A few months ago, I shared an interview with my dad about what it was like to raise me as a child with diabetes. Earlier this month, my mom was visiting for my birthday and I had a chance to sit down for a similar interview. Obviously my own thoughts and memories about growing up with diabetes are different from my parents. I hope you enjoy the interview!
If you’re interested, I also conducted another interview with my mom about non-diabetes related topics at my other blog, With Faith & Grace.
When I was first diagnosed, how did you deal with the first few months? How did you work through the diagnosis?
It was all new since I knew nothing about diabetes. I had no understanding about what it really meant, so we both had to learn a lot. We all had to learn a lot. It was overwhelming. You were young. It was definitely a life-changing experience. Learning how to do the routine. We liked your doctor a lot, so that was good. He was very patient and understanding. It was really good to have a good doctor. We had support mainly from your medical team, because we didn’t have family around. We were on our own a lot.
For other newly diagnosed parents, what advice do you have for dealing with the diagnosis?
The main thing is talk to the doctors as much as possible. People you can trust. You’ll get a lot of people saying things that they don’t understand. You can get bothered or hurt by it. People will say things without intending to and it can be difficult. You kind of have to just go with it. YOu don’t want to take it personally, you don’t want to personalize anything anyone else says.
Being involved with the diabetes community is a good thing. It keeps you in touch with other people. We did the WAlks which were very ehlpful. Just to have that sort of support. I liked that you went to the camps. You were around kidsso that helped normalize it a bit. At school you were usually the only so that was more difficult. You have to be an advocate obviously at school because they won’t know what it is. YOu want to keep it as normal as possible.
How did you make it normal?
You have to be prepared, but not make a huge thing out of it. I see some parents like to dramatize everything, but we just incorporated it as part of our daily life rather than focusing on it as the central part. I think it helped you.
Is there anything that you did that now reflecting back that you’re either glad that you did it or that you wish you had taken a different strategy?
There’s nothing I would change. You were always responsible, so that was good. As far as checking blood sugars and perhaps we gave you too much responsibility. I thought we were pretty good about watching, but maybe you feel like you were on your own too soon. Like anything, you release the responsibility as you see it’s appropriate.
Do you feel like you guys went through diabetes burnout and if so, how did you deal with it?
It’s not burn out in the same way but there’s a time when you wish you didn’t have to do it. There’s no vacation from it. Every time you put together a lunch or you can’t do the same things. you have to be more cognizant and aware. I can remember packing your lunch in the early days and just being immobilized. Is five chips too many? Just counting things out was like a life or death situation. The responsibility was at times overwhelming. You had to eat, you couldn’t eat. It revolved a lot around food. Too much around food and that was not ever natural. You have to watch for your highs, you have to watch for your lows. Worrying about if you’re high. Exercise could make you go high. Emotions could make you go high. All the changes through growth were the hardest when you were a kid. They kept saying it would be better when you an adult because you’ll be more stable.
I knew it was “not really” but better than when you are growing and changing.
You still have hormones in the morning.
Yeah, you still have all the hormones and it’s all still reactive. But they just said it would be easier. I know I went on some of your field trips. Outdoor School was nerve-wracking because we had to sit down with the teachers and the nurse and have that all plotted out. That’s always difficult for parents, but even more so when the kid is diabetic.
I always said that people with diabetes can do anything anyone else does that they want to do as long as they are prepared and I think that’s how you raised me to think that. You guys never said that you can’t do that.
We never considered it a limiting factor. Ever. It just wasn’t. And we still don’t. Obviously you have to care for it and do the right things.
A lot of parents talk about how emotional they get about blood sugars and A1Cs, so do you feel like you could stay more objective or how did you deal with it?
You always kind of connect higher blood sugars with “you did something wrong.” But I don’t remember being affected too negatively. The A1C was always good when it came down, but that’s what you get burned out on, is the numbers. You do your best, why is it up higher when other times it’s not? It’s very reactive to exercise and food. And you know it’s hard to explain it to people. But I don’t think it affected my self-esteem.
Why do you think that is?
I saw it as information. We usually just tried to figure out what it was. We did have to do a lot of reflection on what may have made you go high, like long-term pasta. We started to learn about the different foods and the compositions of the foods and how your body responded. It was always an analytical way of looking at it rather than a personal “bad or good.” We didn’t take responsibility for how your body responded to things. That’s not good. We tried to do really good. Sometimes you didn’t always want to do, not that you really had any problems like some people. But you’ve always had a propensity for liking foods so that was an issue at times. There was some tension on that front.
One of the things I think is what part is the diabetes and what is just natural. Like, is the diabetes causing the behavior or is it just the behavior? When you have a kid with diabetes, you have to wonder is it the diabetes or is it just the kid, the hormones, the this, that that? I remember one time the doctor said that in puberty you won’t know if it’s the diabetes, the hormones, the social issues of kids that age. Diabetes was a big question mark. Is the blood sugar causing the unhappiness or is it the hormones?
We knew when you were high. You were significantly a different person. I don’t know if that’s still the case.
I think I’m more aware of the sensation of high and when my attitude is being blood sugar influenced.
That’s a good way of putting it. You were more influenced by your highs than your lows. So is she high or is it because you were with friends and they were all being snitty with each other. That’s normal. But when you have a kid with diabetes, it adds an extra point of reference to behavior that can be difficult.
What advice do you have for parents of kids who are going off to college? Did you struggle with not having as much control or knowing what was going on?
It’s like any other part of letting your kids go. By the time they move away, you better hope that you feel pretty good about where they are and you can just let them go. If you’re going to be so worried, you didn’t do the job early enough. It’s too late. If you don’t set them up and try to influence and raise them to be fairly capable people before they head off, then you are going to worry. But if you’ve done it pretty well, they should be able to manage. Of course, a lot has to do with the kid. Some kids are more independent. You were very independent. There’s not a particular age to start, but it is something that has to be done. I think the earlier you start with small steps, little things.
I do know every family is different in how they perceive it. A lot of it has to do with perception. My best suggestion is that they embrace it as their reality and not fight it. Don’t make a big deal about it. It’s not easy, but it starts with attitude.