Sharing the Responsibility of a Kid with Type 1 Diabetes

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In January 2011, everything was perfect. I was married to my college sweetheart, Andrew, had a beautiful home in Maine, two healthy children and one on the way. Everything in my life had come pretty easily until then. Life was good.

But one snowy Wednesday just after noontime, I got a text from Andrew and everything changed.

“Just got canned. On my way home.”

This message was probably not the best way for Andrew to break the news to his seven-months-pregnant wife. But communication had never been our strong suit.

Like so many others, Andrew lost his job to corporate downsizing during the recession. We had seen the writing on the wall for months ahead of time.

Always the optimist, I tried to embrace Andrew’s presence at home in the months leading up to and following our son’s birth. I had never had that kind of help when my older kids were born, and as I recovered from a first-time c-section, I was grateful for his help.

As we settled in as a family of five, Andrew spent hours each day on the job hunt — but no one in his industry was hiring. A few months later, I took a temp job at a local wholesale food business, and later a full-time position as a church administrator in our community. He stepped up and took over responsibilities at home, and my job was fairly flexible. But still, I saw this as a temporary fix — just something to supplement the unemployment income until he got back on his feet.

But when the unemployment checks stopped coming eighteen months later, we knew we had to do something drastic, and fast.

“I could always go back to the city,” I offered hesitantly, half hoping he’d tell me that was out of the question and that he’d figure something else out.

But instead, he nodded in agreement. My skills in marketing and communications were in higher demand, and I could earn the salary we needed by returning to my former work in the Boston financial district, 75 miles away. A few weeks later, my conservative navy heels click-clacked across the marble floor of a downtown high-rise lobby. I was reporting to work as a proposal writer, picking up where I had left off ten years earlier.

The job was exactly what I had remembered, however, I was different. And Andrew was now home, doing everything he could to manage our kids, our household and a small business he had started while I was out of the picture most hours of the day.

The role reversal was a means to a financial end, but it drove the two of us apart. Perhaps we were both missing our old lives — his as the provider who went out the door every day, and mine as the involved parent, focusing on the kids and keeping things running smoothly at home. We barely saw one another, each of us focused hard on the tasks at hand. We were tired, we were resentful, and before long, we were barely speaking to one another.

A little over a year later, our son was diagnosed with Type 1 diabetes.

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Miles had been a healthy, happy six-year-old when suddenly he began wetting the bed and running for the bathroom everywhere we went. He was diagnosed early on, which was a blessing, but also meant we didn’t fully comprehend how this chronic illness would truly affect our lives. We returned home from his two-day stay in the hospital dazed and confused by all that we would have to do to manage this illness.

While I had a lot to learn, one thing I knew: Andrew and I needed to work together for our son. Looking back at it now, I remember that I had been trying to find a hobby or interest Andrew and I could share to get our marriage back on track. When Type 1 diabetes entered our lives one week before Halloween in 2013, I thought, Maybe this is it. Maybe diabetes will be our common bond.

Instead, we struggled.

As Andrew had grown accustomed to doing everything at home, he took on Miles’ diabetes himself, from day one. He did all of the nighttime blood sugar checks and treatments, only sleeping for two hours at a time. He thought he was doing me a favor, letting me sleep so I could go to work the next day. But the next morning, I wondered what had happened in the night, frustrated by being left out. At the same time, he was short-tempered and impatient due to exhaustion.

The same happened during the school day. Andrew fielded questions from the school nurse, chaperoned field trips, and managed all of his appointments, prescriptions, meals and boluses.

I tried to be more involved at home, but amidst the chaos of three kids, it was often just easier for Andrew to do certain things faster. I shared my advice for what to pack in Miles’ lunchbox, but his dad was on auto-pilot. I felt like a nag, but this was my child too, and his health was at stake.

A year later, I was offered a professional role in the Type 1 diabetes community, which increased my knowledge of this disease ten-fold. But still, I was largely un-involved in his care. I sat in meetings at work with other parents and people with Type 1, and often couldn’t participate in their discussions because I was so disconnected from his everyday care. And that made me crazy.

After much soul-searching, marital counseling and hard conversations, Andrew and I have since separated. Type 1 diabetes was not the cause of this decision, but more the last in a series of hurdles our marriage just couldn’t overcome. But while nothing about divorce is easy, the simple acknowledgment that we weren’t working well together anymore has actually strengthened our ability to tackle diabetes, and parenting in general, as a team.

Amy Bevan

You’d think that living in two households would give us the freedom to do things our own way, and cause even more problems in consistency for Miles’ care as well as our family as a whole. But actually, we are communicating and collaborating better than ever. Because we share responsibilities more equally, giving one another time to parent, time to work, and the space to figure things out on our own, each of us are more sympathetic to the other’s perspective.

Instead of placing blame on Andrew for the pasta dinner that likely caused high blood sugar, I can now understand how hard it is to get a picky eight-year-old to eat the perfect “diabetes-friendly” balanced meal. And he now knows how frustrating it is to be apart from Miles, not knowing how his numbers are at night or whether he is safe at a friend’s house for the afternoon. We text each other blood sugar numbers and boluses, we use data tracking apps like Dexcom Share and Glooko, and most of all, we lean on one another when we need help.

Type 1 diabetes requires so much in-the-moment decision-making for parents, it is often the primary responsibility of one parent. But it doesn’t have to be this way. Whether you are co-parenting from the same household or not, having empathy for the other’s perspective and being willing to work together will make managing this disease easier for you all.

Andrew and I may not be the perfect couple we once thought we were, but we are still a team, going to bat for Miles and our family. And we are hitting it out of the park.

Amy Bevan is a nationally published journalist, communications professional and diabetes advocate whose young son Miles was diagnosed with Type 1 diabetes in October 2013. She currently works for T1D Exchange as  Content and Community Manager for MyGlu.org, an online research and support community for people touched by T1D.  Amy is also a triathlete and two-time charity marathon runner for diabetes research and advocacy.  She works in Boston and lives in seacoast New Hampshire. 

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