In January 2011, I had everything I ever wanted: a loving husband, a beautiful home, two healthy kids with one on the way, and steady work as a freelance writer. At 35, everything had fallen into place, and life was good.
But one snowy Wednesday just after noontime, everything changed.
“Just got canned. On my way home.”
This short text from Andrew was probably not the best way to break the news to his pregnant wife that our lives were about to change forever. But then again, communication was never our strong suit.
Welcoming our son to the world just two months later, we had no health insurance and virtually no income. As we struggled to navigate the recession, I went back to work in the investment business, commuting 4-5 hours a day, Monday through Friday, from our home in Maine to downtown Boston. Andrew took on primary parenting responsibility while growing the small wine business he had started a few years earlier as a hobby.
The role reversal was a means to a financial end, but it was hard on our relationship. I missed my time at home with our children and my connection to our small town community. He was overwhelmed by managing the house, the kids and trying to run a business. 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 hardly speaking to one another.
So, you can imagine the difficulty we faced in managing our son’s type 1 diabetes when he was diagnosed in October 2013.
The New Normal: Family Life with Type 1
Miles was only six when he began wetting the bed regularly, looking for a bathroom everywhere we went and eating and drinking everything in sight. We were so busy, we brushed it off as a growth spurt and thought the bed wetting must be just exhaustion from his first few weeks of first grade. But his pediatrician was concerned about diabetes, and in one quick office visit, his blood sugar showed Doc was right.
With this newest challenge to our already stressful lives, Miles needed his parents to get it together, learn to communicate and work as a team. Looking back at this time, I remember seeing a silver lining. I thought, Miles’ diabetes could be the thing to bring us together. But instead, we struggled.
As Andrew had grown accustomed to doing, he took on Miles’ diabetes himself from day one. He did all night-time blood sugar checks and treatments, waking every three hours and letting me sleep because he thought I needed it more than him. 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. While I was at work, Andrew fielded questions from the school nurse, chaperoned field trips, and managed all of his appointments, prescriptions and pump site changes. I was largely un-involved in his care. And although his intentions were good, that made me crazy.
Navigating Type 1 Together
Because of my experience, I was curious how other parents approach their child’s diabetes, regardless of their own relationship or living situation. We asked the Glu community this question:
Type 1 diabetes requires so much in-the-moment decision-making, it is easier for one parent to take on primary responsibility. But it doesn’t have to be this way. If you’re struggling to manage a child’s diabetes with your partner or another adult, here are 10 tips that may help:
- Let It Go: Diabetes isn’t something you can control 24/7. Even when you do the exact same thing from day to day, results vary. Do your best, but accept the result and let it go. Tomorrow is a new day.
- Speak Up: Don’t assume the other person knows what you’re thinking, or is thinking the same things you are. Whether it’s meal planning, calculating a bolus or treating a low, share your thoughts and opinions.
- Keep an Open Mind: Be a good listener and be open to the other’s approach –There is more than one way to skin a cat – or stay in your child’s target BG range.
- Trust your Gut: You have more knowledge about this disease than you think. Don’t underestimate your experience and be empowered in those situations where you have to make decisions without the other person.
- Be a Team: Involving the other parent when you can will strengthen both of your experiences and your relationship, which will ultimately benefit your child’s overall health.
- Take Turns: Create a schedule and take turns being on diabetes duty. Not only will this cut down on miscommunication and confusion with other adults caring for your child, but it will also give you each a much-needed break.
- Suggest, Don’t Force: Share opportunities for education and networking (such as reading books, joining online communities, or attending events, fundraisers, and support groups), but don’t force. Everyone has their own way of learning and getting support when they need it.
- Lean On Each Other: No one understands what it’s like to be a diabetes parent than another parent. Vent, Scream, Cry and offer emotional support to one another — just not in front of your child.
- Inform and Be Informed: It’s not easy for both parents to attend doctor’s appointments. Discuss concerns ahead of time, and bring the missing parent’s questions to the appointment. Debrief afterwards to share results and insights from each visit, and consider switching roles next time.
- Be Consistent: Come up with some basic strategies for T1D management and support, such as pre-bolusing or not eating until your child with diabetes is ready, and follow them as a family as much as possible.
It’s been three and a half years since our son’s diagnosis, and I can honestly say, Andrew and I have come a long way in managing this burdensome disease, 24 hours a day. Today we communicate better, give each other more support and are both fully involved with his care. Regardless of where you are in your relationship, don’t be afraid to ask your co-parent, friends or other family members for support. Your child can’t face diabetes alone, and needs you at your best.