The Amazing Benefits of Being a Diabetes Advocate

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About a year after my daughter was diagnosed with Type 1 diabetes, we became an uber diabetes advocate fundraising family.

And while we did so much – our local JDRF Gala, advocacy on Capitol Hill, fundraising and outreach for our diabetes camp, helping newly diagnosed families and more, it was the Walk to Cure Diabetes each year that was our flagship of advocacy.

I quite literally stumbled upon the walk (in our case the JDRF walk [or to be more exact, back then, the JDF Walk]) when I was at a Marshall’s department store shopping with both kids in tow.

“Would you like to give a dollar to help cure diabetes?” the cashier said, waving a colorful paper sneaker at me. Light bulb moment.

“Yes!” I said with probably more enthusiasm than that cashier expected. ‘Why yes I do!” I pulled out my dollar and with a flourish, signed our names to the sneaker, quite impressed with myself. But my older daughter, then 11, was not so overcome with amazement.

Mom,” she said, crossing her arms and glaring at me with a disappointment only adolescents gazing upon their lame parents truly feel “Don’t you think you should do more than that?

Light bulb moment number two. Because darn it, she was right. We grabbed a walk brochure, ran around our neighborhood, raised about $472 (okay – exactly that) and headed to the walk the next day.

A year later we were one of the top walk teams in our region, and we’d go on to be one of the top in the country. It was work, yes, building this team annually and motivating folks to raise funds. But I have to tell you: from my years and years of doing walks (and now rides), I’ve taken away more than I could every raise or give.

How so? It’s simple: being an active member of a group working toward change for people with diabetes is transformational, educational, empowering and just plain good for anyone – be you a person with diabetes, a D-parent, grandparent or just a caring friend. I look back now – some 16 years after that Marshall’s moment, and thank goodness that cashier did her job. Because I’ve gotten so much. Let me share just some of it. (And a quick note: While we chose JDRF, there are many other great walks out there as well. ADA and DRI, to name two.)

*I have friends who are on this journey too. I know, I know: you can click on Facebook and find friends like that in a millisecond. But there’s something to those friends in real life (IRL) that just make this journey smoother. Even my first year walking, folks I walked along with chatted me up. Instantly, you have some kind of connection, and most everyone is hungry to feed that need for connection. I still count some of my closest friends as people I’ve met along the walk route over the years. And going on to help run the walk and help people build teams helped me find some amazing friends who get it too. When my daughter was growing up with diabetes, I had friends I could call at 2:18 a.m. to ask if they thought I should correct or not. Now those are some amazing friends.

My daughter, now an adult with diabetes, found the same to be true. She had her diabetes camp friends, but she had her walk team friends too; other kids who had teams who are now adults with Type 1. Last year I watched them all dancing around at our gala, adults now, taking turns holding all the CGM receivers and sharing tips on cocktail parties and diabetes. It all started with walking.

Go Islets - Diabetes Advocate

*Our friends who didn’t get it learned. And got it. When we saw all those big teams at that first walk, we knew we wanted in. So I worked on sending out letters and inviting everyone we knew. But I set some rules to joining our team: First, you must do some fundraising. I set the goal low so folks would not be intimidated, but I wanted them to understand the point of the exercise. (I actually know people who think just walking will do it. Like … walk around this course with a T-shirt on and diabetes will be cured. Nope. If only it were that easy.) But the second requirement might have been more important to what we’ve gotten back from it: anyone who walked with us needed to understand what Type 1 diabetes is, how a person is diagnosed, what happens in the body and what is required for a person with diabetes to stay healthy and alive. Learn they did. Each of them became diabetes advocate, too. And since we started walking when my daughter was a little thing, this meant she grew up in a community of people who truly got it.

This helped in her school years – if a substitute teacher or someone pushed back on something my child needed, the kids all jumped to her defense. I remember my daughter telling me one child said, “Lauren needs those glucose tabs now!” That led to some funny things, too. One teacher reported a child asking to go to the nurse one day by saying, “I think my pancreas isn’t producing enough insulin. I’m really thirsty.”

It helped me too, While I still got my share of silly comments (like the mom in the Dunkin Donuts line who said to me, “It’s such a shame when you think if you’d just fed her right ….” My eyes turned into laser guns and turned her to dust right in front of me. But overall, we grew in a community that got it, and still does get it.

I also asked them to check on the ‘send me updates on research” box when they signed up to be walkers, as well as the “I’ll be an advocate” box. Some may have opted out over the years, but to this day, I hear from friends who have just read the latest or taken action on an advocacy call. They’re still with me on this. What a gift it has been.

*We have a sense of empowerment in a world sometimes gone mad. We all – adults with Type 1 or parents of kids with it – know that feeling. That I-swear-I-counted-those-carbs-right-and-injected-in-a-good-spot-and-made-sure-all-went-well-and-I’m-still-high feeling. Diabetes can be enraging. We do our very best, and still have to settle for “okay most of the time.”

Doing the walk, forming the team, designing the shirts, planning the party (more on that in a bit) and yes, counting the donations always gave me a sense of forward progress and empowerment in what can sometimes feel like a world gone mad. And my daughter felt that, too. Even in the toughest times, we made a positive difference. That’s a really awesome mood stabilizer at even the roughest of times.

 Go Islets - Diabetes Advocate Moira McCarthy

*We have fun. I am going to say that again because it’s important: We. Have. Fun. Yes, that’s right. We took a terrible thing in our lives – the diagnosis of our beloved daughter with an incurable disease that requires constant attention, scares the woopsies out of us and costs a fortune in both time and money – and we carved something fun out of it.

Our walk day was always a huge party. We’d go into the city for the actual walk and then host everyone who walked (and anyone who donated and wanted to come) to a giant party in our back yard. Bouncy houses, sometimes live music, great food, diet soda and cocktails, made up the afternoon. We created our own special team prizes (such as the coveted “Youngest Walker Award” which, as the years went on, rumor has it folks planned pregnancies around). We partied into the night, and always ended up letting basically every child in our town sleep over afterwards. Yes, we had fun

And I know that matters. One year, when my daughter was still relatively young, as the party seeped into the night, she went to a stack of candles we had lit and asked all her friends to form a circle around them. I spied as she directed them to all hold hands and look at the pretty flames (she had no clue I was observing) and she said this:

“I might have diabetes, but I have this circle of friends. I have this day. And I have this happiness. I want you all to know I know that. Thank you.”

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Hasan Shah
Hasan Shah

thanks for sharing this, i really appreciated you explaining what a walk can mean to a JDRF family! having come from Advocacy, i am still learning of the so many other ways that the JDRF community can be of support!

thanks again and for all you do,

hasan 

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