Stepparenting a Child With Type 1 Diabetes

Becoming a stepparent to three children isn’t easy, especially when you’ve never had children of your own. The messes, the early mornings, the monsters under the bed — no matter what age, kids are a lot of work, and no one is ever fully prepared for the emotional, physical, and mental demands that having a family brings.

But when I first started seeing my now-husband Kurt, I had something extra to bring to the table… something even more daunting than three children. My son Miles has type 1 diabetes.

“My grandfather had that,” Kurt said, when I shared this rather large aspect of my life as a single mom. He recalled how his grandmother gave his grandfather insulin shots and how they always had candy in the house. Okay… so he knows something about it, I thought. While his memories were fuzzy, he knew just enough to understand the basis of what insulin dependence meant, and he was curious to learn more.

As our relationship progressed, Kurt learned a lot about Miles’ condition, but it was strictly from my perspective, since he would not meet Miles or my other two kids for months to come. He heard the continuous glucose monitor (CGM) alerts and he’d ask what was going on. He waited as I took the call from the school nurse. He saw how much time I took off from work to attend doctor’s appointments or 504 plan meetings. Kurt was interested and supportive, asking questions about everything from food choices to the technology we used to the way the school helped our family manage Miles’ blood sugar. It was, in a word, amazing.

All of this experience came in handy when Kurt began spending time with us as a family. However, it was a lot more difficult than either of us expected. For one, blood sugar never behaves the same way twice, and like me, Kurt found it difficult to accept that you could not simply control Miles’ numbers by taking a specific action like dosing insulin. Illness, stress, environment, adrenaline… all of these things impact a person with type 1 diabetes, and it’s pretty tough to predict or manage when something is off.

One of the first times we co-managed diabetes was at a country fair. Between the less-than-healthy food options (fried dough, anyone?) and my thrill-seeking kids’ insistence on riding gravity-defying rides all day long, Miles’ blood sugar jumped up pretty quickly. It didn’t matter that we had limited the junk food, carefully counted carbs, and pre-bolused by 15 minutes. It was one of those times we did our best, but blood sugar didn’t cooperate. (But we still had a great time!)

Kurt worked in the consumer electronics business for 15 years, so getting him up to speed with Miles’ insulin pump and CGM was a cinch. But while he certainly appreciated how much easier both devices made our lives, he also noticed certain shortcomings. He was really surprised at how far behind diabetes tech seemed to be compared to nonmedical gadgets and devices. I’ve explained how regulated these devices are, and how long research and clinical trials take when they can influence someone’s health in such a critical way. He gets it, but still points out ways that things could be better. (Perhaps the man has a bright future in diabetes tech research and development!)

Co-managing T1D alongside me and Miles’ dad isn’t easy. As the newest kid on the block, Kurt says he feels like his opinion is the last one to be considered when problems arise. I can attest that it is probably the hardest thing about parenting in general — between two people, three people, or more. Everyone has a different opinion or way of doing something, and it’s really hard to come together and agree for the sake of the child. Because diabetes management is a series of moment-by-moment decisions, it’s really important to communicate and learn from one another’s experiences too.

With five years of diabetes management under our belts, Miles is now older and struggling to become more independent. We don’t always know the whole story when we see his numbers spike or find food wrappers behind his bed. Our biggest source of conflict is how we take action upon learning that Miles didn’t do what he was supposed to do. As so many other diabetes parents experience, it’s hard to know when he simply forgot or when he ignored his diabetes. Kurt came into our lives at the start of this stage, and I expect it will last until Miles’ late teens… or early twenties. We do our best to talk through the situation and come up with a united approach, but it’s not easy.

I know a few D-parents who say they do everything — every blood sugar check, every doctor’s appointment, every meal prep, every site change — without a partner’s help. I’m lucky to have not one but two co-parents helping to manage our child’s diabetes. I simply could not do this alone, and I’m grateful that both dad and stepdad are involved in Miles’ care.

As for our latest addition to the team, a lot of people must think, “Why would a man so willingly join a family like that, taking on the enormous responsibility of raising three children while managing one kid’s chronic illness 24/7?”

I don’t know the answer, but I think it has something to do with love.

 

Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.

 

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