Sunday, February 24, 2013

Megan


Something pretty special for everyone tonight:

Recently Heather and Megan Henbest joined Team PowerTrain.  Their Mom, Suzanne also signed on to help the Tour as a volunteer.  Megan  is a Red Rider who was diagnosed with Type 1 diabetes at four years old.

I asked Suzanne if she'd share some of what it's like to live with T1 every day with all of us on the team and in nothing flat, there was a message in my inbox.  I have to tell you, it's an inspiration to me.  It reminds me why we ride.  It's not for ADA; it's not for the Tour; it's not for NS; it's for people like Megan and her family who live with diabetes and have waited a long time to hear that there's a cure.  It puts a lot of things in perspective.

So without further ado...here's a T1 Mom with 'the rest of the story':

"Our story really begins in 1976 when my husband Ted, the youngest of 4 children was diagnosed with Type 1 Diabetes.  At that time technology was fairly scarce and treating type 1 diabetes meant taking insulin shots two or three times a day and eating “on demand” at certain times of the day and avoiding sugary foods and sweets.  Over the years technology has advanced dramatically and Ted was able to experiment with new therapies until he found the one that worked best for him, he could eat what he wanted to in moderation; inject insulin when needed and diabetes no longer ruled his life. We married in 1987 and in 1989 began our family with reassurance from the doctors that Type 1 diabetes was rare; and the likelihood Ted would pass this disease only to any of his children was less then 5%.

On March 30, 1999 our family was complete with the birth of our youngest daughter Megan.  In a family with three children each looked to proudly claim their rights as “first born”; that would be our Heather; the first son, that would be our “Teddy” and the “baby” Megan had the honor to be born on her father’s birthday.  A bond Ted knew would carry them through a lifetime, never dreaming that in just 4 ½ years they would share another bond when Megan was diagnosed with Type 1 Diabetes.  As I witnessed my husbands despair at the news it dawned on me that T1D is not as “easy” as he made it look. I quickly learned that Ted sheltered me from much of his daily battles determined not to let T1D define who he is.

Fast forward 9 years later to current day and I can tell you taking care of a young child with T1D is not for “lightweights”.  It is a 24 hour a day job; 7 days a week; 365 days a year; no vacations, no holidays and no days off.  Add to that the hormonal pre-teen and teenage years and can imagine the daily struggles. We are fortunate enough that research has led to incredible advances in technology that has improved the quality of life for our daughter and for that I am incredibly grateful.  The technology isn't perfect; I still check Megan every night before I go to bed and once in the middle of the night.  

There is this terrible, awful, unthinkable complication from Type 1 Diabetes; crudely referred to as “dead in bed”.  A parent’s worst nightmare, their child or loved one experiences a very low blood sugar while they are sleeping and does not wake to treat the life threatening low blood glucose with a quick acting sugar.  Despite all your hard work at checking blood sugars regularly (6-10 times a day); frequently meeting with your team of caregivers and routinely reviewing your blood sugar data you never are quite able to “control” diabetes.  I watch Megan and countless children like her persevere with courage and determination to live their lives fully and never let Diabetes stop them from realizing their dreams.  So until there is a cure I will continue to check Megan’s overnight blood glucose levels to make sure she wakes up from all her dreams; to fulfill her dreams. 

I think I speak for many when I say I am proud to be one of the “chosen ones” to parent a child(ren) with T1D and we will selflessly make daily sacrifices to ensure our children stay as healthy as possible until a cure is found.  Those of you without T1D do have a choice and we sincerely appreciate your dedication to finding a cure."

Our sincere thanks, 

Suzanne, Ted, Heather, Teddy and Megan Henbest

No Suzanne...thank you.  

You and your family are the reason we do what we do!


Friday, February 1, 2013

What A Day It Was

January 31st...

Last night as I was browsing around the 'net, my email started beeping with new messages.  Every time someone joins the PowerTrain I get a notification from ADA so I can check my Tour Center and see who signed up.  Last evening my inbox rang like the doorbell.  I don't know if it was the 'In Training' shirt offer about to expire or what...it certainly wasn't the weather!  The wind was blowing snow horizontally across the deck but lots of people sure were thinking about bikes and Tour de Cure!

I can't say for sure but I think we set some kind of record for Team NS this week.  We went from 37 to 45 on the roster faster than I could update the team Facebook pages.  We shot up to over $700 in donations in the process!  There's now four Red Riders and six active NS employees on the team as well.  And it's February...where will we be in July?  Wow!!

I can't tell you guys what a great feeling it is to be the captain of a team like the PowerTrain.  I'm amazed every day by what you do and the enthusiasm you bring to the FLX Tour.  You make my job easy and I thank you!

The Captain