Sunday, February 3, 2013

Rush

My emotions are all over the place.

Cole has been granted a wish from Make A Wish!  Truly, it has been a long journey.

I first applied for Make A Wish when we lived in Utah.  Things were crazy, but my dear friend inspired me.  Her daughter passed away just weeks before they got the news that she could be a Wish Kid.  She told me that she would give anything to take that special trip with her daughter; and I was introduced to Give Kids The World Village.

I had been immersed in the special needs world for a little bit, but this was the first I had heard of the Village.  She told me more about it and I looked it up online when I got home that night.  Her story reminded me that life is fragile, and Cole had just turned the right age for applying, so I filled out the application online.  Give Kids The World Village was so magical.  I wanted to take Cole there.  It was a place where no one is different, and dreams come true.  After a couple of weeks without hearing anything, I called the office.  I was told that they were waiting on paperwork from Cole's doctor.  I never heard back.

We moved shortly afterwards and it was one of the last things from my mind.  I was so busy trying to get everything else into order.  However, when requesting Cole's medical records to take with me to Miami, I found amongst the papers the response from the doctor.  Due to being uneducated about Dravet Syndrome, he personally took away the chance for Cole to receive a wish.  I was livid.  However, I calmed down and realized that everything happens for a reason and it probably was not the best time to travel with Cole any way.  He was so sensitive to outside stimulation at the time and most likely would not have been able to fully appreciate and enjoy a trip.  Hindsight truly is 20/20.  I tucked away the thought of re-applying in our new state, since the chapter that grants the wish is based on where the child lives.

Fast forward.  Time passed, we got Slugger, changed jobs three times, got used to school, etc. etc.  Life was constant chaos.  By this time we have made plenty of friends who have received wishes and a lot of them, from all over the world, go to the Village.  December 2012, the darkest of times, rolled around and I remembered my sweet friend.  Her desire to just have those few days of happiness completely dedicated to having a good time and spending time with her family.  I felt it was time to apply.

My doctor was texting me every day at this point.  I gave her a heads up that she was going to be contacted.  Then crazy stuff started happening.

She spent over an hour on the phone with the foundation.  She filled out tons of paperwork.  Then more paperwork.  SHE made the decision and told the foundation that haste was necessary.  Sometimes it can take up to 18 months to grant a wish.  I didn't mention anything to her about going right away.  SHE asked for rush status.  This is where a wish can be granted within 24 hours if necessary.

When Make A Wish called me and told me that Cole had been granted a wish, and had been placed on rush status...it was delightful and terrifying all at the same time.  Someone who didn't even know us, agreed that things were so bad that there was to be no delay.  I knew that he totally qualified for a wish, and had plenty of friends who had children with the same diagnosis who also got granted wishes.  Everything from going to Justin Beiber concerts, building therapy rooms in their house, meeting The Cake Boss, getting a special expensive sport court in their back yard-lots of wishes, lots of happy memories.  I knew that a wish was possible, but rush status is for kids for whom death is imminent.  Right?  Once again I had to face reality that things truly are harrowing around here.  However, light entered and gratitude overwhelmed me.  Make A Wish has made it possible for our dreams to come true.  For Cole's dreams to come true.

The process has been so smooth and our wish granters are awesome.  One is a big burly guy who has been a volunteer for 10 years.  He said he has only cried once before.  When he read Cole's application, he cried for the second time.

Give Kids The World Village was started when a little girl, Amy, died before her wish to go to Disney World was granted.  The founder, Henry, was actually a POW in Auschwitz and other concentration camps during the Holocaust.  His story of survival is inspiring.  He lost everything, thought he was going to die, but beat the odds.  He also ended up finding his sister who was sent to another camp.  When he started the Village, it was because he knew what it was like to not know if you are going to wake up in the morning.  He wanted to give hope.  Even if it was just for a week.  More than 80% of Make A Wish, Wish Kids, actually survive to adulthood.  Something sparks inside of them and they fight even harder than before. Some sadly, like our beloved Charlotte, do not make it.  Some of them don't even get to experience their wish.  But GKTW is a place of magic, hope and peace.  A resort that is totally dedicated to granting wishes for kids.  We are so honored to become a part of this special family.  The countdown has begun and I have been preparing Cole a little bit every day.  From watching "Shampoo" on the Live Shamu Cam on the internet, to talking about Mickey.  This little boy deserves everything.  Make A Wish is helping us to make it happen.  A whole week dedicated to doing whatever he wants.  No doctors, no therapy, just fun.

Watch this video and be inspired, like I am.  Even though I am having a hard time with Cole's suffering, I see his smile and hear his laugh every day.  I can't wait to hear the constant barrage of giggles when we go on our wish trip.  Thank you, Make A Wish of Mid-Atlantic.  "A Dream Is A Wish Your Heart Makes" and it is our dream to just be together and watch Cole have the time of his life.



4 comments:

  1. Cole will just love getting his wish granted! :)

    (I want to be more happy for him, but like you I am conflicted. I wish the situation wasn't as dire. Plus, I am FURIOUS at the doctor who prevented Cole's wish in UT. GRRR!!!)

    XOXO

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  2. Can't wait to hear what he wants to do! :)

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  3. :) I can't wait to hear more about your wish and when it's happening! Make a Wish still brings a lump to my throat and makes me sad but I'm hoping your story will turn that around for me!

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  4. So excited for you guys. Keep us posted!

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