June 1, 2004. My son was just over 1-year-old when he had started acting lethargic, sleeping a lot, and acting grumpy. On a weekend trip before June 1st, we also noticed he started drinking a lot of water. When returning home, I looked up the symptoms and my heart dropped. I knew my very young son had Type-1 diabetes. I didn’t want to alarm my wife until I knew, but a trip to the doctor’s office confirmed my suspicions. Then came the hardest call I ever have had to make, the hardest moment I’ve ever had in my life…calling my wife and telling her to meet us at the hospital, where he was being admitted.
It’s been almost 9 years since that day. After a rough first year after diagnosis, we found a pediatric endocrinologist who is wonderful, and we’ve learned to manage the disease as best that we can. On a day-to-day basis, the routine is now second nature. Checking his blood sugar about 10 times a day. My wife and I taking turns getting up in the middle of the night to check him, to make sure his blood sugar isn’t going low. Carrying supplies with us whenever we leave the house. All-in-all, the ‘extra’ tasks we perform to deal with the disease aren’t that time-consuming, and they’re now routine. As something we’ve been doing for years now, even the disease itself is sometimes forgotten, even as we’re checking blood sugars and maintaining his insulin pump. We’re a very happy little family.
But then, periodically you get reminded of the seriousness of the disease, and some of the problems your young son may eventually face. This week, a friend at work told me the story of a young man who has had Type-1 diabetes for about 15 years, hasn’t taken care of himself in recent years, and is now facing some of the inevitable long-term complications of the disease. As a father of a young son with diabetes, hearing a story such as this is like being hit with a sledgehammer, jolting you back to the harsh, long-term realities of the disease. You realize that the extra challenges your son will inevitably have to deal with. You look at his giggling, cheery face and start to think thoughts about his future that no father should ever have to think about.
We’re managing the disease quite well. He has had an insulin pump since he was two years old, and with our very aggressive attempts to control his blood sugars, we can at least comfort ourselves with the fact that we’re doing everything humanly possible to prevent or significantly delay any long-term effects of the disease. We’re hopeful that modern medicine will continue to develop new treatments of the disease, and will eventually find a permanent cure.
But in the meantime…the clock is ticking.
After hearing the story of the young man with complications yesterday, it certainly makes you appreciate TODAY, that there are no guarantees in life, and that you need to live life to the fullest while you can. We’re now going on a train-based vacation this summer! We’re taking a 32-hour train ride to Portland, staying at Cannon Beach for a week, and then returning by train. We’re spending far more on the train that I thought I’d ever spend for transportation, including a “Harry-Potter” style train cabin that my son is already talking about nonstop.
Life is short. No one knows that better than the parents of a child with a serious disease.