'I was afraid to make a mistake, so I hid behind the camera'

By Louise Kinross

Sweet Dreams for Chiyo is a film that follows the Ehara family when their toddler Chiyo is diagnosed with Type 1 diabetes. Parents Rhiana and Kaz are filmmakers, so Kaz gets behind the camera as the family—which includes Cai, then three months—adapts to checking Chiyo's blood sugar around the clock and counting every carbohydrate she eats. Missing a hypoglycemic episode—when blood sugar dips dangerously low and the person requires immediate sugar or a high-carbohydrate snack—could be deadly. The film follows the family over a six-year period and airs on CBC on Sunday, February 4 at 9 p.m. BLOOM interviewed Kaz about his role as dad and filmmaker.

BLOOM: Why did you initially begin filming your family when Chiyo was diagnosed?

Kaz Ehara: I think this was my initial coping mechanism. When something unknown happens to me or my family, I often capture it by image. I trained as a photojournalist. I have a Japanese family and when my grandfather developed dementia I started filming as a way to understand what was happening more objectively. I discussed with Rhianna capturing our daily life, and I think we also used the filming sessions as an outlet to express our fears and feelings. A lot of the interviews were conducted at night after the kids went to bed.

BLOOM: We quickly see the strain in the film of monitoring, weighing and recording everything Chiyo eats, and late nights where Rhiana is still awake at 3 or 4 in the morning. I think it’s common in families with chronic conditions for the mother to jump in and become the expert and do all of the health-related tasks, and it’s sometimes harder for dads to find their role.

Kaz Ehara: Rhiana was dealing with the daily treatments so beautifully, and she was definitely comprehending the situation much better than I was. I started losing some confidence, especially in the beginning. With Type 1 diabetes, the stakes are high. If we miss one check at night, it could be fatal. The fear was there. I think mainly I was afraid to make a mistake, so I hid behind the camera.

I think I said in the film that, without realizing it, I started to abuse my position. I was obsessively filming, because that became my coping mechanism.

BLOOM: Well, I think that’s understandable, as it was something you could do well.

Kaz Ehara: I started adding more pressure on Rhiana and now I know it was wrong. I was a filmmaker, and if I’m filming, I’m working. That’s how I justified my actions when I wasn’t supporting her enough.

When Chiyo was born, I changed diapers and fed her and was able to be independent with her. I would compare that with my childhood in Japan with my father, who left for work early in the morning while we were asleep. Because I’m self-employed, my hours are much more flexible. In comparison I thought I was doing really well.

But when Chiyo’s illness hit it put a lot of stress on the family. I didn’t realize the family was close to falling apart. When Rhiana would cry for help, I couldn’t hear her voice, because I was too busy listening to my own inner voice thinking ‘I’m also tired and I’m also working hard.’ I would keep filming, but without any desire to actually watch it.

One day my friend asked how things were going and I decided to watch some interviews. They were emotional and capturing Rhiana’s feelings. It was almost like watching someone else’s life on the screen in a very objective way. I had no baggage attached to me. My inner voice wasn’t there, and I suddenly realized ‘Oh my gosh.’ I felt a pain. That was the turning point. I wanted to change.

BLOOM: Did you or Rhiana have contact with other families whose children have Type 1 diabetes? I don’t recall that in the film.

Kaz Ehara: We had some mixed experiences with that. Our primary reason to get in touch with parents in our community is to get the latest information on technology. We decided that to keep a happy family, we couldn’t let diabetes becomes the main priority in our life. If we started fixating on diabetes care we would neglect our relationship as husband and wife, and as parents. We had very limited mental space in our brain and, for us, we needed some distance.

BLOOM: So you didn’t want diabetes to become the only focus.

Kaz Ehara: I think the word has a strong power and if you talk about certain things over and over again, that becomes part of your identity. We didn’t want our daughter to feel like her identity is with diabetes. We wanted to focus on who she is, and the diabetes is always there to come along with her. We never neglect diabetes or ignore it. But we needed to keep a healthy distance for our sanity, and so we can focus on the bigger picture of keeping our family as happy as possible.

Maybe we are unique in that way. We didn’t want to be 'diabetes parents.' We wanted to be parents first. We have another son who doesn’t have diabetes and we needed to have a bigger perspective than that.

Rhiana was very insightful in that her parents got divorced, while my parents stayed together. I didn’t know the warning signs for divorce, but she said family begins with a strong healthy couple as a foundation. If we neglect our relationship, then the family shakes. When our family was almost falling apart, I was only caring about my sanity and making excuses. I’d say: ‘We don’t have time to go out for a bite’ or ‘We can’t hire a babysitter that we can trust.’

Since then, we started increasing our comfort zone, and suddenly we discovered a babysitter who has Type 1 diabetes. And we started to see that when we changed our attitude, things we thought weren’t possible were. Recently our family went to Mexico for two weeks backpacking in a rural area. It took a lot of preparation, but our world is widening again.

I think I didn’t want to be part of a parent group that was focused only on diabetes.

BLOOM: In one of the scenes in the film, Chiyo needs her insulin pump changed right away—rather than at night when she’s asleep. And she’s crying and hides under the table and begs her mom not to do it. Even your dog Ruby looks really upset. How do you manage those moments when you need to do something that hurts Chiyo, but that in the long-run is necessary to her health?

Kaz Ehara: I was afraid and I had no idea what to say to comfort her. I think I was hiding behind the camera. And even I looked at my little son that day and observed he was much more of a brave participant than I was.

BLOOM: Do you and Rhiana do anything specific to cope with stress?

Kaz Ehara: We try to exercise. Now, I’m able to be independent when it comes to the diabetes care, so we try to give each other space as much as possible. For example, Rhiana went to Guatemala to see her friends who were teaching there. And I went to Japan. Our coping mechanism is to see the world as bigger than ours. We had to come to the realization that what we were dealing with is not the end of the world.

Another thing we try to do is not to fixate on doing everything perfectly. There are over 100 factors that can affect blood sugar, including hormones and emotions. We can’t be reactive to each little incident, but try to see more of the bigger picture. We need to tell each other we’re doing a good job.

BLOOM: The film covers diabetes from a sibling perspective. We can see how knowledgeable Cai is about his sister’s care, and how he often tries to comfort her. But we also see him feeling sad and resentful because Chiyo gets candies as ‘medicine,’ or seems to get more attention than he does. Is there anything you do to meet Cai’s unique needs?

Kaz Ehara: Part of our strategy is that we try to separate the kids as much as we can. For example, we take them out separately, so Cai can have some free time and space separate from the disease.

Rhiana will also ask Cai: ‘Are you tired of being on our team?’ Because we ask him to be on our caregiving team and we need extra eyes to support Chiyo. But before being part of a caregiver team, he’s a child first, and we want to make sure we don’t screw up that priority.

BLOOM: Later in the film you take the night shift and are up till 3 in the morning because Chiyo’s blood sugar is very low.

Kaz Ehara: Usually I took the morning shift and Rhiana stayed up late, and that’s partially because she was a night owl to begin with and I was more of a morning person.

The problem is that sometimes you can’t bring Chiyo’s blood sugar level to the point where you feel comfortable to sleep until 3 or 4 in the morning. We have no idea why the blood sugar is acting this way, but we can’t leave it. If it’s too high, you worry about long-term complications and if it’s too low—this could be fatal.

It feels lonely when you’re the person most responsible. We’ve given up on the idea that it will be easy at some point. We have to accept that it is what it is. Acceptance is very key. In the early days, we kept changing technology with the hopes that it would make things easier. But we only got more data, and not the ability to analyze the data. Too much data is overwhelming, and just makes you fixate more on diabetes.

BLOOM: There’s a moving scene where Chiyo is going off to school carrying a large yellow box for her needles. And Rhiana talks about how she feels like a freak when she’s the only mom who has to stay at birthday parties to count Chiyo’s carbs. How do people who don’t understand diabetes respond to you out in the world?

Kaz Ehara: In the beginning, birthday parties were very difficult. We’d have no idea what food was going to be served, how many carbs were in each food and also, people usually serve buffet style, so we didn’t know how many portions of the items our daughter would eat. We could have talked to the parents before the party, but we didn’t want to be in the way. Rhiana created an art out of carb counting and now she can get in and out quickly.

In general, people have responded very nicely to us. We go on all of Chiyo’s school trips because the nurse can't, and we see how the other kids are helping and are curious about her condition. Chiyo’s friends are very empathetic.

One of the things we worried about is that Chiyo is in a portable outside the main school building. We worried about when she might have to walk to the bathroom, if she got weak. The school created a special buddy system so that whenever they go out of the portable, they go in twos. We are very fortunate with the people around us.

BLOOM: Are there ways that Chiyo’s diabetes has made you a stronger family?

Kaz Ehara: I think we definitely built up a resiliency and became stronger as individuals. I think we also became more sympathetic to others who have different conditions. We talk with our kids about how everyone has something to deal with. We’re not the only ones facing a challenge, and we can help other people. Overall we became stronger as a family because we were dealing with the same challenge as a team. The more experience you have dealing with conditions outside your comfort zone, the more you gain confidence.

BLOOM: What did you learn by filming the movie?

Kaz Ehara: What I learned most was that in order to see things clearly or objectively, I had to be very flexible about the way I’m thinking about myself. One of the things I try now, when Rhiana needs to talk about things, is to be almost silent inside my brain. Instead of trying to understand in my mind, I’m trying to feel her pain.

The biggest thing I learned was that she doesn’t need my advice. She’s the one understanding her situation and her coping mechanisms, but she still needs someone to feel the same pain, or share the experience.

By looking at the footage, I could see that whenever she said something to me, I would say ‘You should do this.’ Rather than giving her reassurance—‘Yes, of course you can do that’—I was giving her opinions.

So now I try to clear my mind, almost like a white canvas, so I can be vulnerable to feel her emotions. Rather than listening to my brain analyzing and coming up with a solution, I try to create a field of empathy towards her.

That’s what I learned from looking at what I was doing in front of the camera.

BLOOM: What do you hope viewers take from the film?

Kaz Ehara: I hope fathers who have a child with a chronic illness, who maybe feel their contribution isn’t enough, that they can project themselves into me and feel the mistake I made. I think mothers in our society carry much more expectations and stress than fathers, so hopefully this film will open the eyes of fathers a bit and make them think about what kind of a father they want to be.