Tuesday, September 7, 2010

A Diabetes Family Utopia

Imagine a place where the food is delicious, healthy, plentiful and you don’t have to prepare it.  Each dish has a card with the serving size and carb count itemized beside it.  Glistening silver punch bowls overflow with tubes of carb tabs, Skittles and Starburst candies to treat lows.  In this place everybody knows your name and you theirs (gotta love name tags) and speaks the same diabetes lingo you do.  When you discuss carbohydrate counts and the fat content of the foods your child is eating, no one looks at you judgmentally like you are grooming your child for a future eating disorder.    
Imagine a place where everyone understands, I mean, really understands what it’s like to live with diabetes every single day and night because they live with it too.  A place where there are energetic teens with type 1 diabetes who happily and competently care for your D and non-D children while you immerse yourself in learning more about the many facets of diabetes management.  In this magical place no dishes need doing, no tables need setting and no meals or snacks need preparing (well, not by you anyway).  The coffee and tea is freshly brewed and on tap all day long to help you stay awake and alert in spite of your chronic state of sleep deprivation.  
It is a D-family’s Utopia.  And it exists.  I know.  I’ve seen it with my own eyes!  Trouble is it only lasts one weekend then it’s gone, like a glorious fleeting dream that you are awakened from all too soon.
The girls pose with Medtronic’s Lenny the Lion
The Children With Diabetes - Friends for Life Conference came to Canada for the first time two weekends ago and welcomed over 500 more people into their family.  We were lucky enough to be among those people. 
Conference attendees take part in two and a half days of mingling with other D-families and attending lectures by people who have made diabetes and it’s management their life’s work, often because it has touched them on a very personal level.  People like Gary Scheiner, a certified diabetes educator and exercise physiologist.  He also has type 1 diabetes, diagnosed 24 years ago, and likes to open his talks by sharing the irony that his diagnosis took place in Sugarland, Texas.  No lie. 
I was pretty pumped (pun intended) about hearing Gary Scheiner speak.  He wrote the book "Think Like A Pancreas" which is a must read for anyone managing type 1 diabetes either with MDI’s or with an insulin pump.  I refer to him as “The Pump Whisperer” because he has many tricks up his sleeve to help people get the most out of their insulin pump.  I attended every talk Mr. Scheiner gave that weekend, feverishly taking notes like some super-keener, nerdy college student determined to pull off straight A’s or die trying. I hope he doesn’t think I was stalking him... 
George Canyon performs at CWD - FFL Canada
Meeting George Canyon was pretty awesome too.  I’m not the biggest  country music fan but he won me over when he opened with Johnny Cash’s “Ring of Fire” at the Saturday night banquet.   He also has an amazing presence and charm that is impossible to resist.  Earlier in the day George could be found outside the large conference room taking pictures of individual children with type 1 diabetes, with their parents consent of course.  He intends to display the photos as a slide show presentation while he performs at the CCMA on Sunday, September 12.  George himself was actually taking the pictures.  So if you plan on watching that awards show you just might see Jenna’s face appear on the screen behind George along with the faces of many other type 1 diabetic children.
  
But the absolute best part of the weekend was being surrounded by people who understand because they live it like we do. The dessert served at the Saturday evening banquet was cake with a thick, buttery, chocolate icing.  I suspected when she ate it that Jenna’s blood sugar would go rogue hours later while she slept.  Sure enough, she spiked pretty high between midnight and 3am.  When we were getting up every 2 hours to hack down her ever-rising blood sugar I wondered how many others in attendance were waging the same wee hour war on a post-cake high like we were.  It was oddly comforting knowing we were likely one of many.

Dancing in front of the Olympic Cauldron in Vancouver 
Looking around and seeing a pump on every other person’s waist, seeing people pull out their meters to check before meals, watching parents as they loaded up their child’s plate and took careful note of the carbs in each item, it made me feel like we weren’t alone after all.  But at the same time it moved me to tears knowing just how many lives are affected by this disease — a disease without a cure that is on the rise and no one really knows why.
Throughout the weekend, on occasion, I found myself sitting quietly, emotions surging, scanning the conference room, conscious of the fact that I was surrounded by so many incredibly brave people — children and adults with type 1 diabetes as well as the families that care for / about them.  I was humbled and honored to be there making their acquaintance, offering and receiving support.  
And I want to go again, a whole lot.   

3 comments:

Alexis of Justices Misbehaving Pancreas said...

I wish I could go, wish I was there. WIsh it never needed exist in the first place.

Karen said...

Oh that sounds like such a great experience!! I'm so glad you got to attend.

Lorraine of "This is Caleb..." said...

It really does sound heavenly. I'm so glad you were able to take part in it.