Thursday, April 22, 2010

Two hundred and twenty people... Oh boy...






People say I have a talent for writing.  I do it because I enjoy it, I find it relaxing, and it's really a form of therapy for me.  It helps me get my thoughts collected and organized so that I can make sense of things.  That's one of the reasons I started this blog in the first place.

Tonight we had our Family Walk Kick-off Dinner for our local 2010 Walk to Cure Diabetes.  I've known for a couple of months now that I was going to have to get up in front of our local families and say a few words.  I am NOT big on public speaking, but my role as Family Walk Chair is very important to me and this is part of my responsibilities in that position.

I have a vague recollection, moments after taking to the podium, of going deaf and somewhat blind.  All I could hear was the sound of my own voice and I couldn't see past the first row of tables.  I had to follow two of our youth ambassadors, and after listening to them tell their stories I was already on the verge of tears.  I had promised myself over and over, all week long, that I was not going to break down as I talk about something very important to me, and now I have two heart-felt pleas pushing me to the edge already.

Now, I'm not one to toot my own horn.  In fact I'm probably my own worst critic, but I had so many people come up to me after I left the stage that I thought 'what the heck, maybe I should share this again'.  And considering that the people here, online, were partially responsible for inspiring what I said tonight, I decided to:


Good evening, my name is Marc Beneteau and this is my first year as Family Walk Chair for the Windsor-Essex TELUS Walk to Cure Diabetes.

When I was asked to come up here and speak to you tonight, my first instinct was to tell you a little bit about my son and our family.  I was going to talk about his diagnosis and how our lives changed.  Over the last several months we've come in contact with a number of parents and families, and we've all shared our stories and experiences.  Through these exchanges, I began to realize that I don't need to tell you my story, because you've all lived it for yourselves.  You've been through the diagnosis.  You've seen the challenges, the good days and bad days.  You know the dangers and fears that together we all live with.  You know the monster on a personal basis, and in many cases you know it better than I do.  So I don't need to tell you what you already know.

Instead of talking about my story, I'd like to talk about our story.

We are all members of a club.  A club with a price of admission far too high.  A club that none of us wanted to join, yet membership grows daily.  Nevertheless, we are in it, and I quickly learned that we are in it together.  Not only do we have a disease in common, but we also have a community.  We come together at fund raisers and events like this; we come together with our friends and in our online groups.  I started a blog about a month ago, and within the first 24 hours of releasing my very first post ever I had about a dozen comments from people across North America, most complete strangers, offering words of encouragement and support.  There is this, I don't know what to call it but, there is this "thing" that draws us all together and drives us to support one another.  It is a beautiful and powerful thing and it makes us a force to be reckoned with.  It is our passion that drives us and our determination that will make us successful.

My spelling has been recently re-defined, and the letter D pops up a lot, like in the word parent.  36 years ago, a community of D Parents, not unlike ours, founded what is today the leading charitable funder and advocate of diabetes research in the world.  Great strides have been made in treatment and management, but our ultimate goal has not been reached.  Our holy grail is still out there, waiting to be found.  We few here, are part of many that are working to one common goal.  Our community is part of a group, spanning the globe, that all want the same thing.  Like you, I want my loved one to be able to say "I had Diabetes, but not anymore."  I want them to be freed from the shackles of this disease.  I want my grandchildren to only lean about Diabetes in History class.  It is a long road, but I know we will get there.

We are here tonight to officially kick off our 2010 Walk to cure Diabetes because we all want to make this disease a thing of the past and we all have it within us to bring our extended family closer to that goal.  Our Windsor-Essex community makes a valued contribution each year to JDRF’s research and education projects.  Most recently, a significant investment was made in cooperation with the Government of Canada in the Clinical Trial Network, focused to speed advances in cures and therapies for diabetes and its complications.

There is no one that this is more important to than us, and our continued support is imperative.  We only have 52 days until Walk.  If you have not done so already, I urge you to register online as soon as possible at www.jdrf.ca/walk.  It's easy to do, allows you to reach all of our contacts quickly, and provides them with a simple and convenient way to support our cause.  If you need any assistance in getting set up, please let me know and I'll make sure we get you started.
 

Thank you all for coming here tonight to show your support.  Enjoy the evening; celebrate our community and our successes so far.  Tomorrow, we continue walking that long road together.
 

- Thank you!

Tuesday, April 20, 2010

Super Troopers

Kids are amazing.  They are resilient and stronger than we, or at least I, tend to give them credit for.  Sometimes I forget this, but in the darkest times they are my light.  If I had to pick the two worst times in my life they would be when my father passed away, and when my son was diagnosed with Type 1 Diabetes.

This past Sunday, April 18th, was the sixth anniversary of my fathers death and got me thinking about it again.  Our daughter, Alexandra, was only 4 months old at the time.  My dad made it just long enough to meet his first grandchild and visit with her a few times before the complications of MS took him from us.  She doesn't know it, and probably wouldn't understand right now, but she was the one person that got me through the most difficult time that I had ever faced.  A new life that gave me the hope and the strength to deal with a huge loss.  Now six years old she is growing up to be a granddaughter he would be proud of.  She's my #1 little girl.

It's hard to say which was worse, losing my dad or finding out that my son would be battling a potentially life-long disease, but I'll settle for a tie with the disclaimer that each one has it's own unique issues, just so that I don't have to dwell on the choice.

Throughout his hospitalization, starting school, working to find our new "normal" and even now, there is one person that I look up to for strength and reassurance.  There is one person that proves to me that when it comes to keeping the D at bay, life goes on despite the extra care and management.  When it comes to facing this with a healthy reverence and an intrepid presence, Jonathan is my shining example.  With the most at stake in this and the one to have to carry the burden, he goes on like nothing ever happened.  He understands that pokes and shots are necessary, accepts it as fact and routine, just does it and moves on as if it was nothing more than a brief pause.  As I wrestle with the "what ifs" and contemplate the down-sides, I suspect that his youth and innocence go a long way towards a naivety that allows him to go day to day without comprehending the horrible potentials of this disease. Even though he lives with the monster, he's just business as usual.  He's my #1 little guy.

As he grows and learns, I'd like for him to be able to maintain that apparent objectivity even as he adjusts his views and opinions based on his experience and education.  I hope that as he matures, he'll be able to preserve a little bit of that child-like clarity to help keep things in perspective.

Two of the worst things that I could imagine happening, and two kids that got me through it.  I owe them a debt that I could never repay.  I could try and explain it to them, but I don’t know if in my words they'll ever really understand how much I rely on them.