A Bald Princess? It's about time...

 

Nine days.  In nine days, I am going to shave my head, and God is telling me to write a blog about it.  I’m not sure what I’m going to call this Blog – the Bald Princess Blog?  It’s not that important.  What is important is that I share my story in the hope that it will help inspire others to make a difference in this world.  To feel compassion.   And to see past appearances and understand that we have a Light inside us that can be a beacon for change.  So why start now, instead of waiting 10 days until after it’s done?  Because this journey has already begun, and I realize that so much of this story has already been written and needs to be told.  There is so much to say, in fact, that I don’t know where to begin. 

When I was born, I was bald…

Just kidding.  I won’t go back that far.

On January 24th, 2014, I was struck with an idea.  I remember the exact moment in time because for me, it was just THAT big – literally feeling like the voice of God was speaking directly to my heart.  I was driving when this happened and almost had to pull over.  Most of my greatest ideas come when I am driving alone in silence – which is rare since I love to listen to Audiobooks.  (Oh, and who am I kidding?  Anyone that knows me knows I blast Duran Duran and sing along as loudly as I can!)  At that time in my life, Joy to the Kids was starting to form… I’m not even sure that I had the name for the charity yet, but I had been volunteering at the hospital as a Princess and I was going through a lot of angst and worry about the fact that everyone I know seemed to be telling me that I would never, ever get the copyrights from Disney to perform their material.   I felt that my idea to start a charity to perform as a Princess was doomed.  Then it hit me, making a left turn, feeling the bright rays of sunlight bounce off the dashboard on one of the sunniest afternoons that January had ever seen: “Write a new story, about a Bald Princess, and create a whole new character.”  What?  A Bald Princess?  Has that been done?  WOW!  I remember thinking. 

But there was a problem – I didn’t know the first thing about writing a book, which was what I took this lightning bolt inspiration to mean… very literally, I needed to write a book.  But I knew someone who did, my dear friend, Tricia.  So sent Tricia an email the next day and asked her to co-author this book with me.  Tricia embraced the idea with her whole heart and our collaboration began.   For over a year, we sent drafts back and forth to one another, sometimes running with an idea just to throw it away in the end, and other times we are so in sync with our story that not even I can tell where one person’s writing ends and the next begins.  And would you believe that throughout the whole process, it never even crossed my mind to shave my head?

Today, our book is finished… well, is a book ever finished?  It took over a year, but we have finally settled on a manuscript that we feel comfortable sending out to literary agents and we are in the process of doing just that.  It’s a tedious process, submitting a manuscript to agents just to get your foot in the door with a publishing company, which may or may not even happen.  One becomes so vulnerable, sharing a precious work of art, a piece of their heart intertwined with their creation.   As Tricia wrote to me just yesterday, “I keep reminding myself that J.K. Rowling got REJECTED multiple times. How'd you like to be one of the agents that rejected her????” 

But I digress.  This blog isn’t about our book, although I am very proud of it.  It’s about something else, and the book was only the beginning.  Whether or not the book gets published, it plays a very important role in my personal story, because in writing this book, the Bald Princess comes alive, and I truly define who this character is… or rather WHAT she represents:  a LIGHT.  The Bald Princess is NOT about cancer (it really isn’t),  but about a girl that has a Light of Joy that shines so brightly within her that she has the power to heal.  Hmmmm…. I bet I know what you are thinking right now… Rachel is describing herself when she visits the children.  BUT NO – I am describing the CHILDREN when I visit the children.  And this is where my decision to shave my head comes to LIGHT (pun intended).

In July of 2014, I met Avery for the first time.  Oh, sweet, precious Avery.  She was so small in that hospital bed, all hooked up to machines.  I was actually dressed as Batgirl that very first time, and I remember what struck me the most was how calm and put together her mother was, just grabbing the tube to suction the airway when her little girl coughed, a move that had become so natural to her (and shouldn’t be natural to anyone, especially a mother).  And then there was Avery… despite being in obvious pain, she still had a spark.  Something grabbed me about that spark and stayed with me.

The second visit was life-changing for me.  I was dressed as the Little Mermaid, in my great big red wig, and I spent a long time singing to Avery.  She was all big-eyed and full of wonder. She loved the red hair and tried to grab it (ironic since I am shaving my head because of Avery).  She was unable to speak or phonate because of her trachea tube, but her Light spoke for her.  It filled me with such Joy.  That spark inside of her that I mentioned before became a bright Light that burned and caught fire in my heart, and together, I feel like we just glowed as ONE.   And that’s when it dawned on me that we are, in fact, ONE.  We are in this together.   We are ALL CONNECTED.  I realized that I was put on this Earth for a mission to help others see this connection, and Avery was going to be my teacher… one of many.  

Seeing Avery became the highLIGHT (pun intended again) of my weekly visits to the hospital.  I couldn’t wait to see her brave face, enduring so much that I couldn’t even fathom.  She had this great smile that was somewhere between a smirk and a laugh, making me want to burst with Joy.  Of course, there were days when she didn’t want to smile at all, but she always managed to give me a look that told me the spark was still in there, despite all of her pain.

Her mother and I grew close, and one day she shared with me her own story.  Avery had a brain tumor called AT/RT, a cancer so rare that they were going to attempt a treatment that had hardly ever been done before – a form of chemotherapy that was so intense that no one, not even her own mother, was to touch her skin without gloves for fear that the chemicals would burn.  Both Avery and her mother were supposed to bathe every 4 hours to wash away the chemicals and prevent long term damage.  Imagine, if these are the precautions that were necessary to protect the surface, what was going on inside?  And why, why would anyone go through this? 

Because there are no other alternatives.  NONE.  It was this, or do nothing.

And THAT is NOT ACCEPTABLE.  I refuse to believe that in this world today, with all the wealth and technology and brilliant minds inventing new ideas every day, that there is no other alternative. 

Avery died on April 7th, 2015, but cancer did not kill Avery.   Complications from her chemotherapy treatment did.  We MUST find a way to find an alternative treatment and ultimately CURE this disease. 

Avery’s Light helped shape the essence of the character in our book, and now I feel that by shaving my head and quite literally becoming The Bald Princess, I can be a voice for Avery, and for the millions of children and their families that are afflicted by pediatric cancer.

So I guess this first blog entry is about LIGHT.  Bringing to the LIGHT a desperate need for change, and the importance of raising funds for pediatric cancer research.  And a different kind of LIGHT, the LIGHT that lives within each and every one of us, connecting us all to one another, no matter what we look like, what language we speak, who we choose to love, where we live, the color of our skin, and yes… whether or not we have hair.  We are all in this together, and it’s about time to give a damn and make a difference. 

Let your LIGHT shine, my friends.

 

-Rachel Gray, soon to be “The Bald Princess of Light”

 

DONATE NOW TO THIS ST. BALDRICK'S SHAVE EVENT AND MAKE A DIFFERENCE!

https://www.stbaldricks.org/participants/mypage/804202/2015

 

Please look at this beautiful photography essay about Avery:

http://brittanigattisphotography.com/the-day-in-the-life-of-pediatric-cancer/

 

 “I will never utter the words ‘lost her battle with cancer’ in relation to Avery.  That puts onus on her, as if she had only fought a little harder, this may not have happened.  The onus is not on her, but on us as a society for not giving her what she needed to win her fight.  We don’t do enough for our children with cancer.  Less than 4% of all federal funding is dedicated to researching cures for children’s cancer.  This is absurd and not one of us should stand for.”                    ---Maureen Linke, Avery’s Godmother

 

“Be the change you want to see in the world."                 ---Mahatma Ghandi

 

 

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