“Dad, want to play catch?”
Those words meant something was up. They began what I can only describe as a lifelong, ongoing conversation with my sons about chronic illness. On that day, it was a discussion about my type 1 diabetes with my youngest son.
His questions were clear, and I did not need to go into dire warnings or hype the potential outcome. He knew all of that because he had listened to his mom, his brother, and I discuss it often. What he wanted to know was more basic. Would he be OK? Was he going to have diabetes? When could he expect the worst? I told him what I knew. He would be OK, his mom and I were working hard to take the best care of him and even if the worst happened, one of us would still be here for him. We did not know his risk of having diabetes, but if he were to develop the condition, we would figure it out.
The conversation continued periodically. He would raise the issue of diabetes and we would discuss what was on his mind. But regardless of what he asked, what he really wanted to know the same things. Would he have a stable life, and what would happen if I were not OK? My answers never varied much. Sure, we talked in more detail about what diabetes is and what was not working in my body. But the focus has always been about my health as a person with diabetes.
Then, when he was a senior in high school, we had a very different conversation. This time it wasn't about diabetes but rheumatoid arthritis (RA). When I received that diagnosis, my young son had just graduated from high school and he was off to college. He wanted to know the basics, of course, but as an 18-year-old his questions were less about his own safety and more about his mom and me.
What changes would we make in our living situation? What was the prognosis? Had we planned enough to support ourselves if I could not work? Did I have enough money for medications? I had much the same answers. We had saved, but we could always have saved more. I had insurance, and I had good doctors. And yes, I was pursuing the best treatments available.
The key in my family has been three things.
- We are open. I do not hide chronic illness. My children have always known what they wanted to know, and we’ve created an open environment where they are free to ask what they want and need to. There has never been a need to pile on information to stress the gravity of the situation.
Our children lived chronic illness. My kids saw me have insulin lows and later barely able to walk. They also saw me play catch and laugh. I was a whole person to them and chronic illness was simply a part of it.
We have been open about finances. When I stopped working, I took our sons with me to discuss finances with our financial adviser. They saw the good and bad with our household finances. I did not need or want their advice on every decision, but they gained security knowing who was managing our assets and that I was thinking — not just about tomorrow but about the long-term welfare of my wife and their mother.
We now have grandchildren and of course, we have to continue to give this message to those children. They range in age from 3 to 9, and in each case I am attempting to live my life as openly with them as I did with our sons. I look forward to that time when one of the grandchildren asks me to play catch, or ride our bicycles, because I know in those times, the lifelong questions about chronic illness are sure to arise. When they do, I will be as open as I was with my young son all those years ago. Because being open both in how I live, and what I say is the only way I know to be.
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