Friday, October 26, 2012

D-anniversary

This summer at the CWD conference the closing speaker was Jay Hewitt, who is a triathlete living and competing with Type 1 diabetes.  He ended his closing speech by challenging us to make T1 the best thing that has ever happened to us.  364 days a year I try my very best to live up to that challenge.  But there is 1 day a year I just can not.  And that day is here.  It’s the day I dread all year.  It’s October 26, Ben’s D-anniversary.  This is day three years ago we received the official diagnosis, Ben has Type 1 diabetes.

I am unsure why this single date on the calendar has so much power over me, but it does.  As the days tick away … Oct 23, Oct 24, Oct 25 … the pit in my stomach grows bigger and heavier.  And now today, I try to hold back the tears.

People often remind me (and I often play this game myself) that there are good things that can come from the bad.  Over the summer we were visiting family and someone suggested since Ben’s diagnosis we have grown closer as a family and we have done great work advocating and raising money for T1 research.  I politely agreed.  But what I really wanted to say was that I would give that all back (plus more) if Ben could have just one more day without the heavy burden of this disease.

Three years ago Ben lost a working pancreas and a care free life.  And as a mother my heart broke and three years later my heart is still broken.  I know this diagnosis is not mine, it is Ben's.  Ben is the one who has T1 and not me.  But as a mother it is hard to separate yourself from your child's pain. 

However, my sadness is about more then just the loss of a pancreas.  Before Ben’s diagnosis we were living the life I had always dreamed of and worked for.  As a girl I dreamed of marrying a nice loving man, Check.  I dreamed of having a challenging and rewarding career, Check.  I dreamed of owning a nice house in the suburbs, Check.  And I dreamed of having three great kids, Check.  I always believed I had some control over my life and if I worked hard and made all the right, moral decisions everything would be ok.  Then on Oct 26 2009, I learned that is just not the way life works.  I do not have the control I naively believed I had.  And without that control things can get kind of scary.

Ironically, “control” is the very word that is often used when talking about living with T1.  I am frequently asked, “Do you have Ben’s diabetes under control?”  I hate that question because we do not. (Please don't ask me ...)  I don’t have the power to control Ben’s diabetes anymore then I had the power to prevent him from getting it in the first place. It just doesn’t work that way.  

Today the tears I hold back are fueled by sorrow but also by fear.  I mourn both the loss of a pancreas and the loss of my carefree childhood dreams.  But tomorrow I will put my happy face back on, I will focus on the positive, and I will remember Jay Hewitt’s challenge.  And as long as I can remain brave, I can still make T1 the best thing that has ever happened to us.

5 comments:

  1. Sending all sorts of hugs and well-wishes your way.

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  2. You are as brave as anyone I know!

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  3. Thanks for all the well wishes!

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  4. Diabetes sucks and that's a fact. Celebrating the anniversary is not my thing. My guy, now 20, was born with Down syndrome and diagnosed with diabetes at 18 months. December 2011 he was also diagnosed with Celiac disease. I have learned a lot about his character on this journey. Jake is my hero and the bravest guy I know. He does not let diabetes slow him down. He just deals with it. I bet Ben is amazing too. I loved the rant because as a mom I get it.

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  5. God bless your family, aprilancedotes! Your family, along with so many other T1 families, give me Hope. And with hope I can be brave. So thank you.

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