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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The Teenage Tree of Trust

Being a teenager is hard. Being a teenager with type 1 diabetes…well, it has its own challenges.

A couple of weekends ago I had the opportunity to volunteer as part of my local JDRF’s Teen Carnival. The event brought together about 42 teens with type 1 diabetes and their parents to encourage an open dialogue about their management of their diabetes.

The teens and the parents were broken up into separate rooms. The teens were given questions to discuss about their parents while the parents answered questions about their teens. The exercise was called the Tree of Trust. Answers were written anonymously on “leaves” and then hung on the tree for everyone to read. After the separate conversations, the parents and teens were brought back together. A local pediatric endocrinologist summarized the responses from both the parents and teens and provided recommendations based on his years of experience working with teens and adults in his practice, highlighting themes that were expressed during the session.

IMG_9686It was powerful to hear both the teen and parent perspective. Parents were reminded about the importance of giving their teen independence and not to be so quick to anger or blame when things don’t go well, while teens learned the importance of honest and open communication with their parents, even when they make mistakes.  As I looked around the room from the back row where I sat, I saw parents and teens exchange knowing looks and sly smiles as different topics related to them and their relationship. While it’s challenging to manage your diabetes as a teen, everyone in the room had already taken a great step in the right direction just by being there and listening.

I was a moderator in the teen room and sat at a table with another moderator and 4 teens. As we talked about each of the questions, I was struck by how similar my struggles were as a teen. I remember the challenges of trying to fit in with my peers when my diabetes set me apart, of trying to be independent, and having so much to think about at all times.

I didn’t have the opportunity to participate in a program like the Tree of Trust when I was a teen. I think I had pretty good communication with my parents as a teen, but it still would have been an interesting exercise to go through together. Well since I can’t travel back in time, I decided to go through and answer the questions now, as a 27 year old, remembering my years as a teenager. I sent my mom a sampling of the questions that were asked at the session and had her answer them also.

____________________

Questions for the Teen

(so these are my responses about my parents, thinking back to when I was a teenager)

1. What do we do well as parents and what do we do with your T1d care that is successful? (I combined two questions since they’re so closely related).

You’ve done an amazing job since the day I was diagnosed of teaching me that I am not my diabetes, and that I can do anything I want to do even with my diabetes. You encouraged me to play sports, to go away to camp, to travel (and years later to study abroad), and just be myself. Whatever the situation, you found a way to make it work with my diabetes. This was such a strong message for me as a teen that I internalized growing up. You also allowed me to be independent while still being a concerned parent. You helped me when I needed help, but you encouraged me to take responsibility for myself and my diabetes.

I remember checking my number and shielding the number from you. I think it was because at the time, I wanted my privacy even when it came to my diabetes care. And I appreciate that most of the time you respected that and trusted me to do the right thing. You always just wanted me to be safe and healthy, you never got mad even when I was going through a rough time with trying to get my numbers under control.

2. What can we do differently with your T1D care?

I know that you’re just concerned, but it can be annoying to constantly ask me what my blood sugar number is, or remind me to check my blood sugar or to bolus. Most of the time I have already done it, and if I do miss it, it’s a lesson for me to learn. While I do appreciate the reminders occasionally, they don’t need to happen constantly. I also get annoyed when I say I don’t feel well and the first thing you’ll ask is what my number is. Not everything about my health is related to my diabetes, and usually I can tell the difference between not feeling well from being high or low or there being something else wrong.

 

Question for parents

(these are my mom’s responses about me)

1.What did I do well as a teen and what could I have done differently?

You wanted to be very independent with managing your diabetes from the very beginning which is most positive. Dad helped with the more technical aspects of the pump, ordering insulin etc. I helped with the logistics, wearing the pump in clothing, school lunches etc. I think counting carbs has been a challenge throughout the years.

2. What did I do with my t1d care that bugged you?

Nothing “bugged” me about your own t1d care. (ok, wiping your bloody finger on your case).

3. Why do you not trust us?

I’ve always trusted you. Double checking on t1d care would only be a sign of love and concern when a parent who does not have diabetes cannot “fix” this condition for their beloved child. It is not judgmental in any way. When you have a loving, respectful, trusting relationship, you work through things together.

4. What did I do with my T1D care that was successful?

Accepting with grace, courage, dignity and even humor, this unwanted and challenging aspect of your life. Taking steps in your life to find a way to help others with this same disease and other health issues. Using your gifts of introspection, insight, intelligence and sensitivity that shines through in all you do.

5. What did I do with my T1D care that disappointed you?

Nothing that you did with your t1d care disappointed me. You are, were and will forever be my hero.

____________________

I know how fortunate I am to have parents that have always been there to love, support, encourage, and believe in me in everything I do, including managing my diabetes. Being a teenager with diabetes was definitely challenging at times, but looking back, I can see how everything I went through made me and my relationship with my parents stronger in the end. I hope other teenagers and parents have the opportunity to go through a similar exercise as the Tree of Trust, or take it upon themselves to have a similar conversation.

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/