Wednesday, December 19, 2007

Focus

Last night I participated in a focus group discussion for parents of children with diabetes. I met three other moms of diabetic kids there. One had 3 kids, two of whom, both girls (14 and 10 yrs. old), had diabetes. She had been dealing with the disease for almost 10 years. Another mom had a preteen son that was diagnosed 2 years ago, and she started a nonprofit organization to raise money for the ADA. The third mom’s son was just diagnosed a couple of months ago; however, her son is not taking insulin at this point. He is on a very strict diet. That didn’t sound like type 1 to me, but the term pre-diabetic was tossed around, so it could be that he will be starting on insulin soon.

We were all from different areas around town, had different backgrounds, and had differing stories of our intro to diabetes. And you know what? We could have talked all night. Diabetes is an instant ice breaker. I’ve always been the type of person who, when going into a room full of people I didn’t know, would not be very comfortable. But put me in a room with other moms of diabetics, and it’s hard to shut me up.

We all signed a form saying that we wouldn’t discuss what we talked about in the focus group. I did tell Daniel this morning, however, that afterwards the moms talked about how hard it can be to get their teenage kids to focus in on their diabetes care. Daniel surprised me by saying that his celiac bugs him more than the diabetes. He wishes he could just eat the things that he likes. But the diabetes is just, well, there. He manages it. It doesn’t really affect him. (This after he had the nasty grumpies because he was low this morning).

I said, “It doesn’t affect you? What about the high & low swings & your mood? What about the fact that there’s no cure for this disease (yet). What about dealing with the long term effects of diabetes?”

Daniel says that he’s doing everything he has to do to keep his blood sugar under control, which will allow him to stay healthy. Diabetes is really more annoying than anything else.

So I’m feeling a little crazy mixed up inside today. On the one hand, I want Daniel to be deadly serious about diabetes. Yes, he is doing everything he remembers to do so he can maintain good blood sugar levels, but honestly, if I didn’t remind him to test two hours after meals, or regularly on weekends, he would forget. He would miss his highs, which he doesn’t feel, and eventually they would affect him. I want him to consider D to be more than just an annoyance.

Yet I want Daniel to just be a kid. Not to be defined by diabetes. Not to have this constant timer & carb counter clicking in his head.

In the meantime, I guess he will be a little bit serious and a little bit annoyed. He is mostly in charge of his care, but I do all the meal planning & medicine ordering. I talk to the insurance company and discuss Daniel’s future with the endocrinologist. At some point Daniel will take over more and more from me, and as an adult will be fully in charge of his care.

Adult shoulders are built to carry more cares than teen shoulders. For now and the next however many years I will help Daniel as best I can with reminders, meals, carb counting, etc. etc. etc. When his shoulders are large enough and his spirit is willing, I’ll transfer what needs to be transferred. But not everything. Moms have the right to carry cares for their children no matter how old they get.

4 comments:

Jillian said...

Don't worry about Daniel's attitude towards diabetes. It sounds to me like he is well adjusted and in a good place. At his age and with being newly diagnosed his opinion could be extremely different. Diabetes doesn't really bother me much either, it's only when it prohibits me from doing something that I get upset. Lows go away, highs come down, site changes take minutes, blood sugar checks seconds. It's a big disease that sometimes has the ability to get in the way. But it will never be the only part of my life, nor will it be Daniel's. I feel like diabetes is just something I do, like going to school. I may not always like it, but I need to do it.

Now that I've rambled on and on...I want to say that I am sure with as wonderful a mother as you Daniel will be just fine when this is all his to deal with. If there is one thing I could wish for all mom's of D kids, it would be to have faith in what you have taught us and to know that we will be okay.

Naomi said...

Jillian, I totally love getting your perspective because it really helps me get my head on straight. It's hard to figure things out sometimes when it's your own kid that your are dealing with!

My sister in law also had another perspective that helped me a lot -- that the diabetes may be less of a problem for him than the celiac because the diabetes adds on to what he has to do in life while the celiac takes something away from him. That made sense to me, too.

And the way you put it -- that it's something you do, like going to school -- that's the way it should be. It certainly doesn't stop you (or Daniel) from being the wonderful, vibrant people that you are.

But it did allow us to make this connection on line and be OC friends! Yay!

in search of balance said...

I can see how the Celiac would be harder. It's more in your face, more limiting, in a more pervasive way than diabetes. I think diabetes is quite worse, really, but the truth is that diabetes doesn't prevent him from having snacks with his friends, or being normal during the social staple of dinners out. All of that could be handled with a shot if it were just diabetes, but there's no way to handle it with celiac and still be able to participate freely.

I also think that, in a way, it's hard for diabetics to really see their diabetes. People always tell me they couldn't do what I do, or I must be so strong / brave / dedicated, but what they don't understand is that there is no other option. None of us are any braver than a normal person, we just all would rather stay alive. And there's a certain amount of blind acceptance that comes with that desire, which mutes diabetes a little bit. When we're truly given no choice, it's hard to ponder or even acknowledge what having a choice would be like.

Daniel's doing great. So are you. When the handing over of control comes, I know you'll both be ready. :)

jules said...

to me i think it sounds like daniel has a firm grasp on it, i feel that life is too short to take so seriously even if we do have a serious chronic condition. the more we stress about things we cannot change the more difficult they become. daniel sounds like a great kid and you sound doing an amazing mom :)
it still sometimes takes me awhile to realize i'm grumpy because i'm high... but even if i'm just grumpy to be grumpy i like to say it's the diabetes... somethings gotta take the blame! haha