Thursday, August 15, 2013

When You Wish Upon A Star

When you wish upon a star
Makes no difference who you are
Anything your heart desires
Will come to you

If your heart is in your dream
No request is too extreme
When you wish upon a star
As dreamers do

When the idea was first presented to her, she quickly dismissed it.  She said she could not accept as there were others much more deserving than her.  Over time we kept the idea alive through the occasional reminder and dinner table discussion, but the door remained closed.  That was until one special night when magic happened and she accepted to wish upon a star.

For those who don’t know, the Make A Wish® Foundation is a wonderful organization that focuses on granting wishes to children with life-threatening medical conditions.  In a world that seems to be filled with negativity and constant challenge, this group moves forward with their mission day in and day out.  They do not do it for publicity or for the rich and famous.  As defined on their webpage they pursue their mission “to enrich the human experience with hope, strength and joy.”  Excellent!

Emma was first exposed to Make A Wish® through one of her doctors who thought she should consider the program before she hit the ripe old age of 18 (when the opportunity ceased).  He informed her that he had others go through the foundation and were blessed with a wonderful chance to meet someone they always wanted to meet, go somewhere they always wanted to go, or do something they always wanted to do.  Short of a few small limits, there were none.  Imagine it and it would become real.  Dream it and it would come true.  Despite this, Emma remained skeptical partially because she didn't feel deserving and partially because (I believe) she was a bit hesitant to accept such a gift which recognizes the challenge she fights so hard to balance.  She has chosen not to be known as that girl with Pompe, but rather someone with many talents and skills who also has this condition.

It was a December night in Princeton when all the pieces came together.  We were in town to celebrate the birthday of a very special girl who also has chosen to define herself by strength, character, and humor.  By luck, chance, or fate, our doctor was in attendance along with a couple senior leaders of the foundation.  He introduced us and told them all about Emma’s story and her hesitation to accept a wish.  Upon hearing the story they explained that she was indeed deserving because she has a chronic disease which impacts her life each and every day.  They urged her to reconsider, but do so quickly as her 18th birthday was fast approaching.

Upon returning from the event, Emma thought it over and agreed to move forward.  With less than a month to complete all the forms and get all the approvals, we sprang into action emailing the local and national representatives, reaching out to our doctor for documentation, and pushing Emma for a decision on that wish.  Suddenly it was as if she had discovered a genie’s bottle and just one wish to make.  It seems easy, but stop think about it.  If someone suddenly offered you one wish what would you say?

After much deliberation, the wish was set.  It was a trip to a place she always dreamed of going, but wasn’t sure she would ever make it …Paris.  She loved the culture, the fashion, the people, and especially the food.  She saw herself waking amongst the history and sitting at a street side cafe and watching the world walk by. It was magical!  Before we knew it, the wish was submitted and Donna and I were notified it was approved.  

We kept it a secret until Make A Wish® and a team from the company De Lage Landen (DLL) who raised funds for the wish surprised us with a  baking class at Strawberry Bakery, a wonderful French bakery near our home.  The team coordinated Emma's French Pastry Party as a way to announce the gift to Emma, have us learn a bit about baking French pastries, enjoy elcairs, croissants, elephant ears, cookies, and have a great time.  If you are in the Philly area and have a chance be sure to stop by and say hello to Jean Pierre at Strawberry Bakery.  He is an excellent baker and a kick! (Check out http://strawberry-bakery.com/)

A few days later, more Make A Wish® volunteers arrived at our door with plane tickets, hotel reservations, tour schedules and much more.  The whole trip was planned out from start to finish.  Before we knew it, the five of us packed our bags, loaded into a limo, and were on our way!  We landed in Paris the next morning and were greeted by a driver who whisked us off to Hotel Claude Bernard.  As soon we arrived, the kids raced to their room, opened the door to their balcony, took in the view, and were amazed.  In that first glance we knew Paris would be everything she wished it would be...simply amazing!

We wasted no time and began our adventure by walking to a local café for lunch.  Emma went right for the steak with pommes frites followed by Crème Brulee and the first of many cappuccinos.  The Make A Wish® team smartly planned tourist buses for us so we could see the city while limiting the amount of walking the girls had to do.  So, the next day we hit the tourist circuit visited Notre Dame, Champs Elysses, the Arc de Triomphe, the Eiffel Tower, and the Louvre.  Our trip was finished with a fantastic midnight cruise on the Seine, taking in the Paris nightlife along the river, and seeing the Eiffel Tower shining like a beacon for all to see.  

Each day we would stop and find a new cafe and enjoy lunch and Emma’s third, fifth, and ninth cappuccino.  Each night we took a different dining adventure trying out a recommended restaurant here and guessing on another there.  The kids ate caviar, crepes, croissants, steaks, pastas, macaroons, escargot, duck, foie gras, chocolate mousse, more croissants, and a wee bit of wine.  As you can see, we did not starve and everyone stepped just a bit out of the comfort zone and into the lives of the locals.  It was lovely.

Along the way something unexpected happened.  Amongst a sea of people speaking all types of languages, the five of us bonded as a family.  We all knew summer would be ending soon and with that things would change.  Soon, Emma would be moving away to college, Maddie would start high school, and football would take over Carter's life. We found that more than just a girl’s dreams came true so did that of her parents'.  Surely Paris was her destination of choice, but it also turned out to be the ideal place for us to be together, talk together, laugh together, and join Emma on her twelfth, thirteenth, and sixteenth cappuccino. 

In the end, it was a very humbling and emotional experience for all of us.  Being exposed to the Make A Wish® and the DLL team reminded us once again that there are many wonderful people out there doing great work on behalf of those who need a helping hand.  To everyone we met and to those we didn't, we want to say thank you.  Thank you for a great trip with great memories, but most importantly, thank you for allowing a young lady the chance to make her Paris dream a reality.  Thank you for allowing her to stop, close her eyes, and believe that 

When you wish upon a star
Your dreams come true


Credit to: Disney, "When You Wish Upon A Star"

To learn more about the Make A Wish® Foundation, please visit their site at http://wish.org/.

Here's a few photos you might enjoy.


Emma's French Pastry Party


 Bon Voyage from the Make A Wish® and De Lage Landen teams


An excellent view of Notre Dame from the kids' room 


 Hello from the Louvre


Emma's 15th or was it 17th cappuccino?



A midnight cruise along the Seine  


Make A Wish!

Tuesday, August 6, 2013

Back in the U.S.S.R. - Maddie's Mission on Facebook!

Oh, flew in from Miami Beach B.O.A.C.
Didn't get to bed last night
On the way the paper bag was on my knee
Man I had a dreadful flight
I'm back in the U.S.S.R.
You don't know how lucky you are boy
Back in the U.S.S.R.

Been away so long I hardly knew the place
Gee it's good to be back home
Leave it till tomorrow to unpack my case
Honey disconnect the phone
I'm back in the U.S.S.R.
You don't know how lucky you are boy
Back in the U.S.
Back in the U.S.
Back in the U.S.S.R.


Writing a blog is an interesting experience because it is so interactive.  It is much different than writing a book where the reader has little opportunity to respond to the writer.  A blog offers the opportunity for the back and forth communication which makes the process so much more appealing to me.  In the early days we received tons of comments on each post because the emotion was high and each post was full of new information about a disease no one had heard about.  Over time, the comments naturally became less, but were still filled with witty comments and thoughts on the topic at hand.  That was until my friends in the former U.S.S.R. took notice.  

One of the cooler things about the Google blog site is the opportunity to review statistics.  The stats page outlines the number of pageviews, traffic sources, popular posts, and audience reach.  The Audience link outlines the pageviews by web brower, operating system, and my favorite - by country.  The page has a nice map highlighted with colors based on reach (see below).   

When we first started to post blogs we expected to see the views grow in the United States because of our family and friends.  Over time we were thrilled to see the occasional spotting in Europe and even Australia.  We knew some Pompe folks in these areas and hoped they were checking into our story and enjoying the journey.  During all this time the comments kept rolling in either from folks we knew or anonymous posters who sounded a lot like people we knew.  And then came the Russian invasion!

Once in a while I would notice strange comments like:

Very nice article. I certainly appreciate this site. Keep it up! Feel free to surf to my blog post ...

or 

Very nice article. I certainly appreciate this site. Keep it up! Feel free to surf to my blog post ...

At first, my twelve years of Catholic School told me to answer, "How nice!"  Then, once the volume of the comments increase dramatically, reality set in that the site was being hit by spammers.  After clicking every one of their bogus links (kidding), I turned off the comment option so nothing more could come in.  The only problem is, by doing so, we lost the opportunity to connect with our family and friends.  So, we set up a Facebook page and called it...surprise...Maddie's Mission.

On the Facebook page we add each new post plus information on Pompe, Muscular Dystrophy, etc.  However, the main goal is to give our family and friends a place to comment on our posts or leave messages for the girls.  If you are interested in checking it out and "Liking" it the address is https://www.facebook.com/pages/Maddies-Mission/343231419122252.      

If you have extra time, I can always send you links from my friends in Russia, Latvia, and the Ukraine, but I have a feeling you don't want those! 

Credit to: The Beatles, "Back in the U.S.S.R"


See someone you know?

Pageviews by Countries

Graph of most popular countries among blog viewers
EntryPageviews
United States
53239
Russia
870
Germany
447
Canada
417
Latvia
414
United Kingdom
280
Australia
253
France
169
Ukraine
124
Greece
68