Monday, January 16, 2012

Walk This Way

She told me to
Walk this way!
Talk this way!
Walk this way!
Talk this way!

For those of you too young to remember, long before Steven Tyler was sitting behind the desk on American Idol, he had a little band in the 70's named Aerosmith. Then one day in the 80's, while practicing their well known song, RUN DMC knocked down the wall and created a masterpiece. In case you haven't heard or seen it, click here: Walk This Way

On February 26th, we plan to be filled with the same energy and spirit, participating in the MDA's second annual Muscle Walk at the King of Prussia Mall in Pennsylvania. Our team, Crowley Crusade, will be walking along with many other MDA families to raise research money for muscular dystrophy.

Last year, Crowley Crusade raised nearly $5000 for Pompe Disease research and this year our goal is to go even higher! Please sign up at, donate a few dollars, and walk a few laps with us to show support not only for our girls, but also for the many children in our area who battle each and every day against muscular dystrophy.

If you are unable to participate in person, please consider making a donation. Every penny makes a difference! You can donate by visiting our team's site at If times are tough and you can't donate, please consider signing up just to walk or dropping a note of encouragement to our team.

Perhaps for the first time ever, I can guarantee you will leave the mall richer than you entered. You will meet adults whose strength will impress you and children whose power will leave you inspired when they pass you by, look back and challenge you to...


All for two and two for all!
Matt and Donna Crowley

Credit to: Aerosmith and RUN DMC, "Walk This Way"

As you can see from the following photos, last year was a blast for everyone. The MDA promises this year will be even better!  Mark your calendar and come join us!

Part of our team

A little team spirit!

Dancing with the Zumba Girls

The big kids showing their support!

 Pompe Power Represent!

Friday, January 13, 2012

Little Yellow Corvette

I guess I shoulda known
By the way you parked your car sideways

That it wouldn't last

See you're the kinda person

That believes in makin' out once

Love 'em and leave 'em fast

But it was Saturday night

I guess that makes it all right

And you say what have I got to lose? 

And honey I say

Little red corvette

Baby you're much to fast

Little red corvette

You need a love that's gonna last

There are two sentences daughters say that drive fear through even the strongest of fathers. Even though you know it's just a matter of time before you'll hear them, you are still stunned when you do. They are signs of the thing you fear the most.  Your baby is growing up.

The first sentence is, "Daddy, I have a boyfriend!" and the second is, "Daddy, I got my driver's license!"

I try not to hide my head in the sand and deny that my daughter is getting older, but somehow it just happens. One photo of the first day of school passes to another showing the proof, but time moves quickly. You get busy; spend time on work, home improvement projects, and occasionally a hobby or two to pass the time.  Before you blink, they go from the little girl in elementary school chorus, to the first day of high school, and then to the Department of Motor Vehicles.  You listen to people older than you tell you that it goes by in an instant, but you think that's for others.  You think that until she skips out with a big smile and driver's permit in hand.  She's ready to get behind the wheel.

It's fun to teach your kids to drive.  Dozens of circles around a church parking lot or a slow drive to the grocery store offers something to be cherished -- time.  There is time for one-on-one conversations, time for your old stories, and time to teach your child to be a better person.  There is time to share the best of the world and time to hope that future windshield views will only be of flowers, beautiful landscapes, and wonderful opportunities.  But no matter how much you think about it you still wonder where the time has gone.  How could my little girl be driving?  

This commercial sums up how I felt:

Emma will soon get her driver's license. She's put in hours behind the wheel, completed a driving course with an instructor and soon will take her test.  While the fear of her driving alone and one day driving off to be on her own resides just below my skin, I press on for her.  I press on with a quiet joy that she can do what she is doing even though there was some doubt just two years ago.

Shortly after Emma was diagnosed with Pompe disease she completed a battery of tests from cardiac exams, to breathing reviews, and finally one physical test after another.  There were tests that challenged her to walk, to run, to sprint up steps, to jump up from the floor, and to use her fingers putting small blocks in small holes.  The first few made perfect sense to me because I understood Pompe could impact her heart, her breathing, and her physical strength.  What I didn't understand is why the doctors brought in occupational therapists to test things that seemed so obvious to me.  Then it was explained.  Pompe doesn't just impact the big muscles, it can also impact the little muscles we use everyday without thought.  It can affect the muscle strength in your hands, your feet, your fingers and your toes.  

So, you can appreciate my confusion when the occupational therapist told us that we should be thinking about Emma's ability to drive.  "Drive?”, I questioned.  What did any of this have to do with driving?  They explained that she might not have the strength to release a parking brake with her hands, press down on the gas pedal to accelerate, or have enough dexterity to turn a steering wheel.  They said she might require special supports for the pedals, special handles for the wheels, and maybe a special car.  That was far too many "specials" in one sentence to me.  I just wanted her to grow up and allow me the honor of teaching her to drive.  I didn't want her to think about any of that.  

So as the months past and the day she turned 16 edged closer, I can't deny I was a bit anxious.  I wondered what would happen the day she got her permit.  Would she be able to drive like everyone else or would we need to adapt her car with gadgets to make it happen.  We would do whatever we needed.  We just didn't know.

Fortunately, the magic of Lumizyme has kept most of her muscle weakness at bay. Even though she struggles to release the parking brake at times, her driving has improved to the point none of us thought about it.  Like with most of the challenges she's faced, she adapted and moved on.  She was prepared to drive, but neither of us were prepared for last Saturday.

As Emma, Donna and I got in the car, we commented how perfect the day was.  It was January in Pennsylvania and over 50 degrees.  As we approached our friend's house to drop off Maddie, we saw something special.  It was my friend's 1968 Corvette.  The hard top was off, the leather seats were shining in the sun, the engine was running, and my friend's message was simple.  The keys were hers and there was to be no doubts and no questions.  Today was the day, the day for Emma to drive the Little Yellow Corvette.

As Emma slowly backed out of the driveway and onto the roads, I thought about how lucky she was.  Not only does she know someone who has a Corvette, she knows someone who leaves it running and says, "Go have fun!”  So off we Best Buy, to the mall, and all around town.  She let me drive for a few minutes, but quickly grabbed the keys.  The wind blew through her hair and the engine roared.  She was soaking it in.

My lasting memory of that day will be when we stopped to show the car to one of my friends who has helped Emma in many, many ways. As he walked out to see the car, she smiled and said, "Wanna go for a ride?” He jumped in; she turned on the car, put it in drive, and started to pull away. She then stopped, looked back over her shoulder to make sure it was OK. I swallowed my fear, smiled, and gave her a gentle nod of approval.

Today was a day to enjoy and embrace. Today my baby girl created a memory that she will retell over and over again. She will tell her friends, her husband, and hopefully one day in between right and left turns, she will tell her own daughter as she teaches her to drive.  Hopefully, she will share the story about a mild Saturday in January when her and her dad spent the afternoon with the top down and the engine roaring.  She will remember with a gentle smile and a fondness for the day she got to drive that...Little Yellow Corvette.

Drive safe,

A special thanks to my friend with the keys.  I don't need to tell you how much this meant to Emma because you already know.  I saw it in your smile as she jumped behind the wheel.  This author is a big fan of Anonymous.

Credit to: Prince, "Little Red Corvette"