I’m not a huge fan of writing about me, me, me. But I just feel like I have to share this. I promise the next post this week will be all about FFL from soup to nuts!
It was the first Friday of December and my husband and I were driving through the bitter dark of a moonless Vermont night, on our way to our first ski weekend of the season. Summer was the last thing on my mind.
Until my phone buzzed, telling me a new email had arrived. Restless with a slow part of the trip, I tapped my phone screen to life and read. And then hooted.
I’d been asked to join the faculty of Friends for Life, an amazing program created, nurtured and flawlessly run by the folks at childrenwithdiabetes.com. I’d known about the conference, well, since before it began (which was the year 2000, which was basically about 30 families with loved ones with diabetes all vacationing together; today it’s over 3,000 folks who have Type 1 Diabetes (T1D) or care about someone who does, all joined together for support, education, more than a few laughs, bonding and more education). Lauren’s camp session had always fallen on the same week, and despite the constant nudging of my good friend Ellen to go on my own, I’d never been (but for a quick two day swing-through in 2010). Still, I’d heard enough from friends to know it wasn’t just a week in Disney. It was a week in diabetes support, friendship and education nirvana.
So to be asked to join the faculty? World-known bloggess and diabetes champion Kerri Sparling will back me up when I say this: It’s not that far from being asked to play keyboards for Springsteen. Only the keyboards are your diabetes know-how and Springsteen is….. Jeff Hitchcock?
Anyway, I was pumped. And it took me all of a second and a half to fire back my response: yes. And yes. Oh and in case you did not hear me: YES.
So last week, a day before all the wicked awesome South of Bohhhh-Stun Fourth of July Parties were to start, I boarded a plane – along with my husband – and headed to Orlando. On the way I went through my PowerPoint for my session a few more times, worried I’d be good enough, and looked forward to what I was about to enjoy.
It’s hard to explain what it means to even be in a room with one or two more folks who “get it” about the diabetes life. After all, most of us spend our time pretending it’s cool, accepting that others just don’t get it and sometimes, education or getting frustrated. Now, when you get to the airport in Orlando, there are children left and right with absolutely beaming faces when they realize they are thisclose to Disney. For Friends for Life attendees, the beaming comes when they get to the conference site and they spot the green (for those who have T1D) and orange (for those who love someone who does) bracelets. Never mind Tinker Bell. You can have your Pluto. We get goofy when we are close to those who get it. And FFL is all about that.
So there I was, smack in the middle of the world I’d so long wondered about: the world of diabetes support, friendship and know-how. Only for me, being a “first timer” was a double. Not only was it by first conference: I’d be presenting too.
I was lucky enough to have time the first full day to attend both the opening keynote talk and a couple of sessions before mine. The FFL staff had asked me – way back in the winter–to do a session on “Letting them go.” It made me worry. Not because I don’t know the topic; I’ve actually just contracted with a great publishing company to write a book on teens and diabetes and that very theme. I was worried because, to put it simply: folks might not like what I had to say. I’ve long talked the talk of letting you kids live their lives despite diabetes here, but to say it to a live audience? Given the level of worry and involvement in care parents of today have, there was a chance I’d get tomatoes tossed at me. I totally got that: I worry and care too. I just hoped they’d understand I’m trying for the combo of both doing that and letting go. Yikes.
But in his opening address, CWD Founder Jeffrey Hitchcock said something that let me know I was not alone. Here it is:
“We don’t do diabetes care for the next a1c. We could just check her into a hospital and do that. Rather, we do diabetes to help our daughter live a full and HAPPY life.”
Bingo. Exactly. He said what is not only in the heart of my upcoming presentation; he said what was in my heart. It was like he was teeing it up for me. So off I went to a session on sending your kids to college and then to hear the amazing Phil Southerland talk about forming Team Type 1. Soon, it was time for me to get ready for mine. I went to find the room I’d be presenting in to get my bearings. I expected something intimate. I’d contemplated using a white board for conversation but stuck with a Power Point. That way, I’d planned, I could adapt if there were only 10 people or as many as 50. (Secretly I was suffering from college-keg party at 7:45 p.m. syndrome. As in: “No one’s gonna come. No one’s gonna come!”)
Then I walked in. Ummmm….the room was HUGE. I mean ballroom huge. With my PowerPoint cover page on a giant jumbotron. Oh, no. I thought. The two or three dozen parents who were hungry to learn to “let their kids go” would feel swallowed up whole in this cavernous room. I suggested to my husband that we keep folks near the front and just make it a circle of chairs if it was a really small group.
Then they started coming. And coming. And filling up the room. Before I could say “forgotten bolus” the room was crammed with parents – all there to learn how to let go.
All told, almost 1,000 folks filled that room and listened, responded and shared freely.
And it hit me then: I was totally not alone in my determination to NOT let diabetes take over my daughter’s entire life. In these recent years of feeling like I was screaming down an abyss about our need to figure out how to let go and let our kids live wholly and happily, I could have just looked around me and spoken softly. Because there they were, right in front of me: a sea of parents determined as well to get brave enough to let their kids go live their lives.
I won’t say if I was good or bad or slow or too fast. I am my own worst critic and I expect the world plus a few planets from myself in such situations. But I will say this: that group started a conversation that is still going on. Most of them, if not all of them, have started the process of embracing not raising a child completely based on the a1c. They’ve opened their minds to, as I said, “trusting your mom (or dad) gut but sometimes just sucking it in and letting kids go.” They want to raise healthy kids who also happen to do whatever their heart tells them to do (within reason). That rocks.
For the rest of the event (and I have much more to share – check back Thursday for a complete rundown on all that happens at FFL), I kept bumping into parents who would stop me to talk more about the subject. Most, like I’ve been in my life before, were scared about the idea of introducing more freedom to their child’s life. But most said they were ready.
What a gift I was given on that cold winter day. When I screamed YES as I emailed that yes back, I had no idea the impact doing this would have on me. Because FFL has given me more friends and more contacts but way, way more than that.
It’s given me more confidence in my choices with my daughter. It’s given me more insight into who we are as a community and how very much we truly share. It’s given me faith that until the cure and has a big, giant team, we can get the better of diabetes (and it cannot get the best of us). It’s shown me that thousands of former strangers, bonded together by the sheer will to win over the big bad diabetes can become family – in an instant and even in some ice cold air conditioning on a hot Florida summer day. It’s reminded me that as we all learn and grown and make mistakes and recover and get better at all this, the best thing we can do is share.
How blessed I am to have played keyboard for Springsteen. How hungry I am for more.