Friday, June 25, 2010

15 For a Moment

I'm 15... for a moment
caught in between 10 and 20
and I'm just dreamin'
countin' the ways to where you are

15 there's still time for you
time to buy and time to lose
15... there's never a wish
better than this
when you've only got a hundred years
to live


As a young man I remember that itchy feeling of freedom that comes upon you when you are no longer a child, but not quite an adult.  The time when the world is filled with wonder and every opportunity remains within reach.  For me, that feeling uniquely resides in the eyes of a 15 years old.  You've entered the new world of high school, and the thoughts of college, a job, and a mortgage seem so far away.  During this time many of us tried to find a place where we could dream of tomorrow be it in our rooms, at a beach, or a friend's house.   

Emma resides in this wonderful age and has found her place of freedom behind the steering wheel of a grey VW Passat.  No, she doesn't have her license or even her permit.  The Passat is firmly planted in our driveway as the extra car which has transitioned from "the car that she can use when she starts driving" to "Emma's car", according to her at least. 

On any given evening you can find her behind the wheel doing homework, listening to the radio, or hanging out with her friends all the time gazing out that front windshield.  I'm not sure what Emma and her friends talk about, but I have a feeling it isn't about the flowers in the backyard.  Instead, I have a feeling it's about laughter, tears, opportunities, and dreams.  The future without limits.    

Now I know that in a few short months that car will no longer be sitting on the driveway, but driving away to some gathering.  And I know that in a few short years it will pull out of that same driveway on the way to college and in the direction of those dreams. 

In the meantime, Emma, the keys are yours.  Dream on and don't let anything hold you back, not boys, not bosses, and especially not Pompe.  I know this diagnosis wasn't in your plans, but remember that this may lead you to wonderful places you've never imagined.  Please take my advice and live with boldness and take time to remember the dreams of today and to dream the dreams of tomorrow.  After you are all "grown up", let me know if you ever need that Passat to share a few dreams with your friends and I'll have it waiting for you.  Who knows, maybe you'll even let your old Dad join.   

Hey 15, there's never a wish better than this,
When you only got 100 years to live

Keep those dreams coming,
Matt


Credit to: Five for Fighting, "100 Years"

*If anyone has not heard this song, it's worth a few minutes.  Here's a link to the video.
http://www.youtube.com/watch?v=tR-qQcNT_fY
Five For Fighting.  "100 Years" 2004  All rights reserved.

 

Thursday, June 10, 2010

Take Me Out To The Ballgame

Take me out to the ball game,
Take me out with the crowd.
Buy me some peanuts and cracker jack,
I don't care if I never get back,
Let me root, root, root for the home team,
If they don't win it's a shame.
For it's one, two, three strikes, you're out,
At the old ball game.

I can’t recall if it was the smell of freshly cut grass or the unique sound made when a baseball meets a wood bat, but as we climbed the stairs onto the field it was clear that this was a day to remember.

Like most boys my age in California, I never heard of lacrosse, rugby, or that crazy sport those Europeans call football. I played baseball. Whether it was an organized community game, a pickup game before school at St. Angela’s, Over the Line with my two brothers at the park, or the non-stop two-seam fastballs that hit the garage door over and over and over, I loved the game. As a young kid my heroes were Davey Lopes, Steve Garvey, and Ron Cey. I remember sitting in the stands above Chavez Ravine and taking in Dodger Dog after Dodger Dog, followed by the Carnation Ice Cream, and driving my Dad crazy with continual questions about this player and that.

Fast forward a few years…and then a few more…

This past Monday we were invited to Citizens Bank Park, home of the Philadelphia Phillies, through a special program Brad Lidge runs with Children’s' Hospital of Philadelphia. For those who don’t follow baseball, Brad Lidge is a closing pitcher for the Phillies. He is the one that threw the last pitch in the 2008 World Series that gave the Phillies their first championship since 1980. In a town that has craved a championship for many years, that pitch unleashed a celebration even Dick Clark couldn’t handle. Wherever his baseball career takes him, he will always be remembered in this city as a champion.

Brad created Lidge's Legion in 2008. It benefits CHOP by inviting patients and their families to a game each month. Kate, aka the best Child Life Specialist on the planet, provided us with the tickets and the chance for our first experience at the Phillies' stadium. We arrived at the Diamond Club entrance with a few other CHOP families at 5 PM where the girls received a Lidge's Legion hat, pin, and tickets for the whole family. We then took an elevator down to the basement and followed the basement halls until we could see daylight. Up the stairs we went, passing the visitors’ dugout on the left and finding ourselves standing on the field in the midst of batting practice.

We knew the field visit was part of the night. I even asked the kids to take a second and breathe in the moment, because this old man had never stepped foot on a major league field and didn’t expect to again. It was something special. Now despite all that fatherly advice, within seconds I was ten years old again standing in the land of giants. Just a few feet away from us were today’s heroes Ryan Howard, Chase Utley, and Shane Victorino, each smashing balls into the outfield. And off in the distance was the familiar face of Davey Lopes, the Phillies’ first base coach. It was a thrill for all of us as we looked around the stadium, took photos, pointed out the players, and even kneeled down into the dirt just for the experience.

That was enough for us until Brad Lidge walked up. One by one he talked to every child and their families signing anything from baseball card after baseball card. He could see this was important to the kids and was in no hurry to move along. When he got to us he said hello, asked how we were doing, took pictures, and signed souvenir baseballs, hats and even Maddie’s Phillies shirt. After about 30 minutes he double checked with each family to ensure they had a good time and told them to enjoy the game. Off he went to play Major League Baseball and off we went to our seats, still a bit in shock and instant fans. Kind, gracious, and welcoming are not the words typically used for today’s sports stars, but Mr. Lidge had them all.

We soaked up the whole experience from the dollar hot dog night, laughing at the Phillies Phanatic, cheering on the team, and singing “Take Me Out To The Ball Game” at the 7th inning stretch. Unfortunatley, the Phillies lost in a nail biter, but it did not matter. We had a great time.

Back in February I shared a story titled Welcome to Holland by Emily Perl Kingsley. It spoke to the feelings one has when they learn their child has a disability and compares it to getting on a plane to Italy only to find yourself arriving in Holland. One of my favorite sections from the story is:
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around....and you begin to notice that Holland has windmills....and Holland has tulips.
As Maddie and I walked hand in hand to the car, we turned to admire our adopted home team's stadium one last time and talked about our great night. As I picked her up and jogged to the car, I wondered what Italy must be like this time of year and wished we could turn the plane around and land in Rome like all the other tourists. But just then I heard Maddie’s laughter and suddenly all I could see were windmills and tulips lining our path forward.  I'm sure Italy is a nice place to visit, but Holland is all right by me.

Go Phillies!
Matt

Credit to: Jack Norworth, "Take Me Out To The Ballgame"

PS: Brad Lidge is the Man!!


Friday, June 4, 2010

Carry That Weight

Boy, you're going to carry that weight,
Carry that weight a long time
Boy, you're going to carry that weight
Carry that weight a long time


A recent blog comment from a dear friend got me thinking. The comment went like this:
Hopefully, this family will see the people around them care in a way that they never even imagined people could care for them. A caring that was always there, but lost in the shuffle of every day life.
Last Friday Maddie's 5th grade class attended Music in the Parks in Hershey, Pennsylvania. This is a competition between regional elementary, middle, and high school band and chorus groups which includes performances, an awards ceremony and a day at Hershey Amusement Park with all the rides and mini candy bars you desire. As with many school field trips, the day started early in preparation for the 1-1/2 hour bus trip to Hershey. By 1:30 the kids and parents were finished with in the park eating $10.00 hot dogs and standing in line for that ultimate roller coaster - Fahrenheit. Several hours and walking miles later, it was time to head home.

While Emma's Pompe seems to affect her muscles in both her legs and upper body, Maddie's seems focused on her legs for now. So after a long day of walking, she gets tired and her legs ache. That's one of the reasons Donna joined the trip as we can recognize when she begins to slow down. As their small group including three of Maddie's friends and their dads exited the park she told Donna she was tired and needed to be carried to the car. As Donna was getting ready to pick her up, one of Maddie's friends hoisted Maddie on her back and step by step began carrying her toward the car. Once she couldn't go any farther she past the duty to the second friend and then to the third until Maddie was comfortable in the car.

Now I am in fairly good shape, for a 40 year old guy, but I am sure I could not carry the weight of someone my size for very long. And, I don't think in normal circumstances 10-11 year old girls could either. Unless you are a fire fighter, the body just isn't designed that way. But the difficulty never seemed to enter the girls' mind. Their friend needed help and they were going to do it with grace and teamwork.

Since that day none of the girls or their parents have called us for a thank you or a "I Carried That Weight at Hershey Park" t-shirt, which leads me back to the comment above. How many times have we seen simple acts of caring performed in this crazy world? When I do, sometimes I notice, sometimes I don't and when I do notice sometimes I smile, and sometimes I don't. It's far too easy to focus on the business of the day and the negativity in our world from big issues like an oil spill in the Gulf to small issues like a pitcher's perfect game in Detroit...that wasn't.

People have asked why Pompe Disease chose these two girls and what value can come from it. I don't have an answer, but pray that one day I will. In the meantime, perhaps this has opened my family's eyes a bit more to the caring that is lost in the shuffle of every day life. A caring that comes from a drug company that produces a life saving medicine, from family and friends who show they care through help with the kids and a call to check in, and especially from three little girls who showed they care by lifting a friend in need on their back and carrying her weight.

To this last group I have a very special thanks as their simple act of caring was not lost in the shuffle. It has lifted the spirits of an entire family.

Best,
Matt 

Credit to: The Beatles, "Carry That Weight"

PS: Thanks again to Lennon and McCartney for their inspiration. I'm fairly confident the Fab Four weren't thinking about four girls in Hershey, PA when they recorded this song, but I'm glad they did.