Tag Archives: parents

July #DSMA Blog Carnival: What would YOU change about diabetes?

The July blog carnival topic is a simple, yet interesting one. I could take this in many directions:

We usually talk about how we deal with different aspects of diabetes, or things that would help us deal with those aspects. This month let’s change things up a bit. We’re going to revisit a question from the Open Chat on June 18th and come up with something about diabetes to change. That’s right, we want to know . . . .

If you could change one thing about diabetes, (besides not having it), what would you change? Why?
I’m going to answer this a little differently from what you might expect. What would I change?

I would make it so no child would ever be diagnosed with diabetes.

I don’t have any kids, but I always wanted one or two of my own. I know many D-parents will scoff at this, but I honestly don’t know how I would deal with a child’s diagnosis. I know, ultimately, you do what you have to do for your children. That’s the way it should be. But man… even today, I just ache every time I read about another kid added to our little club. No child should ever have to face my kind of life so early on in their own development.

And what about the parents? I’m really just guessing here, but I’ll bet that something like a child’s diabetes affects the parents way more than they ever let on. Sending their child off to school or camp without knowing how their day will turn out. Communicating with the insurance company to get durable medical or prescriptions straightened out. Setting the alarm for the middle of the night so they can get up and check their kid (or kids), every single night for as many nights, weeks, months, and years as it takes. No parent should ever have to face this kind of burden.

And these are the problems of someone who has access to care and insulin and the latest medical devices, which, as we know, isn’t always the case.

I was lucky enough to be diagnosed Type 1 as an adult. By the time I was diagnosed, I had my own job and my own insurance. I had lots to learn and a lot of work to do, but at least I had a bit of a head start compared to the children who live with diabetes. Kids and Parents are blind-sided by this kind of news– at a time when a child is growing, learning, experiencing all the joys of life, they now have to add fingersticks and carb counting and bolus calculations and infusion set changes. There is nothing that’s right or fair about that.

So if I could, if I couldn’t eradicate it entirely, I would make it so parents would never have to hear that their child has been diagnosed with diabetes.

Unfortunately, I can’t do that. But… Do you know what I can do? I can help educate people. I can speak out for better healthcare and greater access to care. I can promote greater understanding. I can participate in walks and rides and other events that help raise money to fund bigger research, better tools, and hopefully, a cure. I can write my elected officials. I can support the amazing D-parents who are courageously telling their story. If I can’t remove diabetes from my vocabulary entirely, I can at least work toward making life a lot better for the kids.

Even though it might cause an issue with the naming of certain conferences around the country, my wish is for no more children with diabetes. If I ever had a child of my own, I’d want that to be what I’d change. I’d want that to be my legacy.
This post is my July entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2014/05/may-dsma-blog-carnival-4/

Real Life Get-togethers. Not just for T1Ds anymore.

The Great Spousal Unit and I attended an open house for Type 1s at the local JDRF headquarters this week. It’s important for me to go to these things, in part because I’ve been feeling very anti-real-life meeting lately, if that makes any sense. There’s not a good reason for that. It’s just that mostly, at the gatherings I’ve been attending, I’m the oldest person in the room. Sometimes by a lot. And as you probably know, sometimes, if people can’t immediately identify with you, they don’t want to talk to you.

So I dragged the spouse to this get-together. She wasn’t feeling too good that day, but I figured if I could get her to come, I’d have at least one person to talk to all night.

You know what? We both had a great time. We didn’t get to talk to a lot of people, but the conversations we had were meaningful. I saw someone I recognized from mentor training a few months back. We spoke to a mom whose kid was diagnosed not too long ago.

That last conversation was particularly poignant for TGSU. She got to hear, maybe for the first time, someone talking about nighttime BG checks, packing diabetes supplies as well as books and pencils for school, and managing pump settings for an active summer instead of desk-bound school days.

On our way out, we passed by her child and a couple of other kids that were there, who were drawing designs on balloons (and using the name tags from the event to write “Free Balloon” on each one—wish I had gotten a photo of that) and handing them to people as they left.

On the way home, Maureen was feeling a lot better. And she admitted to a new understanding (and perhaps empathy?) for parents of CWD (Children With Diabetes) and their never-ending labor of love for their children. All I could think of was how great it is that that kid seems to be living the kind of life they’re meant to live, even with diabetes along for the ride.

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