When type 1 diabetes strikes a child, parents are never prepared for the enormous changes the disease brings to everyday family life. Watching every morsel of food that crosses your child’s lips, calculating insulin doses in your head, worrying about low blood sugar while watching them play… it’s something no one can ever fully understand until your own child is diagnosed. It’s stressful, it’s exhausting, and it makes everything more difficult.
But, as my own mother said in the days after learning our 6-year-old son Miles had type 1, this is your new normal.
“You’ll adapt, make changes to your routine, and before long, it will be second nature,” she said. “You’ll see.”
That’s an overly simplistic view, coming from someone who was trying to make us less anxious, less fearful. But like it or not, she was right. My husband and I had to accept this new regimen and incorporate it into our family routine. We’d count carbs, track insulin, poke Miles’ tiny fingertips, and hold our breath, hoping we were doing it right and that he’d be okay. We’d adapt to our new normal, just like Mom said. It was the scariest, most overwhelming thing I’d ever had to do.
That is, until we got divorced.
When Miles was diagnosed in late October 2013, my marriage was already in a rocky place. We were distant from one another, and part of me thought this new challenge would bring us together. We both loved our son and needed to learn everything we could about this disease. We needed to take care of him, together, and that would take teamwork. Could diabetes be the activity we never took up together? Perhaps a shared passion for advocacy or learning about the latest technologies and therapy? Ever the optimist, I had high hopes.
But instead, we struggled, and three years later we were finalizing our divorce. While diabetes management is not the reason for our demise, it certainly didn’t help in any way. With an amicable agreement to share custody of the children 50/50, our family life was about to change drastically, once again. Another new normal.
Co-parenting in two households is complicated and challenging. It requires vigilant organization, communication, and understanding, which is no easy task when you’ve just decided you no longer want to be partners. Adding diabetes management to the mix is downright daunting.
When we first separated, I had mixed feelings about managing diabetes on my own. On the one hand, I had always felt left out of a lot of the day-to-day decisions, including meal preparation, insulin pump site changes, insurance haggles. I was employed full-time outside of the home in a city 75 miles away, so my husband handled most of the kids’ needs while he built his own business from home.
Yet, despite the fact that my husband had been trying to help by taking on the burden of managing Miles’ diabetes, I was resentful of being left out. It was something that I truly wanted to be more involved with but didn’t know how. So, when we first separated, I had a lot to learn, but I finally felt like I was doing the job I was meant to do, as Miles’ mother. It was a silver lining, for sure.
One thing we struggled with when living together was communication, yet somehow, being separated forced us to do better in that regard. We soon fell into a groove. We kept each other informed of major highs or lows, asked each other questions about how to manage certain situations (trampoline park birthday parties come to mind!), and we tried to attend endocrinology appointments and school 504-plan meetings together, to be sure nothing was lost in translation.
Living apart also became a major lesson in keeping track of supplies. How did people do this? Was there a separate prescription for insulin so that both homes had one on hand? Who would keep on top of test strips, continuous glucose monitor (CGM) sensors, and pump supplies? Miles’ dad always kept the supplies at his house, but if Miles showed up at my house without something, it meant a long drive across four towns to get what he needed. We still struggle with this issue sometimes, but we’ve gotten a lot better over time.
School management was also something we had to rethink. We wouldn’t expect the school nurse to keep track of our parenting schedule, so we soon came up with a group text system by which the school would always contact us both at the same time, and if one of us replied, the other person would know. Likewise, if one of us would be unavailable for an extended period of time, the other would be extra aware of those calls or texts coming in. We also both saw Miles’ blood sugar trends on our phones via CGM and could be equally involved or ask each other if we had any insight.
The thing I struggle with most about managing diabetes with my ex-husband is that diabetes requires so much in-the-moment decision-making, and there is also so much to be learned from daily numbers and experiences. I look at a blood sugar spike on the CGM on any given day and wonder, what happened there? Did his pump disconnect? Did he eat something sweet and forget to bolus? It’s very hard to make ongoing changes and improvements to Miles’ overall diabetes management without having insight into every single number or event. I ask when I need to, but I back off some too — because no one wants the diabetes police interrupting their time with the kids 24/7.
The best we can do is to keep each other informed of what is going on, assure each other that we are on top of it, and stay connected and supportive of one another — despite the fact that we are no longer married. After all, it’s what’s best for Miles, and that’s something we will always agree on.
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.