Blogging from A-Z – ‘juvenile’ (type 1) diabetes

Today’s post is brought to you by the letter “J.” (I’m blogging the alphabet in April. Read the details at Suzy & Spice here or the Blogging from A-Z page here.)

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MaddyQuoteI can’t even come close to imagining what it’s like to be the parent of a child with diabetes.

Not by a long shot.

I remember when my cousin David’s daughter, Madisen, was diagnosed in October 2007. She was only 6.

David and Kelly freaked out for a minute, I think (wouldn’t you?), and then they got busy. They bought plane tickets to Oklahoma, where another cousin lives. Our cousin D.P. also has a daughter, Kara, with Type 1 diabetes (aka T1D), and David needed advice. He needed to hear from another dad that everything was going to be OK.

And it was, but it took a while to feel that.

He and Kelly were reeling with the new reality that their little girl had a problem they couldn’t fix. Even worse, it was a condition Maddy likely would be dealing with for the rest of her life.

Or at least until we find a cure.

Because “OK” doesn’t mean it’s gone; it means you find a “new normal” and you go with it. Whatever it takes.

You get educated. You seek advice. You get support from other parents. You use every resource you can find to help you – and your child – deal with it.

You fundraise, you walk, you advocate. You protect your baby girl as best you can.

KellyMaddyDave
Kelly, Maddy and David raising money for the Juvenile Diabetes Research Foundation in 2011.

This is their reality, according to Kelly:

“She will never outgrow it, and every decision we make regarding her care today has lasting implications for her health many years to come.”

Talk about a heavy burden for a parent.

But Madisen also knows how serious this is.

“Dealing with Type 1 Diabetes is a constant balancing act. Sometimes I WIN and my blood sugars are good, and other times I don’t, despite all the hard work. There are no guarantees. Every day is a battle with this disease that I can treat but never control. I have always said this disease will NOT STOP ME from doing the things I love ❤.”

This girl is strong. (I suppose she has no choice.)

She doesn’t let T1D stop her from doing the things she loves. She shows her grit and strength by playing centerfield on a championship softball team:

“I love to play softball and currently play on the varsity team at school as well as on a travel team. My diabetes has sometimes interfered with softball. If my blood sugar is too high or too low the coach may make me sit the bench until my blood sugar is in a good range. This makes me so MAD! It is like I am being punished or something. It is frustrating because I cannot always know when my blood sugar is going to rise or drop. It is not like I can plan ahead!!”

Kelly considers her daughter a hero:

“This is an emotional and physical roller coaster of which we never get off! Madisen wakes up every morning to finger pokes, insulin injections, highs/lows and everything in between. Diabetes goes to school with her, where she must learn and grow as a student all while dealing with blood sugar. She has managed to maintain a 4.0 GPA all through school despite diabetes. She goes to bed each night with the fear of dangerous highs that wreak havoc on her body or even more dangerous lows that could send her into a coma or even death. We turn around and do it all over again the next day and the day after that. Sometimes we all wish we could get off this ride or simply take a break. We have learned that with diabetes there is no break!

I took this photo the day I met Maddy in 2006.
I took this photo the day I met Maddy in 2006.

Most of what I know about Maddy has been from a distance of about 2,000 miles; I’ve enjoyed her company a handful of times during all-too-brief family visits. But I follow her parents on Facebook and have seen countless photos and reports of her as she has grown from a grinning little girl (with a melt-your-heart smile) to a beautiful and generous young lady.

“She has a kind heart and wants to help other kids dealing with this disease,” says her mom.

In Maddy’s words:

“I have had the opportunity to attend an amazing diabetes camp through the Diabetes Youth Families called Bearskin Meadow, where I can be around people who face the same struggles I do. I have had the chance to meet people from all different cities. I will be attending teen camp this summer for 10 days. I hope to become a camp counselor when I am 18. I would like to pass on the important life lessons that I have learned and make a difference to young kids who battle this disease.

Maddy may not know it, but she’s a role model and she makes her family proud.

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SOME THINGS WE WANT YOU TO KNOW:

A group of T1D parents welcomed me recently when David invited me to a Facebook group that he and Kelly are a part of. It’s a place where parents can get information and support from one another, and even share their frustrations sometimes. The first question I asked was, “Do you call it juvenile diabetes, type 1, or what?” Then I asked what else they would like folks to know about T1D.

  • “I hate referring to it as ‘juvenile diabetes’ because everyone familiar with it ALWAYS assumes once my son is not a juvenile, he will outgrow diabetes.”
  • “There is a whole movement out there to rename type 1 since all the press and public health messaging is around type 2, but tends to be referred to as ‘diabetes’ so type 1 folks are sometimes treated like ‘well if you just behaved differently you’d get over it.’ It’s an easy correction, but unfair for a kid to have to do it.”
  • Finding the right doc can be a challenge: You have to have a Pediatric Endocrinologist Specialist in addition to their regular Pediatrician to treat their T1D. Most regular Endo Docs will NOT treat kids under the age of 18 with T1D because it is much more complicated (due to kids’ constant hormone changing as they grow, the need for 24 hour on call – usually in close connection with a hospital, and growth factors, etc. complicate the regulation of the A1C).”
  • “Life insurance is near impossible for our kids that have gotten onset as a juvenile … that [our daughter] could afford. … It doesn’t seem the insurance industry is catching up to the medical progress that is being made for T1D and still penalizing all T1D.”

FOR MORE INFORMATION:

  • Diabetes Youth Families. DYF’s mission: “To improve the quality of life for children, teens and families affected by diabetes. The organization provides education and recreation within a supportive community, encouraging personal growth, knowledge and independence.”
  • Bearskin Meadow Camp.
  • Juvenile Diabetes Research Foundation. On a mission to find a cure, JDRF is “the leading global organization funding type 1 diabetes (T1D) research. JDRF’s goal is to progressively remove the impact of T1D from people’s lives until we achieve a world without T1D.”
  • National Diabetes Information Clearinghouse. The NDIC is a service of the National Institute of Diabetes and Digestive and Kidney Diseases, which is part of the National Institutes of Health. The clearinghouse “provides information about diabetes to people with diabetes and to their families, health care professionals and the public. The NDIC answers inquiries, develops and distributes publications and works closely with professional and patient organizations and government agencies to coordinate resources about diabetes.”

Until there’s a cure, young ladies like Maddy and Kara will keep fighting.

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Monday: K is for (stay tuned).

Follow me on Twitter: @OakleySuzyT

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