We use the same parenting skills that we would have used whenever a kid doesn’t want to take their medicine or do something that they don’t want to do. I wouldn’t say it’s anything different.
This is just the way it is
We’re actually glad that he was diagnosed when he was two years old because at that point, there weren’t any bad habits to break. There wasn’t any explanation of why he couldn’t eat certain foods anymore. It was this is just the way it is, and you’re going to sit down and finish your meal because I’ve given you X amount of insulin, so you need to eat X amount of carbs.
I have my moments
I don’t know how I manage it, quite honestly. I have my moments. I break down. I run. Our nurse was just saying to me, “You’ve got to get out. You’ve got to do something” because I primarily do all the diabetes care. I think that falls on a lot of moms that they’re the primary diabetes managers. I don’t know how I deal with it. I go and I hang with my kids in the summer. We go swimming; we play at the beach. As much as I try to make him feel normal and not feel different when he’s with his friends, I try to do the same. I try to just be like this is just the way it is. It’s like putting your shoes on in the morning. It’s just something you’ve got to do. You can be upset about it, but on the other hand, you’ve just got to suck it up and deal, and this is life.
Hugs and encouragement
I think kids with diabetes, though, it kind of catches up to them and they feel overwhelmed sometimes. I think that’s another thing that you kind of have to watch out for as a parent. Sometimes they just need a hug or some encouragement. You just have to be alert for those times when kids are just feeling depressed or just really sick of it all. I’m not talking about a glucose crash. I’m talking about the emotions of it. You kind of keep an eye out for that.
I wish I never had this disease
Allie has always been good about saying, “I wish I never had this disease.” You know, “Why did you even bring me home from the hospital? You should have just left me there.” So, she gets kind of teary eyed and these things tumble out. You just have to again put the parent hat on and just rationalize it through with her. And sometimes you can’t talk her though it. You just have to let it subside. She’s had some spells like that.
Our daughter was old enough at diagnosis to have been a part of the entire process. When I find a great book about diabetes, I share it with her and we discuss it together. Her attitude has been wonderful from day one. She seems to understand that this is just how life is now, and that it doesn’t change who she is as a person or restrict her future in any way. She just has to take over for her pancreas.
He’s still too young to understand
He complains sometimes about his diabetes and I try to explain that some people have diabetes. He’s still too young to understand the whole like medical side, like exactly what it is. With the eating stuff that he’s not supposed to do, I try to explain the consequences, what can happen if he doesn’t, you know, eat the right foods. Like, that he could get sick and bad things could happen, but it’s still all above his head for now.
I don’t make it a big deal
I just try to make it not a big thing. Her diet shouldn’t be any different from anybody else’s because it’s just not eating junk all the time. It’s not good not only for her, but it’s not good for me or the other kids to be eating stuff like that all the time anyways. So it shouldn’t be a big difference.
I think the exercises that we did with Billy and the fact that I got out and moved a lot was very good for me as a stress release. And I think letting my parents take the kids so that my husband and I could have some time alone was really important because when we were all together we’d spend a lot of time talking about blood sugars, numbers and eating, and you have to kind of get away from it.
An honest account
I was so disjointed in the beginning so anxious, so tired. I was afraid that the kids would look back and not know what had happened to our family. So I started a journal with my mother to help the kids look back and understand what the whole first year was about. I wrote with her for two years and at the end we had 250 pages, so my mother being a writer had an agent already and the agent took the book and we edited it. We did it for the kids, but on the other hand if you look at what’s available in the book stores, I don’t think there’s an honest account or an in depth account of a family moving from the really hard part with enough help to show that it can get better, with some ideas of how you can make it better and how you can pull together as a family. I just felt sort of a moral responsibility after a while to get it out there to try and help other people who felt as lonely as I did because I was desperate for a book like this and there wasn’t anything.
I wish I could have seen what was coming
I wish I could have looked back and shown myself what it’s like now because I think it’s such an unknown that it’s a tremendous change. You just can’t underestimate what it’s like to have this earth shaking realignment of the world all of a sudden. And for me, I just didn’t know. I was so terrified to think five years from now, what is he going to look like? How sick is he going to be? Will my marriage make it through this? Will Abby get disenfranchised from the family and just be sick of our stress and be out as a teenager doing something crazy? So I really wish I could have seen what was coming, which is that we’re way better off.
New daily hassles
There are, of course, the regular doctor’s appointments and the daily hassles of blood sugar monitoring (sometimes in the middle of the night). There have also been occasional emergency runs to deliver diabetes supplies when our daughter has forgotten her “bag”. But on the whole, we have adjusted to having these things as part of our life and do not experience them as overwhelming or difficult to deal with.
Meeting other families
I went to some of the Juvenile Diabetes Research Foundation coffees and I was able to meet some other moms and ask some questions. So I thought that was helpful. I thought the VNA was very helpful in the beginning. The more honest I was with my friends about with what was happening, the better but I was afraid of complaining too much, so I didn’t use that as much as I could have.