"Sometimes grace manifests itself as synchronicity -- its energy brings together people or events in a soothing, helpful, or dramatic way when you most need it and least expect it. At other times grace is the energy that suddenly illuminates us with understanding, allowing us to see what we had not been able to grasp before. Grace can also lift us into an altered state of consciousness, suffused by an unfamiliar energy -- an indescribable combination of love, hope and fearlessness."
Sunday, August 2, 2015
Coffee, Shakespeare and Girls -- What Would You Do With 10 Years?
August 2, 2005 Patrick had just turned six...
was ready to enter kindergarten and was given sweet relief.
All treatment for Acute Lymphoblastic Leukemia was complete.
No more chemo every day.
No more spinal taps to check to see if the spinal fluid was clear...
and to add a little chemo just to make sure.
No more constant blood counts.
No more agonizing over numbers of neutrophils, lymphocytes, hemoglobin.
It was a strange thing to be given such a date...and trust me, when we were given that date in
June of 2002, it felt like a weird form of torture.
We got good at finding parks where no else played and a little boy without many white blood cells could enjoy the outdoors without being near anybody else.
We visited the beach a lot.
We went to preschool when we could...and slowly, irrevocably, the time passed.
That little boy got his chance at a cancer-free life.
August 2, 2002 became known as Chillin' With Chalk.
We were uneasy about celebrating too big.
Didn't want to jinx anything.
Couldn't dare to dream too big.
So we invited friends and family to Central Park in the middle of our town and we asked them to draw any chalk picture that celebrated this great day.
We collected money for the chalk -- 50 cents a piece - and donated the money to a dinner out for the doctors and nurses and many others who were on our three year journey with us.
Watching these colorful messages of love and hope decorate our park was one of my favorite moments of that terrible journey.
It was love out loud.
And then August 3rd rolled by...and school supplies needed to be purchased...and laundry folded...and dinners and lunches and breakfasts made...and the days ticked by.
Every August 2nd, I would hold my breath and wait for the yearly blood counts and pray.
2006 - First grade and a new baby sister
2007 - Second grade - Holy Communion
2008 - Third grade -- the beginning of trying to ride a bike and being in Miss Mindy's Musicals
2009 - Fourth grade - First Reconciliation
2010 - Fifth grade and the love of New York City begins along with Broadway - Steve, the paraeducator who is all-pro, joins your bro squad
2011 - Sixth grade and a sleep away camp and we get serious about learning to swim -
Jack leaves for college
2012 - Seventh grade and bike riding gets real - Sarah becomes part of your dream team at school and well, maybe our life too
2013 - Eighth grade and the love of Shakespeare takes flight -
Mary Kate leaves for college - Confirmation and official cell phone use begins
2014 - Ninth grade: new school, old friends become new again
2015 -- bing, bing, bing
An entire decade of August 2nds...clear and free of leukemia...10 years of good health.
What has Patrick done with those precious ten years?
1) Read a lot of books.
2) Tried all sorts of new foods.
3) Visited some amazing new places and revisited old favorites.
4) Sunk deep into Shakespeare and musicals and created a stunning assortment of cast lists
5) Got involved in Special Olympics basketball and soccer - swimming on a typical team as well
8) Dreamt about proms and dates and girls and plotted way too many times on who could be his girl
9) Belly laughed at way too many fart jokes courtesy of his dad
10) Grew and grew and grew
He enjoyed the simplest of pleasures and relished them as gifts.
Cheering whenever someone in our family came home...or had a birthday...or did something of note.
He hugged you tight.
He asked how you were doing.
He looked forward to the releases of movies or shows with a calendar and a pen,
marking the days so carefully.
In short, he got the chance to be a kid...growing into a teen.
There are moments when it hits me...that we've made it through...and although they sneak up on me,
I still know why those tears come so easily.
It happened a few nights ago watching the play Matilda, standing up clapping in an ovation, a giant theater filled with the excitement of great music wrapping up thoughts and emotions from a great story that unified us all...and I tried to somehow send out a universal thank you note within each clap...to all of these healthy people in this theater beside me, able to stand and clap and enjoy a show...to all of the actors, all of the musicians, all of the light guys...everyone...how lucky we are.
Tonight, Patrick had his first cup of coffee.
He hung out with his favorite people.
He tried new things and went on an adventure.
He found time for music and dreaming.
It's been a beautiful 10 years.
10 years of mundane, trivial, annoying,
Thank you doctors and nurses and researchers.
Thank you, universe.
Chillin' With Chalk 2 is set for August 22, 2015.
Meet us in Central Park...or your central park...
10 years later we have Instagram, and Facebook and Twitter and not to mention
meet us anywhere, in any way, and share a chalk drawing to celebrate life and love and color.
Can't wait to get messy...
and fill the world with color.
For one day.