Tuesday, October 8, 2013

What A Wonderful World


I see trees of green, red roses too
I see them bloom for me and you
And I think to myself, what a wonderful world

I see skies so blue and clouds of white
The bright blessed day, the dark sacred night
And I think to myself, what a wonderful world

In September 2010 I posted an update titled Heroes where I highlighted Emma's recognition of some amazing people she met early in her Pompe adventure. (See maddiesmission.blogspot.com/heroesSince that time we have met many others from doctors, to researchers, and fellow Pompe travelers.  I could probably write post after post about their importance, but today I will focus on just one.  Today I'd like to mention someone who continues to use his skills to give a voice to those who are sometimes forgotten.  By doing so, he has left a lasting impression on me.  And, by doing so, he has reminded the Crowleys that despite hardship and challenge, we truly live in a wonderful world.  

If you live in the Philadelphia area, you may already know Steve Highsmith as that newscaster on the local NBC affiliate PHL17 or as the guy who has hosted the Mummers Parade for over 20 years.  For those outside the area, I assure you he is that and so much more.  He is heavily involved in the community through all types of charity activities and has received high honors from his peers.  It is his passion for children with muscular dystrophy that brought us together and keeps us crossing paths.  That passion has driven him to donate his time at various events, be a regular at MDA summer camp, and lead the live showing of the Muscular Dystrophy Association (MDA) Annual fundraiser.    

We were first introduced to Steve three years ago when we were invited down to the TV station to meet some sponsors, other families, and TV personalities.  At our introduction we were struck by this man who spoke so strongly about the mission of the MDA and what it meant for the Philadelphia area.  He made us all welcome and was nice enough to allow Maddie backstage while they filmed.  Not surprisingly, Maddie wasted no time finding her way on TV with some other kids, answering questions and laughing away.  

We ran into Steve a few more times at different MDA events and exchanged emails. Last year Donna and Maddie were invited down to the station for his one hour public affairs show to speak about their experiences with Pompe.  Last summer Maddie and Emma were interviewed at MDA camp and a few months ago they were called again. This time Donna and the girls shared the stage with their good friends Liam and his mother Susan to discuss different perspectives on life with muscular dystrophy.  As expected, through it all, Steve kept it positive, supportive and inspiring.

Rather than share all the details from the interview, Steve was kind enough to let me share the 30 minute video here.  When you have some time to set aside I hope you check it out.  I must admit it is still a bit strange to watch my family on TV especially when they are sharing their challenge with such hope, laughter, and determination.  I hope you find the interview interesting, but most of all I hope you realize that while Steve could easily spend his time focusing on more popular subjects, he chooses to give a voice to kids and families with unique perspectives to share.  For this I applaud him.

Steve, thanks for all you do.  Thanks for using your talents to spread the word about muscular dystrophy, for volunteering for so many good causes in the Philly area, and for reminding our family that there are many, many heroes in our crazy world.  We are lucky to call this one, friend.

Because of you...

I think to myself, what a wonderful world
Yes, I think to myself, what a wonderful world


Credit to Louis Armstrong, "What A Wonderful World"

Please see the video below.  In case you have trouble viewing it on this site, you can also access it via YouTube.

Wednesday, September 25, 2013

Centerfield


Well, a-beat the drum and hold the phone
The sun came out today
We're born again, there's new grass on the field

A-roundin' third and headed for home
It's a brown-eyed handsome man
Anyone can understand the way I feel

Oh, put me in coach, I'm ready to play today
Put me in coach, I'm ready to play today
Look at me, I can be centerfield

This past summer our local Little League boys went for quite a run, winning the state championship, landing on ESPN, and coming up just shy of heading to the Little World Series. It was great to see boys that we've known for years mature into a special moment that they will remember for the rest of their lives. As I sat and watched the games I thought back to another championship that may not have gained the fame of this year’s team, but sure brought a bit of excitement to our house.

The 2009 girls’ softball season arrived right on time.  The cool of winter was behind us and spring was in full bloom.  It was the perfect time to head to the field.  That season started out the same as others before with no indication that it might be special.  All interested girls went through hitting and fielding exercises to organize their skills, the coaches met over pizza to draft teams, and practice began.

Over the years, Maddie had played various sports from soccer to basketball, but softball was her favorite.  Perhaps it was a love of the game, time outside with her friends, or because her coaches (Donna and our good friend) focused on fundamentals with plenty of laughs on the side.  I am not sure.  All I know is Maddie enjoyed playing pitcher, to catcher, to second base, and centerfield.

Before the first game I was asked to help out the team.  Maybe I was chosen because I used to score baseball games as a kid or maybe because I didn't mind carrying the coach's clipboard.  Either way, after a complete review of all the other candidates (there were none), I was given the unofficial title of Scorekeeper. My job was to list the teams' lineups, keep track of the game, make sure the girls were ready to bat, and verify the score with the umpire. 

While this may sound like stressful work to some, I did receive fringe benefits. Because my official duties required me to be in the dugout, I was able to pass on my secrets to hitting, fielding, and sneaking pieces of the post game snack when the game got a little slow.  I was also schooled in the ways of the softball cheer. For some reason, when you get a group of girls in a dugout they have to sing things like "to the green 13, to the green 13", "hey you on two, wiggle, wiggle, wiggle", or "we want a single just a little single, we want a double just a little double...".  I didn't recall that from baseball, but found myself quietly cheering alongside.  Sorry, they are catchy!

We started out the season with a win, then another, then another. There were struggles and there were successes, but from my dugout view I quickly realized we had something special. We had more than just a group of girls. We had a team.  In game after game, different girls stepped up for that timely hit or to turn that rare double play.  Before we knew it they finished the regular season undefeated and were headed to the playoffs.  Game after game they took the field with a confidence I did not see at the beginning of the season and won out. In the end, they were the recreational league champs. 

A few things have changed since the summer of 2009. Some girls, like Maddie, played one more season of softball, trying to regain the magic of 2009, but it wasn’t there.  Other teams hit their stride and took the league by storm.  Maddie decided to stop after a realization that her skills no longer matched those of the stronger girls heading into travel softball.  She enjoyed every minute of the rec. league game and was not ready to commit to the next stage.  For her, the timing was right as she had discovered her love for acting and singing and wanted to dedicate her free time to that. Some of the other girls transitioned into gymnastics and lacrosse while others continued with softball and are playing for the high school team today.

As we all do, I remember certain special moments from my childhood, which brought me happiness.  Depending on situation, I remember a lot of details or just a moment in time.  Looking back, these didn’t seem to be significant at the time.  They were just regular days where something special occurred.  As a father, I watch our kids and wonder what they will recall when age 30 becomes age 40. Maybe it will be a family vacation, laughs around the school lunch table, or success on a sports field.  It’s impossible to tell which moments of their childhood they will remember fondly, but I hope there are many.

I'm not sure if 2009’s softball season will make the list of the many wonders that Maddie will experience in her life, but I hope so because its made mine. If by chance it does, I hope to be by her side when she looks at me, recalls the story and says "remember when…".  With any luck, we will laugh about the cheers, smile about the wins, and remember the days when I stood by, clipboard in hand, and overheard a little girl say... 

Oh, put me in coach, I'm ready to play today
Put me in coach, I'm ready to play today
Look at me, gotta be, centerfield

Credit to: John Fogerty, "Centerfield"

Here are a few photos from the season: 


Staring down the batter and prepping for strike 3 

The slugger's stance

Hammin' it up in the dugout 

One happy catcher! 

The 2009 Champs!

Wednesday, September 4, 2013

Sail on Silver Girl

When you're weary
Feeling small
When tears are in your eyes
I will dry them all

I'm on your side

When times get rough
And friends just can't be found
Like a bridge over troubled water
I will lay me down
Like a bridge over troubled water
I will lay me down

Some posts come to me in a flash. I hear a song or think of a recent event and they are there just waiting to be written.  Very few are thought out and planned far in advance.  This is the latter.  I saw this one coming far before I began to write a blog or we knew anything about Pompe.  I saw it coming the first time I watched her walk away. The strange thing is I encouraged her to do this twice.  Both times I made a promise to always be there for her. The difference this time is she's not coming home for an afternoon snack and a nap. The first time was elementary school.  This time it's college.


During Emma's graduation party, a good friend of mine told me he realized some time ago that he was living on borrowed time with his kids. From elementary school to middle school and high school, the years went so slow, but yet moved so fast.  He recognized that any extra time he could spend with them while they were still home was a gift.  Sure, they'd always be in his life, but never the same way as when they are young.  As I listened, I realized I had never thought about it that way, but he was absolutely right.  As I watched my daughter circulate across the party that night, laughing with her friends and greeting guests, I was hit with the realization that my time with her home was almost up.  

For those of you who have not gone through it, preparing a child for college is an adventure.  During the summer before junior year of high school and throughout the following 12+ months, you find yourself knee deep in college tours, reading about scholarships, talking about SATs, and encouraging your child to consider what they want to be when they "grow up".  It is a very important yet strange time.  You are asking them to think about where they want to live, what size school they want to attend, what they want to major in, and who they want to be.  It's a lot a pressure for someone you just recently were worried about handing the car keys to.  This wasn't a drive to a friend's house.  This is big time grown up stuff.

We approached the process using the advice of someone I heard speak a few years ago.  He was a college coach who told the prospective players to use the "broken leg" concept if they were lucky enough to obtain an athletic scholarship.  By sharing examples of athletes he coached in the past his message was simple.  When choosing a college, consider what you want out of it, not just who appears to have the best team because if you broke your leg and couldn't play, would you still want to be there? So, if you thrive in large groups, choose a big college , but if you learn better in more intimate environments, choose a smaller school.  If you love the cold days of winter, move North, but if you want to be warm in February, move South.  In short, pick a college that suits who you are and you will set yourself up to succeed. 

During our first college visit we quickly realized that a small school was the right thing for Emma.  As I walked from one side of the campus to the other listening to the tour guide and thinking about how cool it would be to go to college again, I was reminded again and again to slow down.  I like to say it was due to my long athletic strides, but my lovely children tell me it's nervous energy.  Either way, I walk fast and my Pompe girls don't.  Not only do they not walk fast, they need to take frequent breaks after walking too far.  So, the idea of walking 30 minutes from one side of the campus to another for classes or visits to the dorm would not work.  Large schools out, small schools in.

Fortunately there are many, many small schools within 2-3 hours from our home.  In fact, there are so many it was tough to limit the choices.  However, being the logical one in the family, Emma defined her criteria, scheduled tours for the handful she really wanted to see, and chose representative schools for the others.  It worked out well. By the end of the process the applications were sent in and we waited.  Halfway through the process she had to make a decision none of us thought of.  If she went more than a two hour drive from our home, our home infusion nurse might not be able to continue with her.  His schedule is quite tight and servicing patients far outside the regular route would just not work.  We weighed the options of other nursing services or infusion centers, but she shot this down.  She and her nurse are close and changing this on top of all the standard changes that come with college would just be too much. That settled it.  She would choose a small school within a reasonable distance from home, but still live on campus.  It was the best of both worlds.  Fortunately, she was accepted by her first choice and it all fell into place perfectly.

Months past by before she was to graduate high school and the realization of our first child off to college truly hit us.  Sure, we took the tours, filled out the papers, and talked about it over and over again, but suddenly it was really here.  The planning went into full steam with Donna and Emma hitting store after store for dorm supplies and the three of us attending orientation seminars.  All the while I tried my best to spend a little more time with her each and every week.  Hour after hour we would talk, laugh, and I would out-stay my welcome as she needed to complete her homework or see her friends who too were soon off to college.  Like my friend would clarify weeks later, I was on borrowed time and I didn't like it.

As I sat in her room those nights talking about life and laughing, I couldn't help but think about those first few months with Emma.  We were in our mid 20's with very little to call our own, but it didn't matter.  Life with daddy's first little girl was magical. Every morning there was a smile to greet you and every night a baby rocking away to sleep.  Day by day she learned to sit up, then to crawl, then to talk, and then to walk. Every morning and every night she held our hand and allowed us to learn how to be parents and mature as adults.  It was a wonderful time.  Our wish was that one day she would be strong woman, a smart lady, and most importantly a good person.  Little did we know how fortunate we would become.       

Move in day arrived on the calendar and off we went.  We had to take two cars for all the supplies so Donna drove with Emma and I with Maddie.  After checking in, finishing the dorm move-in, exchanging hugs, and a final bit of advice, I did something I had been dreading for years.  I drove away alone.  I wasn't sure how I'd feel, but was positive I would break down, but didn't.  I thought for sure I would be sad, but I wasn't.  No matter how much sadness started to enter my mind, I stopped because she was so very happy.  She had been waiting for this day for so long and was finally on her way.  Today was about her and it was perfect. 

On my drive home I didn't listen to music, I just thought about the day and the so many days that lead up to it.  Doing so, I realized we did good.  Our wish was that one day she would be strong woman, a smart lady, and a good person. She is that and so much more.  The courage she shows in her daily fight continues to be my inspiration and I have no doubt grand things are waiting for her.  It is her time to excel far beyond what I could ever imagine.  It is her time to shine.

So in the end, I know three things for certain.  First, I cannot be prouder of who our daughter has become.  Second, I will miss her something crazy.  Third, my message to her is quite simple and is stated by a couple of my favorite songwriters much better than I ever could...

Sail on Silver Girl
Sail on by
Your time has come to shine
All your dreams are on their way

See how they shine

If you need a friend
I'm sailing right behind
Like a bridge over troubled water
I will ease your mind
Like a bridge over troubled water
I will ease your mind

Credit to: Simon and Garfunkel, "Bridge Over Troubled Water"


A few photos along the way:


She's here, overjoyed!



 Special times at Disneyland

 Proud of my girl


Summer 2013 - France

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