Wednesday, October 22, 2008

589 days!

1 year, 7 months, and 9 days

That's how long Emma's been diagnosed with Type 1 diabetes. She's had it longer, obviously, during the time she suffered with it before it was diagnosed.

On many days, her diabetes just blends into our life seamlessly and its no more burden than reminding the kids to put on their shoes, brush their teeth, etc.

Other days, the burden is much heavier.

We have been fighting crazy numbers for quite a few weeks now. Lots of high highs and low lows. Its frustrating for us, and I know doesn't feel good for her. As a result, we've been testing a lot more than normal, so its now a more prominent part of our lives (especially in the middle of the night)

And the impacts it has had on our lives feel more, well, impactful right now. Emma was at a babysitter yesterday while Michael had a baseball game (we didn't want to subject her to the cold for those long hours in the evening). The babysitter had graciously agreed to check Emma's sugar levels. But she called at the first scheduled time to say she was having trouble. So there I was trying to keep the scorebook for the baseball game and troubleshoot what might be going wrong over the phone. I finally told her to just take a break and try at the next hour. It worked fine then.

Today, Emma was dropped off from preschool and the other mom casually said "Emma didn't eat all of her cookies". It had been about an hour since they had had lunch at school. I checked her sugar and she was ALREADY low (and had a lot of insulin still working). I had to give her juice and milk to compensate for the fact that she had been dosed for 16 carbs that she didn't eat.

Trying to balance keeping her safe and healthy with how involved her other caretakers are is tough. Her preschool teacher is the only adult in her little "in home" preschool. She checked Emma's levels before snack and lunch and then doses her. It's confusing enough for her to do this with 7 other kids, so I've tried not to ask her to check BEFORE lunch but dose AFTER lunch to make sure she ate it all. I want diabetes to integrate seamlessly into her school as well.

Some days are just harder than others. This is one of those days. I've lost the ability to look at my child and just smile at her sweetness (she is pretty sweet). Unfortunately, that thought is immediately followed by "I wonder what her reading is right now". It just stinks. It makes us tired.

I hope for the day that they develop a cure for Type 1 diabetes. I'll be first in line (and I know I'll be fighting with a lot of other mothers for that first spot in line). We've always heard its "within the next 20 years" but is it really. No one knows. And as the treatments have become so much better than they were 10, 15, or 20 years ago, it makes many believe that research time and dollars could be spent on diseases that are "more deserving" - I mean, our kids get along, just fine right?

Tomorrow will be 590 days. I look forward to the day I stop counting.

1 comment:

CloverGirl said...

Your post brought tears to my eyes. I sincerely hope that you can stop counting VERY soon.