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Behind the Lens
Having A Child With Diabetes Meant I Had To Step Up As A Parent
By Kaz Ehara, Filmmaker

As I watch the film I’ve spent six years making with my wife, Sweet Dreams for Chiyo, there are lots of times when I watch my behaviour on screen and cringe.

I filmed hundreds of hours of footage as our children grew and we learned to deal with our daughter’s diagnosis of Type 1 Diabetes. Although I captured a lot of beautiful and vulnerable moments in our family — some of them showed me at my worst. Like the time my wife and I are enjoying some lovely wine and cheese, and I ruined a rare date night by pulling out my camera to interview her about diabetes.

I spent hours filming my wife doing all the work

There are hundreds of hours of footage that don’t appear in the documentary. I filmed everywhere we went from Chiyo’s ballet lessons to diabetes clinic appointments to an entire multiple-day drive to Cape Breton from our home in Hamilton. When Rhiana jokes in the film that the kids have started listing “Camera Ehara” as another family member, she wasn’t exaggerating.

Rhiana and I were both overwhelmed. While she threw herself into learning all that she could and researching the illness, I shut down.

Much of this footage wasn’t used because it has no context and tells no bigger story. It’s just hours and hours of me filming my wife doing all the work. In two-parent families with a child who has a chronic illness, it is common for one parent to be the default parent and the other to act as a backup. In our family, Rhiana was the driver of Chiyo’s care.

Chiyo was diagnosed a month after she turned two when our son Cai was three months old. Rhiana and I were both overwhelmed. While she threw herself into learning all that she could and researching the illness, I shut down.

SCENE FROM THE FILM: "I don't want you to film me anymore."

When it came time to transition Chiyo to an insulin pump instead of injections, I used my dislike of technology — yes, there are Japanese people who aren’t good with technology — to put off learning how to use it and perform the site changes that needed to be done every two days. My comfort zone was behind the camera.

I felt that I was doing enough because I was very active in other aspects of raising our kids and maintaining our home, but I underestimated how hard it was for Rhiana to carry all the diabetes care. Because there is so much work involved in managing Type 1 Diabetes, my unwillingness to get involved meant that Rhiana couldn’t go anywhere away from our daughter Chiyo for very long.

She will say that the situation was more nuanced than I am telling it. As the default parent, she felt safe being the one in charge, and she just didn’t have the energy to teach me more. The stakes were too high to allow me to try to do something critical like change a pump site when our four-year-old daughter was weeping under the kitchen table in an attempt to avoid the painful process entirely. I was too frightened to figure it out on my own.

When I reviewed my footage, I knew I had to step up as a partner

I remember the moment that I realized that I wasn't a supportive husband. I had been filming for several years but, tellingly, I never had any desire to watch the footage. One of my good friends asked me how the film was going, so I figured I’d better sit down and watch what I’d captured. When I watched some interviews I’d filmed with Rhiana in the middle of the night; I saw her pain and isolation with new eyes. It was time for me to step up.

I began taking Chiyo on my own to some of her doctor's appointments. I attended events for parents like us and learned a lot from other families dealing with Diabetes. I watched tutorial videos again to learn about the technology that we were using to care for Chiyo’s illness. Over time, I learned how to do all of the diabetes-related tasks that Rhiana can.

Even though it’s still hard and the road is long, the love and support we now give each other will get us to the end.

With some encouragement, Rhiana went to Guatemala for a week to visit a friend who lives there. We had an unfortunate family Facetime chat during which our son Cai, who had contracted the stomach flu, vomited into a bag containing all the handmade Valentines that Chiyo had just finished making for her class. You can picture the scene: Cai green and puking, Chiyo weeping bitterly, and me — jealous — glaring at my wife as she sat under a beautiful avocado tree in the sun. Chiyo got the flu as well — a dangerous thing for people with Type 1 Diabetes. Even though I had to take her to the hospital, I resisted my urge to ask Rhiana to return early. It was a challenging week for me — but I made it through. And my wife had a wonderful time and came home rejuvenated.

As I stepped up as an equal caregiver and partner, our family became stronger and healthier. Now that Chiyo is growing bigger and becoming more independent in her diabetes management, we are learning to relax a bit. Even though it’s still hard and the road is long, the love and support we now give each other will get us to the end.