I’m currently working on my first book, a guidebook of sorts for young adults living with diabetes. One of the topics the book touches on is the relationship dynamic between an PWDs and their parents. I’ve touched on the topic here with interviews with both my parents.
Today, I’m sharing a guest post from John Crowley, the Director of Communities and Content at my former employer, Alliance Health. He offered to write about his perspectives as a parent of Josh, 21, who has recently gone from being a CWD to a PWD. I hope this helps other parents who are dealing with this transition, and of course, us adult PWDs.
We like to say that “kids with diabetes are still kids.” Well, parents of adults with diabetes are still parents.
A Guest Post by John Crowley
My journey as a diabetes dad began in a pediatrician’s exam room in West Valley, Utah, in August of 2000. My wife and I were sitting there with our eight-year-old son, Josh. It was only in retrospect as we looked at photos from that summer that we realized how emaciated he looked. None of us had really paid attention to the weight loss. But it was the insatiable thirst and the constant peeing that drove my wife to seek some answers.
And there we were, the three of us sitting in an exam room in the silence that followed the doctor’s matter-of-fact, “Josh has type 1 diabetes.”
I remember so distinctly those next three days in the children’s hospital. Josh was exactly what you would expect in an oldest child. He was very bright and pre-programmed to please adults. The nurses and doctors were instantly big fans of Josh. He soaked up instructions and information about this new disease like a sponge. They were so positive, showering him almost constantly with compliments and praise. I will forever be grateful for the way they helped Josh feel equal to the task of managing diabetes.
I won’t lie to you and tell you that we had no rough times in those early years. But for the most part, Josh was a model patient. Within a few weeks, he had insisted in doing all of his own injections. As a third grader, he could calculate his own correction doses and draw up his own syringes. I became more of a diabetes parental adviser. We maintained a pretty good relationship around diabetes. I was allowed to give gentle reminders and advice. But mostly, I let him run the show and I only got involved when he asked for my help or when I saw him making a serious error. I can say that this style of relationship seemed to work really well. For years, Josh maintained spectacular A1c results. I remember distinctly when Josh was about 11 years old, his endo brought a med student in during a clinic visit to prove to the student that young kids actually could achieve great control.
That was then.
As we approach Josh’s 14th diaversary, he is no longer a child. He’s an adult with a life of his own. He’s a college student. He works part time. He goes on dates and hangs out with friends. He’s focused on the things he loves: college football, water skiing, and planning the next time he can be with his friends.
Life is fun and busy. I’m proud of him and grateful for the genuine person he is growing into. However, I have to admit that I miss terribly my important role as diabetes parental adviser. Josh has lived with diabetes long enough that he doesn’t seek out my advice anymore. Ever. And my permission to jump in when I see he is making a serious error? Well that actually ended sometime in high school.
It’s not that he has lost all control of his diabetes. His control has been OK. At least, I think it’s OK. Now that he’s an adult, my only information about how he’s doing comes through him. I don’t get to sit there with him during doctor appointments—like I did for so many years. I don’t get handed the A1c report. I’m not there when the doctor reviews his blood sugar logs (or lack thereof).
On the one hand, I completely understand the feeling of invincibility of being a twenty-something young man. His whole life is in front of him. He’s strong. He’s young. Worries about retinopathy, kidney damage, or heart disease seem way beyond the horizon. In his view, diabetes is a pain in the butt that deserves as little attention as can possibly be given to it.
And that’s precisely why though I completely understand, I also worry about him. I’m his dad. That’s part of my job. And just because he’s taller than me doesn’t mean that I’ve stopped paying attention to his testing habits, food choices, or how much exercise he’s getting. And the truth is, no matter how much attention he was giving to his diabetes, the dad in me would probably always think that a little more attention wouldn’t hurt.
But I know that the trust we developed over the years of his childhood—me trusting him and him trusting me—could be undermined by one unwelcome comment. I cannot be the “diabetes police” no matter how much I may want to. It simply isn’t my place. It isn’t my disease. It isn’t my life. And the truth is even though I’ve had a very intense front-row seat to living with diabetes, I’ve never been on the stage. I am a spectator.
It’s not an easy place to be as a parent. I will probably always long for the days when we counted carbs side-by-side or filled out log sheets together. I will miss the days when I had a little more peace of mind about his health because I felt more involved. But the truth is, I know that’s not the parent Josh needs now. And so we’ll find our way through this new phase of life. And I will hope and pray from my seat in the front row that he continues to do enough to take care of himself.
If you would like to guest blog for The Blood Sugar Whisperer, please email me!