He didn’t really control the way he was eating to begin with. He just ate what he was given. As he got a little bit older, he would sneak stuff. You know, he would find candy, anywhere and eat it. And he would just go into the cabinet and eat things constantly when I wasn’t around. But when he was little, it was easier to control because it was easier to decide what he was going to eat and that was it.
It’s a little daunting sometimes
It is overwhelming. Especially if you go to a big city and you’re not from a big city, but I don’t really associate that with diabetes per se. If you’re not in a medical environment all the time, it’s a little daunting sometimes. The terminology and things like where do you park? And you don’t understand what all the people who work in a big place do and why there are so many things going on. I imagine that if you’re a child, it must be completely overwhelming. I mean, we see the kids in the halls of the Children’s Hospital and some of them don’t look too happy or very glad to be here, so you know, it’s kind of hard to see that.
It made incredible demands on me. They [my daughter’s family] live one street away. I see the grandchildren all the time. And when I was in the hospital, I went to the meetings and I tried to understand how the carbs and the insulin and the exercise and the growth spurts and the food interact. And I’ll tell you, it’s now many years later, I still cannot for the life of me figure out how much insulin Billy needs. I mean, I have a college education. I’m not good at math and I have adult attention deficit disorder. So that means I’m not terribly detail oriented or attentive a lot of the time, and I think those are two things that are required for people who deal with children with diabetes. It’s not so much of a problem now because Billy knows, but back in the early days when we were trying to help them, it was extremely, extremely difficult and had a certain number of very humbling and scary failures.
My lowest point
I decided about 2.5 weeks after he got out of the hospital to take the children to the science museum and it’s only an hour drive in. We’d stay there two hours, and then we’d come back. There was one time where he had to have a shot, so I had everything written out, but my car broke down on the way and we couldn’t get home because we had the dog in the car. And so I called the tow truck and the guy was arguing that he couldn’t drag the car with a dog in it. Billy started to cry and it was too soon for him to have to eat or to have to have a shot or anything. If his sister Abby, who is two years older than him, hadn’t been there and said, “Nana, he looks low,” it would not have occurred to me. I was so caught up in my car problem, I wasn’t thinking about Billy’s health.
Well, anyways he took his blood and he was way, way low, on the verge of passing out. I panicked. I had a glucagon shot with me, but I looked at it and I couldn’t remember how you put it together. And then Abby said, “Well, just give him some sugar.” So we finally got him back together and out of pity, the two truck drivers drove us home. I felt at that point, I’m dangerous to this child. I’m a threat. I could kill him. And I went to bed after I dropped them off and I was just horribly upset and thinking that I’m not fit to be a grandmother. Then afterwards, I thought “They need me. This is indulgent. This is dramatization. I will learn. I’ll just have to apply myself harder.” I think that was probably my lowest point.
Occasionally, you run into those people who just don’t know any better and say stupid things, but it’s not their fault; they just don’t know. We’ll hear a lot, “Oh, he’s not an overweight kid,” and we’re like, “It’s not Type II, it’s Type I. It has nothing to do with that.”
Broadening your child’s horizons
We live in a very rural area, so I see it as a way to broaden the kid’s horizons. Even if you don’t choose to live in a city, you’ve been there. You know how to get around. There’s also other resources; museums, stores, whatever that you can’t find in rural areas. So we’ve tried to make them more cosmopolitan, I guess.
It has improved our life
It’s really incredible. In some ways, diabetes, although I would never wish it upon anyone, has really improved our life and improved our family life because of the approach that we’ve taken to it.
A stricter schedule
We have more of a set schedule. Prior to the diagnosis, some nights we ate at 5 o’clock dinner or 5:30 or up to 6:00, 6:15 and now it’s more of a set schedule. So I notice that we are rushed more if we are at certain events. If we don’t bring the insulin we’ve got to come home by a certain time. But there have been positive traits as well. You know, we eat a lot healthier. All of us eat smaller portions; not the same as him, but smaller than we typically were in the past.