Wednesday, October 27, 2010

Until A Cure, We Camp

I know a little something about Living With Diabetes.

Twenty-six years after my diagnosis, I'd certainly hope that's the case. Particularly since it came at the age of 5 and I don't remember much about life before that.

But even with all of those years, I've got nothing on what it's like to be the parent of a Child With Diabetes. No frame of reference for what it's like trying to function as my child's pancreas and keep them safe in order to not only get through childhood, but to grow up to have a long, productive, successful life.

This past weekend's first-ever DYFI Teen D-Camp Weekend gave me the chance to see some of that first-hand, to get a glimpse at what these incredible superheros will do for their CWD. They'll do anything to help their children Live With Diabetes. Even if that means stepping aside and letting them talk about important, life-shaping experiences with others just like them.

You read the story last week about how this came to be - a D-Mom's vision.

Well, at D-Camp she shared a story that surprised, amazed, inspired, and touched my soul. Some of us were talking about Lows and how we feel and deal. Myself and a few of the other Adult Type 1s who are college-age, and this D-Mom who doesn't have firsthand knowledge except through her teenage son. She shared some of her observations about her son's symptoms, and mentioned that she had no clue what it was like to feel this way. To try and better understand, she even tried giving herself insulin one time to drop Low.

Mom: "I waited and it didn't work, and I felt like I couldn't even do that right. I felt like such a complete failure."

But then, she got behind the wheel and suddenly, when sitting there in the car, she suddenly got a rush and felt the blanket of sweat sweep over her. That sense we all knew was a Low. But unilike us, within minutes and without needing to eat anything, her body kicked in and raised her BGs up to safer levels. Still, she had the experience.

If even for just a brief moment or two, she knew what it was like.

I'd never heard a story like this, and it amazed me.

That was on Saturday. On the next day as the camping weekend came to a close, I had the privilege of being in on a conversation between that D-Mom and two D-Dads talking about why the DYFI does what it does and how that's so incredibly important to these families.

Paraphrasing based on memory, the D-Dads said something like this:

D-Dad: "You know, we all want a cure. I hope so much that the Roches and Lillys and JDRFs out there find a cure. I really do. But they aren't one-on-one with the families like we are. Until there's a cure, we're here for what they really need every day. We help them live with diabetes, until there's a cure."

Other D-Dad: "To know that there's others like them, and there's a place like this where they can talk about these issues they're going through. We don't know what it's like, and no matter how hard we try it just isn't the same as what they're getting through these camps."

The words of an awesome Kenny Wayne Shepard song came to mind at that point, and I even keyed it up on the iPod later at home that evening as those weekend conversations resonated even more. The song is Live On, and  a key part fits right with the theme these parents expressed:

"If I could find a way
I'd take your place.
But you've got to just live on.
Live on."

Live On, indeed.

In talking with some of these D-Parents that weekend, I told some stories of my now quarter-century or so of living with diabetes and made sure to throw in that "I'm not a role model by any means, and am a sign of what not to do." The parents chimed in quickly, disagreeing. Saying that they thought I was in fact, someone their own kids of whatever age could look up to.

Uh, wow. That's kinda scary right there. Regardless of the exact path with various twists and turns that I've taken, those parents see this result - in all its glory - as something to emulate. Being 26 years in, without any noticeable or mentionable complications and being able to have a successful, productive, full life already with more to come. That's what they want most of all.

Those parents all just want their kids - they want US - to be able to Live On. These camp experiences they've helped establish do exactly that, in as much as meters help test blood and pumps deliver insulin. They are live-saving and informative and important and insightful. All wrapped up in a camping experience. Just like so many of us have found refuge and friends in the Diabetes Online Community.

We're all in this together - kids, teens, and adults. We all have to Live On With Diabetes, short of a cure, and until then, we'll camp in whatever we can as a community.

6 comments:

Meri said...

Thanks Michael! You brought some tears. We are all in this together! I am so thankful the PWD have embraced the Parents of PWD. Like the mother who took the insulin, (which was an extreamly loving thing to do and probably kinda dangerous,) I wish I could take it away. I wish I could totally understand. I wish I didn't have to say to the boys, "I have no idea how you are feeling." As a parent we want to understand fully. All we can do is band togther, and do our best to let our kids know, you can LIVE ON! You can LIVE! And also, just as importantly, make sure they know that they are not alone.

Reyna said...

Hey Mike...."DITTO" on what Meri said. I really appreciate the bonding between the PWDs and those of us parents with CWDs. You help me gain insight and knowledge. You've lived it. Your posts and comments in the DOC help me raise Joe to the best of my ability. I'll camp with you anytime buddy!

Briley said...

That is amazing. I've had diabetes for 21 years now (also not remembering life before), I've worked four sessions of family camp during the summers of 2008 & 2009, and one set of parents stood out to me. This mother & father said "What can we do so that she is like you?" Uh, wow. Talk about on the spot pressure and I had to go back to all those years ago and what my parents did for me. It was tough though, because my life didn't revolve around diabetes. It was there, every single day, we all know that it was, but the things I remember about my childhood weren't the things of diabetes. And there was definitely the Halloween hints (sell your candy) and the support groups, and the teaching the friends and cousins about it, and of course camp. I know that I've certainly felt frustrations when my mother has said "I know what you're going through" because she doesn't technically, but then I think about my best friend whose mother was just diagnosed with T1 diabetes, and would I ever wish that on my own mother? No way (when I was little I certainly did). Until there is a cure, our biggest support group will be the parents of people with diabetes, and we must never forget it. Thank you for opening our eyes to the views of other parents.

Doris said...

Very well stated Michael. I'm not only a Type 1 diabetic but also is my daughter. She's 21 now but she took Type 1 at 11. My mom learned me well (BLESS HER SOUL) and when my daughter was diagnosed with Type 1 she came back in to help her learn things too. It was a heartache to me to think I had caused her to have it too. Oneday here resently she looked at me and said I quote, "It WASN'T Your fault I took diabetes" No sweeter words to a Type1 mom's ears!

Lorraine of "This is Caleb..." said...

"Until a cure, there's camp". I agree. Camp and other get togethers and meetups are so important now to keep proper emotional health.

Thank you for being so involved for the benefit of others.

Melinda said...

Camp was the best for me. I got diagnosed in 1960. At age 5. In 1962 my parents shipped me off to Camp NYDA(New York Diabetes Association). In hindsight was one of the best things that ever happened....