Musings On Being the Parent of an Adult Type 1 Diabetic

Sue May 2013_Head SquareWhen I started blogging at Test Guess and Go, in my first blogpost I introduced myself as the mother of a boy who was diagnosed with diabetes in 1975 at the tender age of 4, and I recounted the trials of those early days. It has now been 39 years since that diagnosis day. I also shared that I became a Type 1 diabetic in 1988. While I would never wish diabetes on any parent, I do believe that my diabetes has helped me to understand what my son is going through and why I need to not be critical when he experiences hypo and hyperglycemic episodes. I realize that in spite of our best efforts, diabetes has a mind and life of its own.

When your child is young and in your care, you can somewhat manage his day to day diabetes control. As he grows up, you encourage him to learn to take charge of his health and become independent. That is a parent’s job. And when he goes away to college, you are a little apprehensive, but realize that it is time to let go.

A couple of years after Steve graduated from college, he moved to New York City to seek employment in the theatre, his chosen profession. In those years before he acquired a pump and continuous glucose monitor, there were many close calls of hypoglycemia episodes. In July of 1999, my husband and I had spent a wonderful weekend away celebrating our 30th anniversary. When we returned home, there was a message on our phone from our daughter informing us that her brother had had a hypoglycemic episode while on his way to the subway. He had collapsed and broken his leg. The next morning we drove to NYC, picked him up at the hospital and brought him upstate to live with us while he recuperated. In January of 2000 we drove him back to his Queens apartment. In those days his diabetes was out of control and it took him longer to recuperate than it would now.

In May of 2000 his eyes started bleeding (proliferative retinopathy), and he began what would become ongoing laser treatments on both eyes. At that time he gained full-time employment with health insurance benefits at NYU and had to give up his dream of acting.  A couple of years later he found out that he had neuropathy. Two years ago he moved back upstate and he hasn’t needed laser on his eyes since then. I pray that it continues. His eye doctor says it’s due in part because he is not experiencing the level of stress he had while living and working in NYC.

Grow Up2Because Steve lives alone, there has been no one to keep an eye on him and we have to have faith that he will be okay. In essence, we have had to Let Go and Let God. And let’s face it, once your child is born, no matter what his circumstances and health are, you will worry about him for the rest of your life. Unlike the animal kingdom, I believe we are genetically hardwired to do this. And it’s OK as long as we let them manage their life on their own without trying to interfere. I confess that I sometimes struggle with this. Then I remind myself that if he wants my advice, he’ll ask for it, and if he doesn’t ask, he doesn’t want or need it.

It makes me sad when I read the stories of mothers and fathers today who are learning to cope with their child’s Type 1 diagnosis, but I take comfort knowing that in recent years there have been many advances in managing diabetes, including pumps, continuous glucose monitors, blood glucose meters, carb counting, new insulins, etc. There has also been much research into an artificial pancreas and we are now seeing ongoing trials. It is my fervent hope that when today’s Type 1 children are my son’s age, they will not have the complications that Steve has experienced and their parents will not have the heartache of seeing their child suffer from these complications.

12 thoughts on “Musings On Being the Parent of an Adult Type 1 Diabetic

  1. I both can and can’t imagine letting my CWD go. After that broken leg episode, I’d want him near me for at least a few months–just for my own sake. But I guess when they’re adults, we don’t get to pick! Painful.

    • Hi Katy,

      When he broke his leg, we didn’t get a chance to talk to him, we just drove to Bellevue Hospital and surprised him. And he was very relieved to see us. We live 30 minutes south of Rochester, and he now lives 10 minutes away from us. We couldn’t be happier.

  2. Great insight Sue. It must be tough sometimes, but it sounds like you’re doing all the right things. Thanks for sharing.

  3. I think that it is way easier having Type 1 than being the parent of a child with Type 1. Of course you got the prize and get to do both!

  4. Great job Sue, and yes, I am afraid that you got the booby prize!!! I recently discovered just how much I was asking of my daughter expecting her to wake up and deal with her Dexcom alarms at night. I took over that job now, and am always very happy when I get a full night’s sleep these days.

  5. What. great blog. I always say that once you are a parent, you never stop worrying about your kids no matter what age they are. Being the parent of a diabetic has to be so difficult. I know that being the wife of one is….I can’t imagine being the parent of one. I worry every day that either or both of my kids will inherit their father’s diabetes and also hope tht it’s not passed down to my granddaughter. This is one of the reasons I became involved in the CGM issue. I’m so happy that you decided to write this blog and did such an excellent job expressing what it’s like being Steve’s mother.

  6. Thanks for sharing! It’s nice that you were so involved with your son. My parents weren’t involved at all and I wish they were more. I was diagnosed with Type 1 when I was 9 and my mom still thinks if I exercise, my diabetes will be cured. Your son is lucky to have someone as caring as you! Hopefully some of those episodes are decreased with the newer technology.

  7. Kelley,
    He and I were just discussing yesterday how much the pump has made a difference in our control. He has several basal rates, and as he mentioned, having a continuous drip of insulin as opposed to using Lantus with a duration of <24 hours makes a huge difference. Thank God for the newer technology, including the ongoing trials of the "bionic" pancreas!

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