One Week after Easter

This is one of the hardest religious holidays for me.  I still to this day can not attend church on Easter.  I think about the promise and hope of a new beginning and quite frankly all I can see is the incredible pain my family has endured. I think about Tony and David continuing on with their lives without Joe. I think of his friends, aunts and uncles, cousins and grandparents moving on after his death.  I think about Joedance and what it means to so many as we continue to remember him.

On this Sunday after Easter I remember my son, so smart and with such a quick wit, taught us to live for today.  Who taught us the power of forgiveness.  Who taught us how to say "I am scared but with you at my side I will be brave."

Who taught us to say "I love you and miss you" to those who are important.

Easter Sunday

The last time we went to church with Joe was Good Friday service in 2006.  He was in a wheel chair and the stay was short since the incense make him sick to his stomach after a round or two of chemo.  He never went back to church again. Instead he searched for other reasons to understand his cross to bear.  Even when meeting with Gene Humphreys, who would do his service, he requested no prayers for him or our family.  He took the scientific path, the new adventure road and the way of not asking why but instead what will it be like when I am gone.

I often think of his bravery.  Knowing he was dying and how he did it with dignity and grace.  And the lessons I learned from him is that when it is your time get your life in order, invite those you care about to be close and take care of business left undone.  And before you go to sleep, before you end a phone conversation, before you depart from a visit always say "Love You" to those that mean the most to you.

Happy Easter Joe.  We love you lots and miss you tons.

 

Survivors Remorse

Today at lunch a woman I just met, but had a common denominator of cancer, expressed her survivor's remorse.  Everyday she asks why did I survive and those, including my son, did not.  She asks everyday how she survived and for what reason.

I do not know the answer to this question.  I am sure I never will.  I have stopped asking "Why Joe?". A bright young man with a future beyond belief had his life cut short before any of his dreams could be realized.

Maybe those who survive and those who have lost a loved one have a mission to carry on.  Survivors find another path for their lives.  Those of us who are left behind find a way to help others.  

Advisory Council

There we were sitting randomly around my living room as I conducted the second Advisory Council meeting for Joedance.  I went down my list of what has happened, what was to come and as I ticked them off I felt and knew I had made accomplishments in Joe's memory.

I have sat in meetings asking for sponsorships and donations and I have always felt the support  from Joe, my family, my Board and my Advisory Council.  All have given me the strength to carry on and move forward.   Thank you for your guidance.

IDENTICAL YET SO DIFFERENT

They look alike, walk alike and even have the same rub spots on their pants where their shoes hit on their ankles when they walk.  Their "twin talk" is fast and abbreviated as they supplement words with nods and hand jesters leaving us in the dust as we try to keep up.

As much as they are alike they are very different.  David is our writer and traveler, packing his life in a small bag ready to go at a moments notice.  His prized possessions are his journals and they are never far from his side.  Tony deals better with a life of structure.  Scheduled days of classes, dive practices and working in the research lab defines his life.  David lets his hair grow long, Tony keeps his short.  David's jeans are rolled up above his Jack Purcell's, Tony's are full length to his Sperry Topsiders.

Their gift to us is a unique view of life.  Two identical twin boys but yet so different and we  have loved watching them both grow into their own identities.

Will Davis

Will Davis was introduced to me through Bert Woodard.  Both are board members of Joedance.  Bert followed Joe's treatments through mutual friends and Will never knew Joe. But they were a pair, as I always put it, "that fell out of the sky to support Joedance".

Will Davis is the developer of an 11th Floor movie making project, as a distraction and therapy for the patient and the content can be about anything.  This is not meant to be a documentary of what it is like to have pediatric cancer.  It is about bringing any story they want come to life.  What a wonderful project that Levine Children's Hospital has embraced and further supports their Family Centered Care philosophy.

Joe would have loved the opportunity to make a short film as patient at LCH.  A break from the endless hours of laying in bed without a goal.  The mindless days of watching TV and to leave something positive behind as a living memory.  This just is the coolest project and I am proud that Joedance is set to support it as a Presenting Sponsor.

Will thank you for your vision.

A Long Time Away

I have been away for a long time and my postings have been far and few between, but I have not forgotten you.  I have been busy (understatement) with Joedance.  My time is filled with meeting new people, securing sponsors and the general getting out there to spread the word.  And it has been exciting, draining, overwhelming, humbling and stressful.  None of which are negatives.

I once said in a conversation that I felt those who said we had something special was because they felt sorry for us.  But then came the support from people who never knew Joe, and then came the money from those who never heard of Joedance and then we started getting likes on the Facebook page from people we don't know.  A friend of a friend wants to help.  A person who knows someone who wants to enter their film contacts us. And on it goes.

This is the best way I know to honor Joe and definitely the most rewarding endeavor I have ever done in my life.  Thank you all for your support.