I had been diagnosed with diabetes around three years prior to when Allie was diagnosed. I think what hurt me was that I didn’t come down with the disease until I was 37 years old. And here’s a little baby that’s coming down with it, that has to deal with it. So that was very hard to accept.
Help from family members
I live only a couple of streets away from my parents. And they jumped up ready to help. My dad is a child psychiatrist. And my mother is a writer, so she was home. They both dropped everything and they came in to the hospital with us. I think that really made a tremendous difference, just to have somebody there outside the family. They were able to ask questions and they were able to hang out with Abby, my daughter. It was also hugely important for my husband to be there. John took time off from work and came right over to the emergency room as well. So let’s see, what does that make? That makes six of us facing it together.
Learning new healthy recipes
Karen, Billy’s mother, has been very, very good because I think inside she’s been a little angry that she couldn’t rely on us more. But she has decided that her role has to be as a coach. So without being angry, she’ll go over what we did all weekend, what we should have fed him, why that wasn’t such a good choice, what we could have fed him instead. I would say more than reading, it’s been through Karen’s patience that we’ve figured out how to take care of Billy. Also, I’ve learned a couple of recipes. I learned how to make a birthday cake out of Jello with whipped cream, and fruit. And when Billy comes over, I ask Karen to tell me what to make. I have snack plates in my house the way she does with carrots, celery, and peanut butter. Of course as Billy got older, it gets easier in some ways. In other ways he’s more rebellious and he’ll take things he shouldn’t, but that’s not my responsibility any more. As he gets older, it’s up to him and it gets much easier.
A team approach
I think the team approach is really key because you can’t look at your kid and say you have to exercise more and then expect your kid, especially if they’re by themselves, to go out and run around. If my son is running high blood sugars, or if we’ve had a particularly large meal, you have got to get off your own chair and go take a walk with your son. So what we’ll do is say, “Ok. That was a big meal. We’re going for a walk.” And my son might say, “Oh, I’m not really up for a walk. I’m too full.” And I’ll say, “Well, I’m really full too. That’s why you and I are going for a walk.” We don’t make it something like a punishment that he has to do himself, we just make it inclusive. We have all come up with a lot of games. Kids love to play games. So, you can come up with games in either in the basement or in your backyard. Or say “Gee, let’s go out and shoot baskets together”, or “Let’s go play catch”, or “Why don’t you show me how that skateboard works?” It really becomes a nice way to connect with your kids, when otherwise you might be just watching television or something along those lines, or not paying attention to your kid at all while they’re on the computer and you’re looking over your mail. Instead, the first focus has to be what is healthy for my child, and the nice thing is that at least that ends up being healthier for me and for my wife and adds to the whole parent child bond as well.
There is less time for us. I used to go to the gym three times a week. Now, I go once a week if I have time. I’m always tired because I have to check on him in the middle of the night.
I guess we’re lucky
I really wonder what it’s like for children that have diabetes in single parent families. Or they’re in a situation where their life is already really hard to begin with and then they have this on top of it. It just seems like it would be extremely difficult. So I guess we’re lucky because we’re a nuclear family and we have a lot of relatives nearby that can help.
If you do have relatives and family members that are nearby, have a check list or some kind of info sheet to orient other members of your family that aren’t doing all the direct care, but still need to understand the generalities of what’s happening. There’s a lot of science to it that big families probably have to learn to live through, but you can kind of boil that down. Maybe take the list that the school nurse gets and share it with aunts, uncles, grandparents and siblings.
We are a family that takes family vacations together and the ten of us go away. We now range in age from five to seventy three. So we have had to change our way of traveling to a more upscale way. We choose a place and it has to be near a hospital. It has to be a single air flight away because we don’t want Billy to spend a whole day in an airport and on a plane. We want to make sure that he has as little down time as possible. And there has to be a place that offers a menu. We don’t want to cook. We’ve tried cooking. The little ones, my other grandchildren, won’t eat what Billy eats. They want to eat their things and that puts a big stress on the whole family if we’re not eating the same food. So we have to go to a place that has some kind of a restaurant where they offer wholesome foods that Billy can order, plus things that the little kids can order.
When children grow up, they grow away from you. I would say that even though Karen and I are mother and daughter and saw each other all the time, we weren’t really intimate. You know, she didn’t confide her problems and day to day things in me. We were more like adult friends with a respectful distance. When Karen’s son, Billy [my grandson], was diagnosed with diabetes, it broke that down because when Karen couldn’t take it anymore, she would show up at my house and just start talking. And I would write it down on my computer so that I wouldn’t interrupt her, so that I wouldn’t offer advice so I could just be a sounding board. For about three years, I was her release so she didn’t have to confide her worries and irrational fears, and feelings of hysteria and everything in her husband, or children, or therapist. So that brought us closer together. And it also brought me and Billy’s sister, Abby, closer together because while Karen was so focused upon Billy, it became apparent that Abby had to take second best a back seat. So I started taking her out for lunch and doing all the shopping with her for clothes and stuff like that, driving her around, and baking with her. I was one of a number of people who reached out to the other child so that she wouldn’t feel neglected and ignored.
It increased my admiration for my daughter Karen and her husband John–especially my love for John because I saw how concerned and devoted a father he was. He’s always coached Billy’s soccer team. He just went to every appointment and would confer with Karen by phone several times a day. I just had an enormous respect for the conscious way in which they approached this and how they thought about it and how they came out with the idea they would be a “diabetes family” rather than setting Billy apart. It gives you this feeling of pride to know that you must have done a good job that your kid is such a caring parent and that she choose such a wonderful husband and that Abby would be so grown up and caring about her brother. I see too that it’s brought them all closer.
The importance of teamwork
With diabetes management, taking care of a child with diabetes is not something that one parent can do by themselves. There’s a tendency for fathers, especially if they’re the working father and the mom is either not working or working part time, to leave the diabetes care to the mother. That basically does not work. It’s too much for one person to handle both either physically or emotionally. It’s incredibly important that the father be as much of an equal team member as possible in diabetes care. Diabetes is not a disease that is easy to deal with. There’s constant recalculation and decision making. It’s not an exact science at all. So to the extent that you can talk to your spouse about that, it really makes the care much easier. You might have a certain reaction of what to do in a given situation and your spouse may have a different reaction, which is completely valid. Because giving insulin is such an important thing to do and can have such extreme consequences, the whole team aspect of it is extremely important.
We’ve met a lot of families that have been divorced because of diabetes. You know, it puts such an extra stress upon the family, upon the husband and wife relationship that they can’t handle it. They were probably there already, but we’ve seen a lot of families where divorce happens right after diagnosis. That’s horrible, really, because that’s exactly when your kid needs you and I think it’s really only through the team approach where fathers become an intricate part of giving your child the best care.
Help and love
I think your first impulse is to try to fix things and to somehow feel that it’s your responsibility to make things better, and I think that’s really the wrong way to go because you don’t know enough and because the kid’s already getting enough advice. I came to the conclusion that there are only two things you can do. One is to turn up the love. And if your daughter is not doing well and she’s losing her temper and if they’re fighting or whatever, just to be very, very accepting, approving and forgiving because the stress is terrible. And the other thing is to be available. My daughter Karen called one morning and said, “I can’t take it.” And I got dressed and went over and she went in the shower and screamed and cried. I said to her that anytime she needs me, I’ll cancel a date with a friend or anything that I can switch because my kid doesn’t ask for help unless she is really in need. I am committed to being there and I think that’s all you can do. Help and love.