It was a mistake that I hope others reading this will avoid. It took me several years to realize that, very quickly—much faster than I realized—T1D would become a part of the norm for him—and for us. It certainly is today and has been for a long time. It is not frightening or worrisome: it just is.
Growing up T1D 