Sunday, February 27, 2011

Born To Be Wild

Get your motor running'

Head out on the highway

Looking' for adventure

And whatever comes our way

Yeah! darling', gonna make it happen

Take the world in a love embrace

Fire all of your guns at once

And explode into space

Born to be wild

Born to be wild

When it comes to being cool, I used to think I fell somewhere between Richie Cunningham and Ralph Malph.  Sure, Richie was not the coolest guy on the TV show Happy Days because of his all American, Howdy Doody face and need to always be nice, but I had to be honest with myself.  I recognized long ago that I would never be Fonzie cool, but at least I knew I would never be mistaken for Potsie.  That was until I stood in front of a group of men and women motorcycle riders at Smaltz's Harley Davidson. 

Over the past 23 years the MDA has teamed up with Harley Davidson to raise millions of dollars through the Ride for Life campaign.  The campaign starts at the local dealerships by building awareness and slowly grows to a two-day event where thousands of motorcycle riders from the Northeast meet in Reading, PA to celebrate two days of fundraising, Harleys, and whatever else those guys who look and act like Fonzie do.

A few weeks ago Maddie and Emma were asked by the local MDA chapter to be their Ambassadors for the event.  This involved visiting a couple local Harley Davidson dealerships, talking with riders about their condition, the importance of the ride, and eventually spending two days in Reading celebrating the event.  When I first found out, I was excited for them (and me).  Here was another great opportunity for them to speak on behalf of those with Pompe and muscular dystrophy, have a little fun, and perhaps get a tattoo (that was a joke).  For me, I saw it as an opportunity to increase my cool quotient above Richie status and perhaps sneak in a ride or two.  Unfortunately, they will not be able to attend due to other obligations so I quickly filed it away in the maybe next year folder.  Then, the door re-opened.

A couple Fridays ago we got a phone call from the MDA office asking if we could squeeze in a visit to the local Harley dealership because the little guy who planned to be there was ill.  I quickly checked schedules and found that Emma was available.  I tried to be cool and say, "Sure, we can," mentioning that Emma always likes to help and that Donna and I would pop in for a few, but I think they could hear my excitement.  When Richie wanted to be cool, he always overdid it.

When we arrived at Smaltz's Harley Davidson, one of the local MDA reps (Ben) explained what Ride for Life was, how important it was for the MDA, how generous the Harley Davidson community has been, and that he needed one of us to talk to the riders before the dealership's monthly meeting.  None of us were prepared to speak, thinking that we were just going to stand around and greet individual riders, but we said we would be pleased to help.  Since I am usually the one talking I thought it would be great for Donna or Emma to speak, but when he asked for a volunteer to step forward, my family took a step back.

After years of speaking in front of groups I've learned that it's important to both know your audience and be prepared.  In this case I was neither, but before I walked up to the group I told myself to be confident.  After all, I know a guy who owns a Harley.  However, as soon as I stood there in front of the group clad in black leather, two things came to mind.  First, they were definitely looking at yours truly wearing my gingham button-down shirt, J Crew jeans, and responsible loafers thinking, "What's with Potsie?”  Second, I realized the only black leather I had on me was a money clip.  I was out-numbered, mumbling, and feeling very un-cool.

I just started to talk and hoped for the best.  I explained what Pompe is, how it affects our girls, how important the Ride for Life event will be for families facing muscular dystrophy, and how much we appreciate everyone's dedication to this cause.  I then threw in a joke about my knowledge of motorcycles (not much) and how Emma wants me to buy her one.  That seemed to win them over, at least to Emma's camp.  At the end several of them thanked us for coming and sharing our story.  Even more stopped to tell Emma about all the different bikes she could buy and that (despite her un-cool dad) she could and will be a Harley rider someday.

One great thing about being involved with these events is that you get to meet amazing people you may not meet otherwise and see their hearts open for good causes around them.  Sometimes it is too easy to place people into boxes based on what they wear, how they look, or what type of motorcycle they ride.  As you dig deeper you come to realize that despite outward appearances, most people are just like you.  They believe in family, they believe in friendship, and they believe in helping others wherever they can.   

On the way out, I stopped with Emma to check out a few bikes and talk about how cool it might be to buy a black leather jacket, grow a ponytail, and take on the open road.  Then I came back to reality and realized it would be safer if Richie and I stuck to four wheels and four doors.  Emma on the other hand has a bit more cool in her, from mom's side of the family.  I guess I'd better be nice to her for a few more years because perhaps one day she will buy that leather jacket, that Harley, and take me on a future Ride for Life.  I hope she's not too embarrassed when I sit on the back and sing ... Born to be wild!

Thanks to all my fellow HOG riders,

Credit to: Steppenwolf, "Born To Be Wild"

Monday, February 21, 2011

Good Vibrations

I love the colorful clothes she wears 

And the way the sunlight plays upon her hair 

I hear the sound of a gentle word 

On the wind that lifts her perfume through the air 

I'm pickin' up good vibrations 

She's giving me excitations 

I'm pickin' up good vibrations 

She's giving me excitations
Good, good, good, good vibrations 
She's giving me excitations
Good, good, good, good vibrations 
She's giving me excitations

I began to notice it the night before as Maddie and her friend sat at the kitchen island with Donna making signs.  They filled board after board with sayings like "Go Team Crowley", "Make A Muscle, Make A Heart", and "Pompe Power".  It continued the next morning as soon as Emma and Carter's friends began walking through the door.  The mood was clearly upbeat, in fact, a bit festive.  Within minutes the house was filled, filled with the excitement that frequently comes along with voices of young people.  It was filled with Good Vibrations, as today was the MDA Walk.

In a previous post, I spoke about the importance of the day, what it meant to our family, and hopefully what it would mean to others.  The post was a bit "heavy" carrying on from our experience at the MDA Muscle Summit back in October.  Today was different. For us, today was not a day for reflection as much as it was a day for celebration.  

When we arrived at the mall and welcomed friend after friend we were nearly brought to tears.  We expected a big turnout, but seeing everyone was overwhelming. Everyone was in a great mood, ready to walk, ready to support our girls, and anyone there with muscular dystrophy.  As Donna and I greeted the members of Team Crowley clad in red, white and blue, we saw great signs and shirts.  The signs covered the spectrum from "Crowley Crusade" to "Emma and Maddie R RedHot", and to "Emma and Maddie are Hot Tamales" (both with the boxes of candy glued to the board of course.)  The homemade t-shirts varied from those painted with "CC" for Crowley Crusade to a family of five who spelled out P-O-M-P-E on the front and P-O-W-E-R on the back.  Awesome! 

After a quick 3-2-1 kickoff, the walk began and the Good Vibrations continued.  One of our friends decided to lead Maddie and her friends in cheers as they walked through the mall.  The chants "I say Emma, you say Crowley", "I say Maddie, you say Crowley", and "I say Carter, you say Wooh!" filled the mall.  It's amazing how loud a group of 12 year old girls can be.  Next, came the Zumba dancers who were there to entertain the crowd. When Maddie's team found them, the signs dropped, the girls headed to the dance floor (along with their leader), and Zumba began.  Even Carter joined in.  I know funny, and that was funny.  

The festive atmosphere continued through the morning as Donna and I tried to speak with everyone we could and thank them for coming.  Each and every person said there were impressed by the turnout and genuinely pleased to share the day with so many other great people supporting a great cause.  The attendees included friends and neighbors, our fantastic nurse from CHOP, and a few people who have held our hand through this entire process and by doing so have become family.

At the end of the walk all the teams gathered around as Page from the MDA read off the awards.  Several teams won prizes or awards including a door prize for Emma's Key Club and a plaque to the Crowley Crusade for the largest team.  Through the great work at Emma's school and the support of so many of you, we jointly raised nearly $8,000 with the MDA total for the day at $55,000.  A great success!

On the drive home our friend who took the lead cheering on Maddie's group of girls was asked why he did what he did, cheering, dancing, etc.  His response was, "Did you see Maddie's face?  Did you see her smile?  That's why."  When I heard that I sat down, reviewed the day and wondered how we got so lucky, so lucky to find a group of people who would take time out of their lives to raise money, spread the word, and walk with us on an early Sunday morning if nothing else than to bring a smile to our daughter's face.

On behalf of the Crowleys, please accept this sincere thanks to every person who had us in their thoughts, donated to this event, and walked side by side with us yesterday.  You unexpectedly filled our hearts with...              

Good, good, good, good vibrations 

All for Two and Two for All!

Credit to: The Beach Boys, "Good Vibrations"

Making signs the night before

Carter and Emma's friends

Someone told me this was the first sign 
they saw and it only got better

Maddie, her friends, and their loyal leader

Zumba anyone?

Some members of Team Crowley

Saturday, February 12, 2011

All You Need Is Love

Love, Love, Love.
Love, Love, Love.

Love, Love, Love.

There's nothing you can do that can't be done.

Nothing you can sing that can't be sung.

Nothing you can say but you can learn how to play the game.

It's easy.

Nothing you can make that can't be made.

No one you can save that can't be saved.

Nothing you can do but you can learn how to be you in time.

It's easy.

All you need is love.

All you need is love.

All you need is love, love.

Love is all you need.

In 1975 Valentines Day was simple for this six-year-old boy.  My job was straightforward.  With a little construction paper, a little glue, a few crayons, and a little love, the perfect Valentines card was created.  Like most boys my age, passing that Valentine to the girl at the next desk just didn't seem right.  First of all, girls were still alien creatures at that time and secondly, it had to be saved for that special someone.  That special someone who had waited all day for me to get home.  That special someone who always had warm chocolate chip cookies in the yellow Tupperware waiting for me.  That special someone who seemed to solve all the problems a six year old could offer up.  That special someone named Mom.

I grew up in a large family of six kids with one lucky sister at the top of the heap, four brothers, and then little old me.  Those of you who grew up in big families know that being the youngest had its privileges and its drawbacks.  You were always Mom's baby, but were also the smallest one during wrestling battles so it was either team up or watch out.  Looking back, I find it amazing that even after everyone else was fed, clothes washed, fevers mended to, and homework done, Mom still had time for the little guy.  Being a parent myself now, I struggle sometimes to find that correct balance for three kids let alone six.  Fortunately, somewhere along the line my Mom taught me that when it comes to little ones, despite all the little pains and suffering of life sometimes, all you need is love.

The other day I accepted a Facebook friend request from a grandmother who's granddaughter has Pompe.  Being attached to the Pompe community through Facebook has brought many unexpected heroes into our lives.  Every so often I get a friend request from someone with Adult Onset Pompe who has a happy profile photo, appears to be responding well to medicine, and has a good outlook on the future.  These friend requests are easy to accept as they are another example that down the road my girls will continue to do well.  And then there are the requests from those with Infantile Pompe.

For anyone who may not remember, Infantile Pompe is a bit different from Adult or Late Onset Pompe.  The symptoms usually appear within the first few months of life, an enlarged heart is usually involved, significant muscle weakness is seen, and difficulty breathing is pronounced.  Depending on the uniqueness of an Adult Onset patient, these things can also be seen (usually minus the heart issue), but are gradual, appearing over years, not within the first few months of life.  On top of all that, as the patient is very young, they are not able to tell you where they ache, if they are having trouble breathing, or most importantly how the feel.  I've found this last one so important for our girls as chronic diseases come with many emotions and many questions.

Unlike the profile photos mentioned above, at first glance sometimes all you notice is a young child connected to an IV line.  However, as you begin to follow the Mom's (or Grandma's) narrative, read the supportive comments from their family and friends, and visit the posted photos, you become humbled.  Just like in our house, while their child is fighting their physical battle against Pompe, moms are fighting the physical, financial, and emotional battle.  What's different for those with Infantle Pompe is the severity of the condition and the age of the patient.  But, what's the same is a mom's love, which despite an incredibly unfair situation somehow shines through in every post about their angel at home celebrating a birthday, at the hospital battling pneumonia, or at an IV center receiving Myozyme.

For all you Moms and Grandmas out there fighting on behalf of your little ones be them 6 months or 16 years, I want to thank you for your inspiration.  I also want to thank you for reminding me of a lesson I learned many years ago that despite all the marketing around Valentines Day, all it takes for a child is a little construction paper, a little glue, a few crayons, and a little love, to warm a mother's heart. Please keep those Facebook posts coming and remember one thing for me.  While life will always have its good days and bad days, strong days and weak days, happy days and sad days, be sure to hug that baby and show the world that in a child's eyes...

All you need is love.
All you need is love.

All you need is love, love.

Love is all you need.

Happy Valentines Day!

Credit to: The Beatles, "All You Need Is Love"

Sunday, February 6, 2011

Pretty in Pink

Caroline laughs and it’s raining all day
She loves to be one of the girls
She lives in the place
In the side of our lives

Where nothing is ever put straight

She turns herself round
And she smiles and she says
“This is it. That's the end of the joke”
And loses herself in her dreaming and sleep

And her lovers walk through in their coats

Pretty in pink

Isn't she? 

Pretty in pink

Isn't she? 

A funny thing happens after you graduate from high school and get busy building your career, signing up for mortgages, and starting families.  Somehow the words your parents said, "I just don't understand kids today" come out of your mouth. Somehow your favorite radio station is no longer the one playing the top 40, but one that plays a mix of the 60s, 70s, and 80s.  Somehow the movies and songs you loved as a teenager find their way into your kids lives as "retro".  And, then suddenly, out of nowhere, your baby turns 16.

Last weekend, we celebrated Emma's 16th birthday by taking her and her friend to New York City for dinner and a Broadway show.  On the drive up, they popped in the movie Pretty in Pink and started to laugh.  For those who don't know, Pretty in Pink is a classic 80s teenage saga depicting the lives of Andie, Blaine, and Duckie and their high school struggles through cliques, friendship, and love.  Andie is a poor girl who falls in love with the rich boy (Blaine) while her best friend Duckie tries to find a way to explain his love for her.  The beauty of the story is that despite all the pains of being teenagers, Andie stays true to herself and her friends.  

As I drove through New Jersey and listened to the movie I thought about Emma's struggles in high school and how she has overcome them.  Last year while we were dealing with the emotion of Maddie's diagnosis, she was quietly trying to understand why she could not make it up stairs as fast as the others and how embarrassing it was to trip in the hallways.  Inside, I'm sure she knew she too had Pompe, but did not want to bother us with it.  She maintained patience and focus.  A year after her diagnosis and ten months of Lumizyme treatments she is stronger, doing well in school, and most importantly happy.  Despite a tough road for my 16 year old, she has been patient, remained true to herself and to her dear friends.

In Pennsylvania you don't receive your driver's license the day you turn 16.  Rather, you receive your driver's permit and have to wait six months for that prized possession.  This offers you a bit more time to understand what it means to drive and a bit more time to accept the freedom that comes with growing up.  While Donna and I walked the streets of NYC, Emma and her friend walked a little bit behind us and when she wanted to share a destination with her friend, we let her go on her own. There was no discussion of Pompe nor questions if she could keep up her strength walking the long distances, just a 16 year old slowly accepting the freedom of growing up and two parents patiently coming to understand what it means.

We finished our night with The Phantom of the Opera at The Majestic Theater.  Both of the girls had heard bits and pieces of the story and a song or two, but did not know what lied ahead.  At the intermission, they looked at us trying to make sense of what they'd seen and asked if that was the end.  We told them to be patient, think about the experience, and wait for the final act.  At the end of the show they sat in their seats with tears understanding the power of love gained and love lost. 

As we drove home past midnight, the girls watched the conclusion of Pretty in Pink.  At the end of the movie, Andie goes to her senior prom alone and meets up with her best friend Duckie.  While he wants nothing more than to spend the evening with his hidden love, Blaine arrives, and Duckie tells her, "If you don't go to him now, I'm never gonna take you to another prom again!  This is an incredibly romantic moment, and you're ruining it for me."  So off she goes with her love while her friend smiles.  It's a bit happier than the Phantom ending, but the meaning is the same.

As the credits began to roll, the song "Pretty in Pink" started to play and I found myself quietly singing words I thought I'd forgotten.  I sang and smiled knowing how lucky we were to share a Sweet 16 with Emma and how lucky we will be as we continue to watch her grow emotionally and physically.  She too will experience the power of love gained and love lost, but with her strength and support from family and friends, my baby will be OK.

So I guess it doesn't matter too much that my radio station plays the oldies or that sometimes I don't understand kids today.  In the end, we parents are the lucky ones. Whether my Emma is 1, 8, 16, or 32, in my mind and in my heart she will always be...

Pretty in pink

Isn't she? 

Pretty in pink

Isn't she?

Happy Birthday Emma!  Make a Wish!


Credit to: The Psychedelic Furs, "Pretty in Pink"