I wish I had told you

Last weekend I traveled to Chicago with about 20 other people to volunteer with an organization called Project S.N.A.P at the JDRF walks. I’ve been volunteering with Project S.N.A.P at this walk for around 5 years at the same location in Palos Hills. I’ve talked about what Project S.N.A.P does in other posts so instead I want to focus on something that I observed this year. The people.

img_2755There were more of them! This year was probably the biggest crowd of people at the walk I’ve seen in years. It was a nice day, a little cloudy but warm for October so that always helps. I have mixed feelings about the event being bigger. If it was bigger because more support people, more friends and family members came together to support JDRF and their person with diabetes, then I love that the event is growing! But if it’s getting bigger because more people are being diagnosed with type 1 diabetes, well, then that just makes me sad.

At this walk, there was a special tent for newly diagnosed families where the T1D person and their family members were given blue bandanas to wear. This made it pretty easy to tell if there were newly diagnosed people at the walk. I scanned the crowd, and sure enough I found a handful of blue bandanas.

This event can be emotional. You can hear it in the voices of the parents when their eyes fill with tears as they talk about their son or daughter they’re fundraising for and the hope for a cure. When I see newly diagnosed kids and their families, I just want to go up and give them a big hug. Tell them that everything will be okay.

I recently gave a guest talk in an undergraduate psychology class during their unit on stress and chronic conditions. I talked all about the relationship between type 1 diabetes and stress. When I got finished with my talk, I opened it up for questions. The students asked a lot of thoughtful questions. One student asked, “If you could go back in time, what would you tell your 12 year old self?” (12 was the age that I was diagnosed at).

I would tell my 12 year old self the same thing that I wish I could have told all the newly diagnosed kids and their families. I would tell them, don’t ever let your diabetes hold you back from doing something you want to do. You can find a way. I would tell myself how I was able to study abroad for 6 months, to travel the world, to jump out of a plane and snorkel in the Great Barrier Reef. I would tell them that you are not defined by a number. That there will be a lot of numbers in your future, blood sugar numbers, A1c numbers, and those numbers can be frustrating and discouraging, but you are so much more than those numbers! And finally I would tell them that having diabetes sucks, but that you will be a stronger person because of it.

I didn’t get to say all of this to those newly diagnosed at the walk, but I’m saying it now. And hopefully, they or anyone else newly diagnosed will not only read this, but believe it.

 

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A Melody of Hope

I know my beeps. I know my beeps similar to the way a parent can recognize the cry of their baby. I know the sounds that my insulin pump and meters make. I don’t get them confused with other alarms, dings, and noises of everyday life. And since I’m usually not surrounded by other pump wearing diabetics, I know that the beeps are for me. That is until I go to a diabetes event. What a strange phenomenon it is to be surrounded by dozens of other diabetics. My beeps become lost in a sea of similar noises, mixing with the sounds of countless other pumps and meters. My unique identifier becomes a unifying force, a sound signifying a shared experience.

My contribution to this year’s mosaic mural

The past two weekends I’ve had the pleasure of attending 2 different JDRF walks, one in Chicago and one in Ann Arbor/Dexter. In Chicago, I was volunteering with an amazing organization called Project S.N.A.P, collecting artworks drawn at the walk by T1Ds, their families, and their friends to become part of a giant mosaic mural. You can read more about my experiences with Project S.N.A.P in this post, or on their website. The second walk I attended as a representative of the Young Leaders Committee of my local JDRF chapter. It was the second JDRF walk that I’ve ever attended as a walker.

I attended my local diabetes walk with my mom. The walk was in a beautiful Metropark, the path winding through trees with changing colored leaves. Although it was raining, it was still a beautiful and enjoyable walk. At one point my mom turned to me and asked if I was sad/upset that we didn’t really do these walks when I was growing up. I wasn’t mad. Mostly because I knew that my family always supported me. The walk that day was a perfect example. Knowing that I wanted to go to the event, my mom skipped her normal Sunday plans to wake up early and drive 45 minutes to walk in the rain with me.

But even though I am not upset, I know that I did miss out on some amazing experiences. When I looked around at the walks, I saw teams sometimes with 10-30 people all there for one special type 1 diabetic. They were there showing their support by physically coming together, by putting on their team t-shirt with their creative names and bright colors, and spending the morning dedicated to that one child with diabetes. I can only imagine how special that child must feel. Yes, they were being singled out because of their diabetes, but in a positive way. For at least one day each year, that child isn’t alone in their experiences. They aren’t the only child with diabetes. They are able to come together and see other children just like them, to meet and talk with them.

My parents had their own reasons for not pushing to go each year, but I know that if I had expressed an interest to attend these walks when I was younger, that we would have gone. Perhaps I didn’t know at the time what I was missing out on. I was content with the support from my friends and family and with the few other diabetics that I knew.  But these past two weekends while I stood in a sea of other diabetics, I heard those beeps, my beeps. And while it was confusing and odd to hear them, each beep seemed to say “You. are. not. alone. beep. We. are. in. this. together. beep.”

It was the melody of hope, of support, and of all the efforts to find a cure.

Color For A Cure- JDRF Illinois Family Day

This past weekend my sister and I drove to the Six Flag amusement park near Chicago to volunteer with the JDRF Illinois Family Day. We were volunteering with an organization called Project S.N.A.P, which uses art, technology, and social media as a means to communicate ideas, collaborate around a common goal, and activate change around different causes, in this case, finding a cure for type 1 diabetes. This particular project, Color for a Cure, is a partnership between Project S.N.A.P, the Ford Motor Company Fund and JDRF Illinois. A giant 4’x6′ mosaic mural is created from individual pictures drawn by JDRF Illinois children and families, members of the JDRF Illinois community, and students from across the Chicagoland area. After drawing a picture, participants are able to go online and see exactly where in the mural their picture is in the Project S.N.A.P Online Art Museum! This was the 5th year that Project S.N.A.P and the Ford Motor Company Fund have partnered with JDRF Illinois for Color For a Cure. Over the last 5 years, more than 10,000 artworks have been created! Below is a video from the 2011 Family Day, or you can watch the video from 2012 here.

I have been volunteering with Project S.N.A.P at the JDRF Illinois Ron Santo Walk to Cure Diabetes for a couple years now, but this was my first time attending Family Day. Project S.N.A.P collects pictures from both events, which are then are used to make up the mosaic. What’s so amazing about this project are all the individual pictures that people draw, but also how everyone comes together to collectively comprise the larger image. Kids will come over with their family and friends and sit down and start drawing. Even people that insist that they aren’t artistic or can’t draw end up making beautiful and colorful pictures with such powerful and inspiring messages of what it’s like to have diabetes themselves or have a loved one who does. They are messages of hope, love, support, and of coming together to fight for a cure.

Me holding last year’s mosaic mural

I had the opportunity while I was there to talk with a few families and some other type 1 diabetics. I always find it interesting to share stories and hear other people’s experiences. I talked with one young girl that was diagnosed at age 7 and another girl diagnosed in her 20s.  I also talked with some parents about what their child is going through versus my own experiences. It kind of makes me wish that I had gone to more events like this when I was younger, but I’m glad that I am going now.

It was a great day working with Project S.N.A.P and being part of this inspiring project with so many wonderful T1 diabetics. And after the event, we had a lot of fun going on the roller coasters at Six Flags. For once it wasn’t my blood sugars that were going high and then low and then high again!

To see the mosaic murals from the past years and to learn more about Project S.N.A.P, visit www.projectsnap.org/jdrf/