Thursday, September 29, 2011

It's a Marathon, not a Sprint

The Chicago Marathon is 10 days away. My first 26.2 miles, and I seriously can't wait to get it over with.

Each training run this week gets me one step closer, and I decided last night at 10:30pm to go outside and get my 5 mile run over with. What's the difference between that time of night and 5am, right?

But before I could go outside I heard Leah's pump beeping low...85....not too bad, and we haven't really had unexpected lows popping up at night lately, so after giving her half a juice box I ventured out for my run.

It was a beautiful night. There seemed to be a million stars in the sky, the air was cool and crisp, and the darkness is always sort of comforting to me while I'm running. It was a nice chance to get out and clear my head after a long day, and I knew when I was finished I could just go home, go to bed, and sleep a little longer in the morning.

Wrong. As soon as I walked in, I heard the pump again. (My sleeping husband hadn't heard it yet). 65 this time. Another juice box. I stayed up awhile to keep an eye on things.

1:00 a.m. rolls around and she's low again. Another juice box. Suspended the pump so she wasn't getting any insulin. Tried to get to sleep, which of course is next to impossible when your child is in the next room teetering on the verge of dangerously low blood sugars.

I've often thought about the similarities between long distance running and diabetes. They are both physically demanding and take a tremendous positive mental attitude to get through. But the running is just plain easy compared to the day to day crap that diabetes dishes out. On marathon day, my body will hurt at the 20 mile marker, I'll somehow make myself keep running through the pain, and then it will be over.

Diabetes will not go away. Leah will need to endure for years and years to come. She'll need an attitude that keeps her going, even when her body is beat up from injections and site changes, and her mind just tells her to quit. Her 26.2 miles is the course of her life with type 1 diabetes, and it's definitely a marathon, not a sprint.

Leah and her brother at a Kids Fun Run this summer.

Wednesday, September 21, 2011

Site Night

It was site change night at our house, and it always amazes me how much stuff there is that goes into it. Insulin, tubing, reservoirs, needles...lots and lots of parts and waste.


But the thing that always really amazes  me is Leah's composure....just sucking in her breath, waiting for the needle to go in, and letting out a big exhale when it's over. 

Tonight she was describing how it didn't hurt too bad, and that it seems to have gotten better over time. She said "That's how it works I guess, that it just keeps getting less painful, so maybe when I'm older they'll invent something that doesn't hurt as much at all." 

Then she paused and said, "Well, actually, I hope I don't have to do this for the rest of my life.  Maybe I won't have diabetes forever if there's a cure."

Hope is a powerful thing. I hope she's right!!

Monday, September 19, 2011

Really??


So the "physical education" newsletter came home a few days ago. 

I appreciate the fact that schools are trying to educate our kids about a healthy lifestyle. I can even look past the irony that while sending home information about "trans fats" and "obesity," they are still serving fried corn dogs in the cafeteria most days.

But by putting DIABETES into the same category as OBESITY and TRANS FATS (with no further explanation), it's pretty much going to send out a message that diabetes just means BAD.

The kids this went home to are in second grade. There are 3 kids with Type 1 diabetes in Leah's school, and I'm pretty sure most kids (and parents) don't know much about diabetes except that they might have a friend who "has it" and goes to the office to prick their finger every once in awhile. They already have enough kids telling them "You can't eat that!" and "You ate too much sugar and now you're diabetic?", that I really don't think we need to add fuel to the fire. 

I brought these things to the teacher's attention, and after a few emails from myself and another parent, they clearly seemed more interested in defending themselves than in seeing our point. Educating people on diabetes gets tiresome, especially when they prefer not to listen.



Friday, September 9, 2011

Everyone's "Fine"

First of all, thank you to Leighann at D-mom blog for highlighting Miles of Hope in her Grassroots Fundraising series today!! We've almost doubled our online donations in a week, and our registration continues to grow.

On a related note, I saw a quote by Dr. Faustman today that said when it comes to diabetes she still hears people say "I know someone with type 1 diabetes, and they're fine," and that it's important to educate and clear up misconceptions about this disease.

As parents we hear this all the time. We're told by people that we're lucky it's not something worse. That they know someone who "got diabetes as a kid and now they're grown up and fine."

But it's not fine. 10 fingers pricks a day is not fine. Multiple injections a day is not fine. Being hooked up to multiple devices each day is not fine. And that's just the physical stuff.

What about the anxiety at school Leah has if she's late to lunch after her check in the office. The sleepover she can't go to, or the interruptions at a birthday party or a playdate. The tears after someone notices she's "different" (in their eyes). The carb counting and limitations.

There's the never-ending fear of the unthinkable happening at night. Or the complications that can come as a result of living with this disease, even when you're working your butt off every day to try to get it right. None of it is fine.

Fundraising can be hard. It takes a lot of energy and time, and it's difficult to get the point across of what this disease really means for our kids. But it's worth it.

I will never be "fine" with diabetes. We know everyone has hardships in life and we count our blessings every day. But diabetes is awful, relentless, and it takes far too many lives. It needs to go away. And our kids deserve every penny we can raise, every amount of effort it takes to make that happen. Then things will be fine.

Thursday, September 1, 2011

Featured!!

Miles of Hope is taking off!! We've gotten a ton of business donations the last few weeks and are well on our way to having a great event.

Today, Angie and Trevor at marathontrainingacademy.com are sharing info about our event! I've been following their training plan for my first marathon in about 6 weeks (yikes!) and their information is invaluable for any runner, no matter what your goal is.

Leah's life is a huge motivation for my running, and her grin was ear to ear as she heard our story being shared on their podcast.

If you click on the link below, you can scroll down and see where they mention our event in the blog comments. Also, just click on "play" on the podcast button and you'll hear about us within the first few minutes.

http://marathontrainingacademy.com/answers-to-your-questions-about-marathon-training

Register for Miles of Hope by following this link. You can participate and donate in many ways, and help us get one step closer to imagining a life without type 1 diabetes.