Good Gracious

Has it really been months since I have signed on and blogged?  It seems I was  pulled into the Joedance vortex and now just surfacing.  So much has happened...so many wonderful things have happened.

We worked hard at Joedance and wrote a check to Levine Children's Hospital for $20,000 for rare pediatric cancer research.  We have sent Tony and David off to their third year in college.  Mike has changed jobs and is now running the 7th Street Public Market in Uptown Charlotte.  And I continue to work on Joedance.

But, in the quiet of the morning, I look over to my beside table and see the picture of Joe with his brothers on the McCallie campus. I still have that  pain in my gut.  That pain begging me to stay under the covers.  Not to face the day.  Being quiet and private would be the easier way to go.

It is not the path I have chosen nor the path I can ignore.  So I push that pain away and get on with trying to make a difference.  One tiny step at a time.

Joedance Film Selections

Today we announced the film selections from local Charlotte filmmakers for Joedance 2013.  A long way from the first Joedance when we showed the films on the wall of a town home.  Our first  film ever  shown was The Big Night.  Not an original film with a Charlotte connection.

Today those who had written and directed original films were there as we announced the Joedance 2013 film selections.  Some have been doing this for a while, and some are just starting out. Either way we are thrilled they submitted their films, we are proud to support local Charlotte films and we will follow the careers of these promising directors.

The Time Has Come

The time came naturally to deal with Joe's clothes. We were staring at them and they were staring back at us.  So we packed them up and sent them to his favorite place to shop, The Salvation Army.  And the remainder of what was important to him is in a cedar chest in our room.

It was time and it is time to move ahead.  Joe would have wanted that without all the trappings of his clothes.  His prized possessions are secured in a safe place that we can visit and remember.

Joe, Love you lots and miss you tons,
Mom

McCallie Luncheon

It happens every year.  Same place, same time and many times the same people.  That would make sense since it is the McCallie Alumni Luncheon.  Mike and I have attended this lunch for several years, but this time was special.  Matt Mildenberg was asked to speak.  He was the recipient of the McCallie Alumni Scholarship and he talked about what he did at McCallie, Penn and what he is doing now.

At the end he talked about giving back.  He told the story of his band and how they only knew "Let It Be" as their encore for a play off to win the Battle of the Bands. It was the only encore song they knew and they were up against a really talented guitar player.  As Matt's band began playing "Let It Be".  Joe  was swaying in his seat,  then he stood up and was swaying and then he was  doing the fake lighter sway and then moved on to having the whole place singing "Let it Be" at the end.  He said Joe was the audience that won his band's title in the Battle of the Bands.  And Matt made sure to tell this happened before Joe was a "celebrity" and was only known for having great facial hair.

In the end Matt asked for the support of the Charlotte  McCallie Alumni for Joedance.  Because if you have a friend that helps you out by doing the fake lighter sway serving up a Battle of the Bands title you remember that for a long time.

Peace

Peace.  It was the topic of Rev. Ollie's sermon and it spoke to my heart. I am sure he did not know how timely it was or how relevant it was to my life. And I know growing up in a family of ministers their hope was to reach maybe a handful of people with their sermons.

But peace is what I strive for after Joe's death.  The drama that surrounds my family, the secrets we keep in order to keep order, the unspoken words, the suffering we endure alone could be so alleviated if we lived our lives through peace.  To those that suffer peace could be achieved by just picking up the phone and asking the simple question of how are you.  Peace is to a friend or family a simple gesture of a squeeze of a hand, a touch on their arm, a straight on gaze into their eyes.  Giving them the out and the reassurance that you know how much it hurts.  Peace is the nod of quiet reflection and loud shouts from the roof tops.

Peace is giving to others every day.  

Clutter

There is clutter in my life. In my house filling every room.  I feel the need to clean out.  But every time I reach for a shirt of Joe's, or a sketch of David's or Tony's chemistry notes I am afraid of losing the past. And I know that if anything is not tossed out without approval I am throwing away the past.

We as a family tend to take hold and keep things down to every scrap of paper to remember our lives.  I wonder is it time to give up Joe's clothes?  Tony and I cleaned out his notebooks from Freshman year at McCallie to the first year at Penn.  It was painful to open the notebooks and see his precise hand writing.  I wanted to keep it, but it was time to let go.

I think of what was important to him in the end.  His wallet, a pen knife handed down to him from a Grandfather he never met, his Campbell Award, the coins Mike brought back from the Far East, Jonny's Air Force Wings and his Saint Christopher's Medal.  All could be held in the palm of your hand.

Yes, it is time to relieve the clutter in my life.  But I am afraid by losing the clutter I will lose what my family was.

FINANCIAL HEADACHES!!!

There I was today working through the renewal of our Charitable Solicitation and the headaches of filling out Government forms took over my life.  Eight hours later I was still reading the instructions.  Several calls to the Secretary of State Office in North Carolina I received the same answers "read our step by step instruction sheet" and you should have no problem. Here's the problem is there are required questions and then there are optional but strongly suggested questions, so should I leave out the strongly suggested answers.  Will I be denied for leaving them out?  And all of it numbers...not my strong suit.  Digging through receipts, bank statements and spread sheets I finally gave up and had a manicure.  It will still be on my desk in the morning and the Secretary of the State office will be open all day.  And I will preserver, I will  conquer the Charitable Solicitation Form.

Or I will call my accountant.

Susan

There was Susan at our front porch, impeccably dressed, with the up most dignity and grace.  And she had just admitted her husband of forty-two years to an Alzheimer's facility just two days ago.   She said I lost him when he had cancer and I have lost him again two days ago.

I know what that means.  There are stages of losing those you love.  We went through it with Joe.  We lost him when he was diagnosed, we lost him again when he did not respond to treatment and the last loss was when surgery was not an option.

Susan has lost a life she knew, a husband she adored but has the blessing  that her children surround her with love and help every day. I keep Susan in my thoughts every day and this family that is enduring the loss of a family member.

Boston

My heart, my thoughts and my prayers went out to every victim at the Boston Marathon.  I remember a friend of ours ran the Boston Marathon in memory of Joe. The Boston Marathon attracts elite athletes but it is always about the "plodders" that come in at the four hour mark with families waiting to cheer them on.

Today I keep a family in my thoughts and prayers that have been affected by the bombings.  Michael and Nicole are young with many years ahead of them.  And with one swift moment their lives have changed.  Michael has been discharged, Nicole is facing more surgeries.

And today I think of them and wish the best outcome.  

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.

A Switch UP

I was going to update everyone on Joedance with this blog but I am taking a different direction.  Just before writing this blog I saw a post on the McCallie Facebook page about Jordan Thomas, a boy Joe went to school with at McCallie.  Jordan had a horrible boating accident while on vacation with his family and the result was losing both of his legs from the calf down. He started a foundation to help fund prothesis for others in need, he was nominated as a CNN Hero of the Year and he now has a video on the Golf Channel.

But what you may not know is that one of the last emails Joe read was from Jordan Thomas, and one of the last phone calls our family received was from Jordan Thomas.  I remember his words. "They call me a hero but Joe has always been my hero and I think of him every day as I continue my work."

They are both heroes. One that rose from a tragedy and one that taught us to live while dying.

Ice Covered

Charlotte is covered in ice. David leaves in the morning for Scotland and we will be on our way to Charleston afterwards to throw some rosemary in the bay and take a swig of Jameson in Joe's memory.   We will meet up with Joe's friends for dinner and memories.

I keep my fingers crossed our plans will not be derailed by Mother Nature. This trip is so important to me to visit where Joe's ashes were spread with his friends and his brothers.

And The Joedance Website Is Live

Our Website is live and you can find us at www.joedance.org.  I hope you visit the site and learn more about Joedance and our support of Phase I and Phase II Clinical Trials and Research at Levine Children's Hospital in Charlotte, North Carolina.

This is an exciting time for Joedance Film Festival and I want to thank each and every one of you that have supported us since the very first festival and those of you who have become recent supporters.

I write these words in every letter, to every sponsor and to every donor and to this day is hard to write.  "Joedance was founded in memory of our oldest son Joe, and Tony and David's brother, who passed away at the age of 20 from Osteosarcoma".  But today these words will not bring tears to my eyes, they will guide me to a greater cause and give back the control I did not have when Joe was dying.

Our family is so appreciative of your support.

Joedance Website

Twenty plus emails today, thousands of hours writing, many hours of research, combing through photos and there it is on our website.  It is ready to be launched tomorrow.  When we started Joedance we always thought about keeping it small and local.  But we have the best of two worlds; all of you in the cyber world and all of our neighbors.

I never thought we would get to this place of Facebook, Websites, sponsors, donor packages and original films.  But here we are and here I am making sure that the spirit of Joedance does not get lost.

It is about a boy who loved films and fought against all odds to be just a boy.

Making It Through The Week

I made it through the week.  It was not pretty, it was tearful and I was drained.  But when the messages, the cards and the phone calls starting coming I knew I was not alone.  Not in my grief or those who still remember Joe.

It so hard for me to believe that is has been three years.  It seems like yesterday, and yet a lifetime ago, that we transformed our home in to a mini hospital.  It seems like yesterday I drove Joe to McCallie for his last chapel talk with twelve oxygen tanks in the back seat with Mike and my parents following behind.

It  seems like a century ago he was diagnosed.  I miss him, my family misses him and his friends miss him. Thank you for helping our family make it through his difficult week. We are fortunate to have you by our side.

The End

Last night before Tony headed back to school we sat in our living room and talked about the end.  How we were amazed that three years have passed.  How Tony crashed and burned at a dive meet last year on the anniversary of Joe's death.  How hard it is for the boys to tell their new friends about Joe. We went down memory lane telling funny stories of Joe and the boys growing up.  We laughed but then I cried when the house was quiet and was left alone with my thoughts.  

I don't sleep much during this time and find it difficult to focus.  I have learned to "clear the decks" and not take too much on in case the chink in my amour will fail.  Joe would not have liked that I do this, he never liked to see me cry or be sad even at the end.  But after all the brave faces I have put on during his battle with cancer I will be truthful.  I miss Joe everyday and am sad how his absence has changed our family.  

Happy New Year

One year ago I posted a resolution for a more peaceful, less tearful 2012.  Well, I made it half way and I think I deserve a pat on the back for that.  I have made peace with Joe being gone but I have had to talk about him more this year to people who never knew him.  I had to put myself out there to promote Joedance and the stories come up.  And it is tough.  I consider a good meeting is without tears or choking up.

I have met with other families that have lost their children to rare cancers.  We cry, we hug, we are all raising money for rare cancers.  We will never be as big as the "Pink" but we are all doing good on a smaller scale.

Yes, I have accepted losing Joe but I have not made peace with those who still suffer with rare pediatric  cancers.  Hopefully in memory of Joe I will go forward with grace to help others. And that is my New Year's resolution.