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, 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.