Friends for Life Recap: Why it works so well

July 26, 2012By 14 Comments

What follows is my attempt to explain what’s great about CWD’s Friends for Life Orlando. There is so much that happens there. If you were there and feel I missed something, please add it in the comments section! Thanks so much.

Okay so first of all, it isn’t like I’ve never been in a place with a bunch of people who really, truly get it when it comes to living life with Type 1 Diabetes on board.

There are the many, many JDRF Walks I’ve loved over the years. There’s the JDRF Annual Conference which I’ve not only been lucky enough to attend, but was also blessed to chair one year. There’s the remarkable, life-changing JDRF Children’s Congress that we attended as delegates and then were chosen to chair. There are the gabillion support groups I’ve attended over the years.

But while each of those was (and is) amazing, none of them are exactly the same as Friends For Life. At the walks, I loved being surrounded by the sea of colorful shirts, smiling faces and folks who are passionate for a cure. It’s always been like a day spent marinating in hope for me. I’d leave with true hope and faith seeped deep into all my pores. But there was almost never time to sit down and truly talk to someone; to bond on a personal and life-long level.

Annual Conference is remarkable in more ways than I can count. Research updates, motivational speeches, training for fundraising and outreach, and tons of really awesome adults working toward the same goal. The bar is a blast too – but for the most part, there are usually almost no children or complete families there (and for good reason. This is not meant as a criticism; just an illustration of why someone who’s been around the D-world as long as I have could still find something new and wonderful in FFL).

Children’s Congress is absolutely one of the most powerful events I’ve ever experienced. I will forever be honored to have chaired it and will never forget what it has done not just for our family but for the world. But “only” 150 kids can go. Thousands apply. How I’ve always wished the event could fit them all.

So now, I know what Friends for Life is like too. And I can tell you, it’s like a wonderful morph of all those things I’ve experienced in the past, with a giant dollop of something completely new. The best way I can explain what it is and what it means and what it does is to share some scenes with you. I hope these help you feel what FFL is all about.

Registration: Okay, so you are basically just signing in, picking up your packet of information, getting your credentials and having a wristband (either green or orange) put on. NBD, right?

Wrong. Walking down toward registration, my heart was fluttering in that “my prom date is about to arrive” way we only feel so often. And I can tell you by the electricity in the air, everyone else felt the same way. There’s something about walking toward a place you know you belong in, even if you’ve never been in it before. I was so excited, I honestly wanted to jump over the desktop and hug the woman checking me in.

Decorating nametags, noticing wristbands, and bonding

And the wristbands. They are two colors. Folks with T1D wear green, folks who care about someone with T1D wear orange. Once they are on, you find yourself looking not just at yours, but at the wrists of everyone who walks past you. Even off the grounds of the conference, you’re looking for the colors; looking for compatriots, looking for connections. It’s so flipping cool that many who attend FFL try to keep their wristbands on for as long as they can (and how cool would it be to spot one, weeks later, out in the wild?)

Right away, FFL finds a way to help people connect. There was a special booth for first-timers to converge at, and a long table with stickers and the like to decorate your name tag with. Sounds simple, but there, folks begin to bond. Introductions. Comparing pump skins. It starts, and takes off with the speed of light, from there.

The “bigger events.”: From the welcome keynote to the family banquet to the closing talks, the bigger events are far more than folks talking at you. Me – the woman who has been around the D-world for ever and ever it seems – I found myself scribbling down thoughts and quotes and ideas almost constantly. Some were new to me, some reinforced what I’ve held in my heart for a long time. And the combination of hearing from “just regular folks” like Jeff Hitchcock and Tom Karyla along with amazing world-famous folks like Crystal Bowersox, Ironman Jay Hewitt and NFL star Kendall Simmons is the perfect mix. Because as much as it’s way cool to hear how a champion makes it work, it’s just as cool – and important – to hear how an average joe (or joette) champions this life with diabetes along.

And while I’m kind of a music snob, Crystal blew me away. First of all, she’s quite talented. Even her newer songs drew me in, and my husband and I both went right on itunes to buy them. But more than that, she’s just a very real person; one who connects on a personal level with all the other green wristbands around here. Her Q and A with the kids on banquet night was one of the most giving, honest and lovely things I’ve ever witnessed. And this really blew me away: the next morning, I found her walking through the lobby, alone, looking for where she’d be appearing at the event that day. No entourage. No four managers and three assistants. Just Crystal, her guitar, her green wristband and a smile. Having been close to some other big “diabetes celebrities,” this just won me over. FFL is so amazing, big celebs will travel on the cheap, just to be a part of it. I love that.

The sessions: The learning is a huge part of FFL. Parents – -and kids – are offered dozens of sessions to choose from. From sending a kid to college to how to count carbs better to research updates to how the FDA works and more, there are so many to choose from, one can see why families come back over and over and over. And while all this is going on, the kids have their own programs. That’s right – mom and dad go off without the kids to bond and learn and even just breath. The kids are so safe – an amazing group of staff give their hearts and souls to run the kid sessions and watch the kids closely – and I know that in many cases, this is the first time parents have left their children for a few hours (something they need to do, if you ask me). Teens get to learn about driving from folks like race car champ Charlie Kimball, and are rewarded for attending their sessions with a full day sans parents (but with chaperones) at SeaWorld. FFL staff advise parents to split up and get in as many sessions as they can and then share the information.

Sessions for everyone!

On the last day there were separate sessions for Dads and Moms. I love this. My husband went to the Dad one, and it was the first time in 15 years he’s been at something like that. He loved it. And learned from it. “I need to be less hard on Lauren,” he told me. “I think I’ve judged her diabetes too much all these years.” Wonderful.

The rest of it: The pool. The breakfast area. The meet the faculty dessert session. The sports decathlon. The huge, fun and interesting exhibit hall. The Quilt for Life. All are chances to bond with folks, get to know them better and build friendships that last. It seemed strange but by closing breakfast, it felt like we knew almost all the 3,000 people there.

The morning I left, I helped a young woman who was traveling alone for the first time to FFL get on her plane. We’d just met that week but as she was ready to board the plane, we looked one another in the eye, burst into tears and hugged long and hard.

“Don’t worry. I’ll see you next July,” I told her, almost sobbing, feeling like she was almost a family member. “And until then, I’m here for you.”

And I meant it. I guess the big thing FFL gives you is an even larger community. And in this D-life, nothing helps more than a bevy of true friends. Orange wristband, green wristband; we’re all together.

Learn about FFL 2013 here.

Filed in: AdvocacyCampsdiabetes diagnosisfeaturedInspirationKids CanTeen Years and the challenges Tags:

Comments (14)

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  1. Kim says:

    Yes! That electricity in the air is hard to describe, and so magical. I miss it already! Great post, Moira! :)

  2. Wendy says:

    This conference sounds A-MAZ-ING!! WOW!! We are going to look into going to this. Like you, I’ve been around the big D for 25 years now with my husband and 10 years with our son. I love meeting others that “just get it.” Thank you for sharing your experience! “Orange wristband, green wristband; we’re all together.” Amen!

  3. stacey nagel says:

    CWD’s FFL is like an addiction
    Once you’ve attended..
    You’re hooked
    next summer will be our 11th FFL…
    nothing could keep us away
    We need our FIX !

  4. Katie says:

    This sounds like such a good time. I went to one in California, years ago, in the fledgling years.Wish it could be out here more often. There is an entire Western half of the USA, you know!

    So nice your husband went also. Most dads do not, but so many dads ARE very hard on the kids with diabetes, and only out of the best of intentions. They just want to fix it. Sean is not alone.

    Finally. kudos to the kids who attend. Mine never wanted to go to anything (except Bearskin Meadow Camp) where the main identifier was diabetes. He has always rejected that as being anything other than a “small part” of who he is. And while I really think that is a healthy attitude, I also believe that mixing with others who have that “small part” could be so useful.

    Anyway…maybe someday there will be one on the West Coast again.

    Thanks for sharing your experience!

    • Kristi says:

      Consider going as a family. Your son doesn’t know what he’s missing. Bonding with others with Type 1 and their siblings, and making life long friends is priceless. My daughter is 13 and was dx’ed 1 1/2 yrs ago. This was our first year to attend and I was amazed to see changes in her even while still at the conference. Peer influence, peer pressure, peer bonding, along with additional education and a free trip to the amusement park without parents if he’s a teen. It really Normalizes the kids.

  5. Lauren says:

    I want to go next year so badly! You’re right about the walks and Children’s Congress…now I want to add that extra helping of whipped cream tot the top of our major D experiences!
    And you nailed it about Crystal B. she was so available to the kids at CC – an absolutely beautiful person inside and out!

  6. Brandy says:

    Moira… Well done! I am sharing this with everyone so they can hopefully understand why my FFL time is vital to my well being? I love CWD and FFL… So many amazing wonderful people!!

  7. Ash says:

    Well said Moira, I’ve shared this on FB.

    We first experienced FFL in 2008, following Jeff Hitchcock’s direction to ‘make plans for Friends for Life’. We had no idea where this would take us – now we’re activeley involved in the third FFL in the UK (sold out in 24 hours this year).

    It’s hard to explain, but you did a great job here. As for Jeff, Laura, Mike, Tom, Joe, the amazing backroom team, the faculty, the vounteers … ‘ordinary’ people doing extraordinary things.

  8. Kristi says:

    You are right on, Moira. I didn’t realize how magical even registering would be. We were going to register once we returned from Universal Studios, but as we walked past the registration table to go to the parking garage, the kids got so excited that we just had to register and decorate our name tags before we left the hotel.

    One thing I would like to add is the changes in the kids. My daughter was dx’ed last year at age 12. She has done well with it, but went through the 13 yr old “I don’t care” why I’m high syndrom. So we came off the pump for several months to get better control of her numbers. Well, She decided she wanted to try the pump again while at the conference since everyone else would have one. The FFL conference was a life changer for her. I saw changers in her behavior even while at the conference due to peer influence from her new friends. She decided she didn’t care if others knew or saw her pump, she was told by her fiends therefore decided she should where her pump while playing volleyball, and she wanted to work on getting her A1c lower. Afterwards, she went to the Texas Lions Club Camp for Type 1 Diabetes (which seemed to help re-enforce) and now is more careful about calculating her cards. I even caught her counting out the gold fish she was about to eat as a snack. FFL is the best experience for parents to bond with other patents and kids to bond with other kids: priceless

    • Moira says:

      This is so wonderful. I hope she sticks with it. and if she does not, just bring her back again to bond with other teens. See you there next year???

  9. sarah wells says:

    Its all that she said.. you just have to live it for yourself. I cant wait for year 3!! FFL For Life :)

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