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Zoë's Second Home

8/22/2012

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Since March earlier this year, I have not been to Boston.  Not since, Laura, Zoë and I were escorted by the Massachusetts State Police home. 

Yesterday, I decided impulsively to go to Fenway Park to watch the Red Sox play the Angels.  Before I entered Fenway Park, I decided to stop off at the Children's Hospital.  Most of the 90 minute drive into Boston, I contemplated how I would feel stepping into the place that took such good care of Zoë.  Would I cry at the sites and sounds?  Would I want to retreat in fear of embarrassing myself?

Honestly, it wasn't as bad as I anticipated.  It felt good to return to Children's Hospital.  Reaffirming, even.  When I first walked into the lobby, I noticed the crazy engineering project with the balls and gears and levers.  I stood in the middle of it all watching how the contraption keeps moving everything along as it did months ago when I first discovered it with Zoë. 

I thought I might l loose my cool and start crying over the loss of my daughter again, but really, I kind of felt like she was there with me, watching the cool machine move the balls around and around, like we did for many hours before, bemused by its puzzle, expecting a ball to miss its cue and fall of its trajectory. 

Then I decided to have some Thai Coconut Curry soup from Au Bon Pain, like I used to.  I sat in the lobby next to a few Dr. Seuss paintings that were part of an exhibit while Zoë was a patient.  I ate my food quietly and listened to the sounds of the little balls banging and bouncing around their obstacles and the noises from children and mainly adults playing on the musical stairs. 

I was unassuming.  Not at all standing out like some of the children there being pushed around in wheelchairs by their parents.  All I could think about were those children and the battle they were fighting.  How easy it is for anyone of us to complain about something stupid and unimportant, when some people actually have the right to complain, but choose not to, seeing how useless it is.

Of course, if you have been following my blog, I mentioned months ago, that I played Miss Pac Man and broke the record for the highest score.  I wanted to place the letters ZFY in the first place slot, but it would not allow me to.  Before I left the hospital to walk over to  Fenway Park, I checked to see if that score still stood.  Someone really killed my high score, nearly doubling what I spent hours to achieve.  Records are meant to be broken.  Zoë's letters are permanent in my heart and purpose in life.  I hope another child can live knowing that that high score was achieved for them.
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The Journey is the Destination

8/20/2012

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Life has lead me to many places.  Some good, and others bad.  I've been dragged by the current of peer pressure and I've also made my own rules.

Today, I am going to return my return my passport in order to have a new one replaced.  I've traveled all over the world.  I've been to more than 50 countries and islands.  I've stayed in fancy 5 star hotels. I've slept outside. I've been woken up by local wildlife tramping through my camp.  I've swam with sharks and I've jumped out of planes.

I was looking through my passport yesterday at all the stamps and stickers and visas.  I've accomplished a lot in my 35 years of life.  Yet I have not reached my destination.  I have a long way to go and each day I am going to step closer to what will eventually define my life.

Before Zoë was born, she visited Canada with Laura and me on our honeymoon.  It seems fitting that we should plan our next big vacation with our neighbors to the north.  That is why I am having my passport replaced.  It expired last month.  I will miss the sticker and stamp from my Chinese visa to study in Beijing.  There is also the business visa I have from my time spent in South Africa.  Those are great memories.  But the exciting ones are yet to be formed.

Two days ago, we hosted the First Annual Zoë Festival.  What a blast.  Everyone had a great time.  The music rocked.  The food was delicious.  The entertainment...well, they were definitely entertaining!  We raised a lot of money to battle MRT and made a bunch of new friends.  I cannot even begin to thank everyone who attended or volunteered to help us set up or prepare for Zoë Fest.  It was an amazing night.  I hope we can do it again and again for at least the next 50 years of my life!

The next step in my journey will take place again in Rhode Island.  Thanks to the Feinstein Foundation I am going to begin my classes in nonprofit studies in less than ten days.  I can't wait to begin. Who knows where this turn in my journey will take me.  It is exciting to be where I am doing everything I am working for.  Thank you to everyone who supports me with donations and kind words of encouragement.  I am so grateful that you all are behind me helping me with each step of my journey. 

Battle On!


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Amica Game Ball Signed by Tom Heinsohn

8/9/2012

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Laura and I were extremely happy to receive this Amica Game Ball signed by Tom Heinsohn of the Boston Celtics franchise.  A very special thank you to Laura Meade Kirk at Amica HQ in Lincoln, RI for facilitating this donation to the Zoë Faye Foundation.  It will make a great addition to our Live and Silent Auction in the summer of 2013. 

I also want to take another moment to thank all of the donors and volunteers who are going to make Zoë Fest on August 18th, 2012 a blast.  I am thoroughly excited for all the delicious food that Anthony at Tony's Seafood in Seekonk, MA is preparing and cooking for the event.  There's going to be ziti with a meatball and sausage sauce, a vegan tomato sauce for all of our vegetarian friends, chicken parm, eggplant parm, soda, seltzer, and coffee.  The coffee is provided by a dear friend of mine, Nadav Mer,  and his coffee roasting business, Tree City Coffee Roasters, out of Gainsville, Florida.  Nadav and I went to high school together in Lincoln, RI and was eager to help us make Zoë Fest a big success.  The three things I can count on for sure at Zoë Fest is delicious food, good coffee, and an epic music festival.  So far, there are 7, possibly 8, bands going on stage for an all out battle of the bands vs pediatric cancer. 

This has become my life, and I am so proud of myself and Laura, because of the positive work we have begun to undertake.  Zoë Fest is the first step towards accomplishing something much larger than ourselves.  If you would like to make a donation towards the foundation, or a raffle item to benefit ZFF and one of our guests at Zoë Fest, please email me at Zeppo.cancersucks@gmail.com.  Tickets to Zoë Fest are available though this website and at the doors.  Lets do this for Zoë and the children diagnosed with MRT.  Let's battle on!

http://detaileddivaevents.wix.com/zoefest

Thanks for reading my blog! 

Sincerely,

Zeppo

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    Zeppo Young finds joy in the simple things in life, such as digging around in his garden, and fermenting vegetables. 


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The Zoë Faye Foundation's mission is to provide support and assistance to children diagnosed with Malignant Rhabdoid Tumors, Atypical Teratoid Rhabdoid Tumors, and Non-CNS Extrarenal Rhabdoid Tumors, and their families; provide pathways to information, financial relief, and raise awareness for rare pediatric cancers, and funds for researchers who focus on Rhabdoid Tumors and related cancers with the hopes of achieving a cure.