As a parent, it's hard for me to picture the day when Leah will be managing this disease on her own. We teach her things all the time, and she's more active in her own care every day. But she obviously can not make judgement calls and interpret blood glucose numbers in relationship to her care. So meeting adults that are overcoming the many obstacles of diabetes every day always gives me perspective. Although I'm not sure how I'll ever "let go," this will be her disease one day, and she'll be okay. While at a wedding reception this weekend, I had the unexpected opportunity of speaking with a woman who's lived with type 1 diabetes for
over 40 years. She was incredibly candid and encouraging, and it was a moment I was really thankful for.
This woman was 13 when diagnosed, and she took on much of her own care immediately. It was the days of NPH, with very limited ways to test blood sugar. She still actually uses NPH, in conjunction with Humalog. After 45 years, she has no major complications thus far, (at her most recent doctor's visit they just began to suspect neuropathy) so her doctors can't argue with what she's doing. Although she tried a pump at one point, it was just easier for her to stick with the methods she learned with, and I totally respect that. She was very interested in finding out more about the technology we use--the capabilities the pump now has versus what she had tried years ago, and what kind of information the CGM gives us.
She said quite a few things that really stuck with me. The first was that in her experience she really learned how to take care of herself through food. She was obviously on an eating regimen based upon the peaks of NPH. She stressed that this taught her WHAT to eat and WHEN by listening to her body. Now, with technology, she feels people sometimes do the opposite of that. For instance, the mentality that with fast acting insulin you just keep eating and keep bolusing, which often backfires because the insulin isn't truly "fast" enough, and foods just keep elevating blood sugar while you're waiting for it to kick in. While the pump and fast acting insulin give you the freedom to eat on demand, I can think of plenty of situations where this is true. She agreed wholeheartedly that children today are much better off than at the time of her diagnosis, but I think she makes a good point.
We touched on a lot of random daily care issues--like the fact that stress can send her blood sugar up to 400 in a matter of minutes. That illness lingers in her body more than anyone she knows. (both of which we see in Leah all the time). What highs and lows feel like, physically, because it's so hard to understand that as a non-diabetic person. How mentally challenging the disease is as well, and that she makes a choice each day to leave the previous day behind and just start over with that first blood sugar number. And when I said "So it's okay that I don't get things 100% right?" she assured me I'd never get it right, and letting go of that notion is the best thing I can do. She also admitted that while she feels she's really learned how to best take care of her body, the fact that she has no complications could be a result of that, or be genetic, or just dumb luck.
We spoke about how hard each day can be, because you don't know what unexpected challenges diabetes will give you. We agreed that life does not stop with a diagnosis, and that Leah will be anything she wants to be. However, diabetes is ALWAYS there, and the analogy she used was this: "Imagine you were with a group of people that were told to jump into a body of water, and just start swimming. But when you jumped in, you were the only one who had one hand tied behind your back."
In other words, it's a tremendous challenge. You might be with the group, but you've got something just enough in your way that you have to work that much harder, and be that much stronger to do the job. It won't stop you, but it can hang you up for awhile. And so often, no one ever sees that hard work, only you and a few very close to you. I've been thinking about that a lot the last few days, and I see that analogy in Leah's life. The many trips to the office throughout her school day. The waiting to go and play with her friends until her blood sugar comes up. The piano lesson with high blood sugar that makes it impossible to concentrate. The daily pokes and prods. Just "stuff" that gets in the way, even if it doesn't stop you from doing what the other kids are doing.
As I've thought about our conversation the last few days, I'm just really grateful she was so open and willing to share her experiences. It's impossible to know what the future holds for any of us, but at least I know each day we try our hardest. I just keep thinking of Leah, as an adult one day and being happy and healthy no matter what. That's all any of us ever want for our kids, whether their living with diabetes or not.