Diabetes Self-Management Blog

If you’ve been reading my blog, you probably know at this point that my family and I are very involved with Children With Diabetes (CWD). We attended our first conference over eight years ago (only seven months after my diagnosis) and have been attending conferences regularly ever since. As I sit and write this the Monday after the conference weekend (which I staffed at for the first time!), my heart feels so full.

For the most part, I’ve attended a minimum of three conferences a year for at least the last six or seven years. This year however, between me and my twin brother starting college, and my family in general having more commitments than usual, the last conference we attended was the CWD Friends For Life (FFL) conference this past summer. I haven’t seen my conference friends — excuse me, FAMILY — since July. Almost eight months. That is the longest time I’ve gone without attending a conference, or randomly meeting up with conference friends, in years.

This past Friday was when all the staff members flew in (the conference was in Conshohocken, PA, just outside of Philly), and Friday evening we had a staff dinner. When I arrived and saw all the familiar faces, I couldn’t help but start to tear up… OK, maybe a little more than tear up. I hadn’t realized how much I missed my CWD family until I saw so many of them sitting all together in the restaurant. (I’m actually getting a little emotional thinking about it right now). It’s easy to stay in touch with Facebook, Twitter, Skype, texting, etc. but nothing compares to being in the same place at the same time as so many people you love.

There’s so much that I want to say about this conference. So much about how it affected me personally. It was pretty intense to actually see how different a person I am now compared to who I was a mere eight months ago at the FFL conference. It forced me to reflect a lot on my entire journey with Type 1.

The truth of the matter is that without CWD there is no way that I would be the person I am today. CWD has given me and so many others a place to feel normal. A place to realize that you are never alone in dealing with diabetes. I will never forget what it was like to walk into the hotel lobby of my fist CWD conference and see a young woman wearing an insulin pump clipped on to her pocket, with tubing sticking out. At that point, I was on a pump, but tried to be discreet about it. After that conference, I was proud to show off my pump, check my blood sugar in public, and if necessary, give the random correction injection for when I was too high.

When I first walked into the restaurant this weekend and saw everyone, I was overwhelmed by how much love I always receive from CWD. I was in awe of how different our walks of life are, yet how unified we stand. The CWD team is made up of doctors, nurses, therapists, stay-at-home moms, college students, Marines, teachers, and more. The diversity is a beautiful thing that makes it so easy to feel right at home. There’s an inexplicable magic that starts to happen the moment we all walk in to the hotel where the conference will be.

One of the most amazing things about the conference is our commitment to showing people that everything is going to be just fine. I had the pleasure of speaking with one mom at the end of the conference, who has a young son diagnosed less than two years ago. Through talking to her, I saw so much of who my mom used to be. A nervous, worried, anxious parent, trying to keep it all under wraps. I could see how hard she was working to stay calm, cool, and collected and act like she had it all under control.

After standing and talking with her for over 20 minutes, she would not stop thanking me for talking to her, and for being a part of the conference that changed her perspective on Type 1. The thing about going to a CWD conference for the first time is that you suddenly are forced to accept that though diabetes can suck, everything is going to be OK. You meet people who have had diabetes for over 5, 10, 20, 50 years and you just know that if they are doing it, so can you.

To be honest, I didn’t realize how much I needed this weekend’s conference until I got there. I’ve been so consumed with school and other things happening in my life, that I almost forgot how much I needed to be physically around my CWD family. I can’t explain it other than to say that despite the conferences being at hotels, going to a conference is just like going home. The moment we all get there, we pick up wherever we last left off. We constantly joke about how amazing it would be to just own a CWD island where we could all live and have CWD all the time.

Back to reality though, it really is the smallest things that make the biggest impact while at a CWD conference. It’s being low and having someone whip out tabs for you before you can even put your meter away. It’s running low on insulin and realizing you forgot an extra cartridge in your room and someone else having one right there for you. It’s not having to explain that 250 is not a good number. It’s about being completely understood by everyone around you for a weekend. For one weekend, you’re the normal one.

CWD has gotten me to the point where I’m not actively waiting for a cure. I am so content with my life as someone with Type 1 diabetes that if it happens in my lifetime it would be great, but if not, I’m really not that upset. I know that this may not be a popular opinion, but it’s the truth.

I was discussing after the conference that more than once kids and teens from the conference have said that they don’t even want a cure because of how happy the conference and relationships they’ve made through it makes them. It’s something you can’t understand unless you’ve been to a conference. It sounds crazy to say that someone wouldn’t want to be cured of a lifelong autoimmune disease, but to me it’s not crazy at all. Don’t get me wrong. Diabetes can be unfairly hard, frustrating, and emotionally taxing, but because of CWD the positives disproportionately outweigh the negatives.

This conference came to a close with a keynote speech by the extraordinary Tom Karlya (known as Diabetes Dad to the online diabetes community). He said something that I couldn’t agree with more: He said that the Children With Diabetes conference is his lifeline. It’s not only Tom’s lifeline; it is the lifeline of so many who have been touched by the magic of CWD.

I know that no matter what I end up doing with my life in the future, CWD will always be a part of it. My family is so tied to this conference as an entire unit. CWD has not only affected my life with diabetes, it has affected my life in every possible aspect. It has changed the way I view the world, the way I interact with people, and my appreciation for my family and friends. Through CWD I have learned the most important lessons in life, and for that I am forever grateful.

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Comments
  1. Matyam, this was quit the story, I think you spoke for all who have attended a CWD conf..
    Will see you and the family at FFL this summer
    in Orlando

    Posted by Ed Mattingly |
  2. LOVE LOVE LOVE IT i know exactly what you mean i had beth come and visit me a university i forgot how welcoming having another diabetic with you was and it made me relax and we knew if either of us had a bad day the other knew what we were going through. :)Also we ate our way through a whole lot of carbs xx

    Posted by Chloe Gillum |

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