Lessons Learned from a Child
A father reflects on what his son has taught him about living with diabetes
My wonderful son Stefan has had diabetes since he was nine years old. On the occasion of his 30th birthday, a few years ago, I thought about him and reflected on what he has taught me about living with diabetes.
Memories of diabetes
Thirty years old! Where has all the time gone? I can still see us together in the pediatrician’s office 22 years ago, confirming Stefan’s diabetes and learning all the ways our lives were going to change – forever. And the day not long after when we switched from testing urine to testing blood to check Stefan’s sugar levels. Or the first time I had to give him glucagon to bring him back from a really bad low. Or the day he started using an insulin pump. At 11 years of age, he was one of the youngest kids in the whole country to get a pump back in 1983.
As I think about it, many of my clearest memories of Stefan are diabetes-related. That’s because diabetes has always been a big part of our lives together. So for better or for worse, when we are together diabetes is never far from my thoughts. I know there were times when this got to him. Once, many years ago, he took me to task for treating him like my diabetic son, instead of a regular son. “For example,” he went on to say, “when Kyra (his younger sister) and I come home from school, you always ask her how her day went and you always ask me how I am feeling.”
Can’t get it out of my mind
He was right. I couldn’t put his diabetes out of my mind. This was especially true when Stefan was younger, but it remains true to this day. I worry about him a little more than I do about his brother and sisters. I check in on him more frequently, and in many ways I feel especially close to him, as well. Stefan often talks to me about the lessons he has learned from diabetes. Here are a few of my favorites.
Find strength
Once, when Stefan was 12 years old, I said I wished his diabetes would go away. Stefan’s response surprised me: “I don’t feel that way. As much as I hate my diabetes, I don’t wish it would go away. It has taught me how to take care of myself, and I wouldn’t give that up for anything in the world.” I thought then and I think now, bless you, my son.
Be clear about your priorities
For Stefan, taking care of himself means doing his best to keep things simple and stay clear about his priorities. When he stays focused on the things that matter most to him, his family and his health, his life is very good. When he loses focus and adds too many items to his to-do list, things can get rocky blood sugar-wise and otherwise.
Don’t expect things to stay the same
Diabetes is never perfectly predictable, and sometimes it is perfectly unpredictable. The balance of food, activity and insulin that give Stefan near-normal blood sugars four days in a row can suddenly produce numbers in the high 200s. So Stefan has learned to appreciate the times when things go smoothly and be prepared to make adjustments when he hits rough water. Stefan is great at making these adjustments, though a little venting may be required before adjustments are made. Occasionally Stefan calls to tell me about his latest diabetes aggravation, usually a run of high sugars after long stretch of very good ones. If I start to offer suggestions for adjustments to correct the problem Stefan is quick to say, “I know all that, Dad. I’m just calling to blow off a little steam. All you have to do is listen.”
Don’t expect perfection
Stefan’s blood sugar control has always been excellent. But excellent is not perfect, and Stefan knows that setting realistic goals is the key to not burning out and maintaining his motivation to do a great job taking care of himself. Stefan is a wonderfully healthy 30-something, playing summer lacrosse with men in their late teens and twenties, with no sign whatsoever of diabetes complications. Still, his control is not perfect; he has his highs and lows. He lives by the words of a very wise person I know who has had diabetes for more than 50 years, “Don’t try to be perfect; try to be very good. Perfection only lasts a moment, and diabetes lasts a lifetime.” These words serve them both very well.
Work hard
Perfect results are impossible, and even very good results take a lot of hard work. Stefan checks his blood sugar levels six or more times each day and makes adjustments continuously to maintain good control. He does a little “diabetes check-in” with himself at least once every 15 minutes each and every day, to monitor how he is feeling, what he is doing next, when he last ate, when he will eat again and whether he should test his blood, eat or take some insulin. Keeping diabetes in mind and doing what’s called for quickly and effectively is hard work – hard work that pays off.
These lessons have helped Stefan succeed in his life with diabetes, and they have helped him in other aspects of his life as well. Recently, Stefan has started to share the lessons he’s learned with more people who have diabetes. Earlier this year, He joined me for a talk I was giving to a group of athletes who had diabetes. I can’t tell you how much I enjoyed seeing the audience respond to his warmth and wisdom.
A few months ago, Stefan and I wrote a book called "Optimal Pumping" with a friend of mine, Freddi Fredrickson. Freddi is a vice-president at MiniMed, a company that makes insulin pumps. She has been using a pump even longer than Stefan – more than 20 years.
Stefan and I wrote another book, published by the American Diabetes Association, called "101 Tips for Coping with Your Diabetes." So our lives with diabetes have taken a new turn. I don’t know what the years ahead will bring, but I do know Stefan will continue to be my best diabetes teacher. I know he will share his wisdom with a growing circle of people. And I know I will love him more every day.
Happy birthday, Stefan.
