Thursday, January 27, 2011

You Can't Always Get What You Want

I saw her today at the reception
A glass of wine in her hand
I knew she was gonna meet her connection
At her feet was footloose man

You can't always get what you want
You can't always get what you want
You can't always get what you want
But if you try sometimes well you might find
You get what you need

If you were to ask five people the difference between the words "want" and "need" you are likely to get five different answers.  For many people, these two words are synonymous.  As children, we all pleaded with our parents for the latest toy saying, "But I need it!" and usually heard some boring lecture explaining that we didn't "need" the toy, but "wanted" the toy.  Blah, Blah, Blah.  Over time, we mature, see a few things, experience a few hardships, have a few successes, and come to realize the two words are truly different.  We learn that while you can't always get want, if you try sometimes you just might find, you get what you need.  

The start of a New Year is a significant milestone for many.  It represents a fresh start, a new opportunity, or a chance to return to what they've strayed from. Rightfully so, many people use this date as an opportunity to get back on track or perhaps define a new track to follow.  Either way, the New Year equals change for the better.  While I am not much for New Year's resolutions, I've followed the same hopeful mindset for most of my life. After all, who wouldn't love the chance to wake up and get what you want?

When I poured my usual cup of coffee and picked up the newspaper this past January 1st, something seemed out of place.  Everything was the same as the year before, but felt odd.  We had a nice New Year's Eve with friends and family, the morning paper listed the college bowl games, the Rose Parade was on TV, but it wasn't right. I set it aside figuring that perhaps the realization that the holiday season was coming to a close was affecting my mood and set off to enjoy the paper. However, hours later after discussing with Donna, I discovered the answer.

This New Year felt different because despite all the fanfare, the year wouldn't be different from the one before. In four days treatment day at CHOP would reappear, the schedule would fill up with physical therapy appointments, and our usual trip to the grocery store would be another detailed process of finding the right proteins, studying whole wheat content in the bread, and trying to find snacks the girls could take to school and not get bugged for being health nuts.  On the calendar it was a New Year, but it was just a continuum of the days and months before.  Pompe was here to stay and the chance to wake up and get what we want wasn't possible.

One challenge with rare diseases is connecting to others who share your experience. We have made some great connections over Facebook, but as there are only a few hundred Pompe patients in the US, most are miles and miles away, preventing face to face meetings.  Don't get me wrong, every day I am humbled by the love and support we receive from our friends and family far and wide.  However, once in a while it would be nice to shake a hand, look into someone's eyes, and share your hopes and fears with another who understands. 

Early on, Day Medicine at CHOP seemed like it would be a natural place for camaraderie.  After all, this is a location focused on IV treatments for children.  What we found was a wonderfully supportive staff, but parents with little to say.  Due to privacy issues and each one's unique medical situation, most parents would come and go without saying a word to one another.  We were fortunate to make friends with another local Pompe family, but as luck would have it, their treatment day was different so a regular meeting was not possible.  Looking back, I must admit I did not think too much about the situation at the time because I was only able to attend treatments once in a while but, for Donna and the kids the void was clear.

Last Wednesday I was able to join the family at CHOP.  I planned to just pop in for lunch and get back to the busy activities of work life, but my plans changed. When I arrived, I found just what I was expecting. Emma was resting in the room and Maddie was fast at work on another creative task under Kate's watchful eye. But, at the same time, Donna and one of the nurses were quietly chatting away.  It seemed that there was a new patient today.  

This new patient did not have Pompe, but he too would be getting IV treatments like our girls and would be a regular visitor.  Donna, always the shy and meek one, first made sure it was OK with the nurses, then walked right in and introduced herself to the new patient and his parents.  What she found was familiar.  Here was a child, just like ours, trying to comprehend why he had to be pricked with a needle and here were two parents, just like us on day one, who's eyes were filled with concern and bodies clearly suffering from exhaustion.

Suddenly, the place came alive. Over the next several hours, the kids compared IV poles and discussed cool things about CHOP while the parents shared story after story.  We spoke about the first times we felt something wasn't right when we watched our kids run, about the process of diagnosis, about denial of the results, about parental guilt for something we could not control, and how fortunate we are that a company has developed a treatment for a few kids who truly need it.

At the end of the day, as their little man put on his jacket and proudly marched out like a warrior after a successful battle, his parents stopped to say thanks.  We agreed that what we all wanted was to zip up our coats and walk out one last time as proud as their son, knowing our kids were cured.  That was not in the cards, at least for that day.  Instead, we thanked each other again, wished them well, and promised to see them next time.    

In two weeks we hope to see this family again and also hope things continue to go well for them physically and emotionally.  On the other hand, if they have to change schedules and we can only see them periodically, that is OK too. Because for a moment in time, when we both needed it, we were able to shake a hand, look into someone's eyes, and share our hopes and fears.  At that moment, both parents realized that…

You can't always get what you want
But if you try sometimes you just might find
You just might find
You get what you need 

Happy Belated New Year!

Credit to: The Rolling Stones, "You Can't Always Get What You Want"

Wednesday, January 19, 2011

Dance the Night Away

Have you seen her? So fine and pretty
Fooled me with her style and ease
And I feel her from across the room
Yes, it's love in the third degree

Ooh, baby, baby
Won't-cha turn your head my way?
Ooh, baby, baby
Ah come on! Take a chance
You're old enough to

Dance the night away
Whoa-oh, Come on girl, dance the night away

It is a well-documented fact that the Crowley men are not dancers.  From Grandpa Tim, down to yours truly, we all must have been distracted when the good Lord handed out the dancing gene because we surely missed out.  Now I'm not saying we can't dance.  I'm saying we can't dance well.  OK, not even fairly well.  Sure, we can pull out rare moves at a family wedding, but in the end, video evidence verifies these were only haunting attempts at greatness.

Curiously, the Crowley wives have not been impacted by the same genetic disorder. They glide from one end of the dance floor to the other and shift from one dance style to the next without missing a beat.  Despite this clear superiority, they have put up with our shortfalls without a snicker.  Perhaps it is their way of keeping us on the dance floor while the other husbands remain glued to their chairs, or a simple way to bolster our pride.      

Fortunately, this disorder has passed by my girls.  As a complete fluke, it appears that in place of a gene essential for glycogen breakdown, my wife has passed on a fully functional dancing gene.  I noticed this early in their life as they seemed to have the ability to keep a beat much better than their old man, but I dismissed it as beginners luck.  Gladly, I was wrong.

As you have read on other blog posts, we are open minded to any and all ways to combat the effects of Pompe disease.  During our last doctor's appointment, we learned that in addition to swimming, the treadmill, and yoga, dancing is a good cardio exercise we should consider for the girls.  Learning this, we rushed out and bought the new Nintendo Wii game Just Dance 2. 

If you haven't seen this game, the definition is simple.  You stand in front of the TV with a Wii controller and try to reproduce the dance moves shown on the screen. While it seems quite easy, I learned three important lessons after my first attempt. First, this game is a great way for our girls to get some fun cardio exercise.  Second, the different dances give them a variety of exercises perfect for their arms and legs. Third, I never should have tried to reproduce Beyonce and Jay-Z's moves.  I thought I was bad, but not that bad.

The other night the girls were playing the game, and before I knew it a whole group of kids were in front of the TV dancing away.  There were the swimmers, the gymnast, the basketball players, the lacrosse players, and a couple Pompe girls all dancing together with no cares, only smiles.  Nowhere in the group was a trained dancer and nowhere in the group was a concern about muscle diseases.  It was just a bunch of kids, kicking off their shoes and leaving their inhibitions aside in favor of a little exercise and more importantly, a little joy.  

So, it is a fact that the Crowley men can't dance, and questionable if we can be taught. However, Emma and Maddie promised to teach me.  I don't expect any quick rewards, nor plan to try out my new Beyonce moves at the next family wedding.  But, what I plan to do is follow the lead of a few kids near to my heart, and I suggest you do the same.  When the weight of the world becomes a bit too heavy, and when your mind is filled with all the important things that must get done, set your inhibitions aside, kick off those shoes, and remember to...

Take a chance
You're old enough to
Dance the night away
Dance, dance, dance the night away

All the best, 

Credit to: Van Halen, "Dance the Night Away"

Wednesday, January 12, 2011

Walk Like A Man (and Woman)

Walk, walk, walk, walk...

He said just
Walk like a man
Talk like a man
Walk like a man my son
No one's worth
Crawling on the earth
So walk like a man my son

I am traveling this week with a colleague from Europe. He's in his 30's, full of energy and ambition, and was always the first one to jump at the late night dinners, the after party, and the paparazzi (kidding). However, since the last time I saw him he's changed a bit. The change is subtle and unless you've known him for a while you may not notice, but I saw it immediately. He now has a 5 month old daughter. A daughter, who has unexpectedly captured his heart and changed a person from one who loved to travel the world for business to one who can't wait to get home and be a Daddy.

Depending on who you listen to, becoming a man has many definitions. They may be graduating from a university, moving out on your own, starting your career, getting married, etc. There is no doubt that all of these are stepping stones and the result of each displays who you are as a person. However, I believe a boy only truly becomes a man the first moment he holds his newborn child in his nervous arms, looks into its eyes, and suddenly realizes, "Wow!". At that moment, a man is born and his reason for living is discovered. From that day forward, he begins the walk.

I've also seen this in the eyes of my nephew who recently had a son. While he lives far away, we have been able to talk with him and his new family through the magic of Skype. The first time we chatted with him from our home on the East Coast I saw the spark. Behind the sleepy eyes of a new parent was a pride and power that shined. When he held his son up to the computer screen, the boy I used to babysit could still be seen, but was now in the background.  A father has arrived, fully prepared to take on the world and Walk Like A Man.

On February 20th at 8 AM my family will be doing something special.  We will be participating in the MDA Muscle Walk at the King of Prussia Mall in King of Prussia, Pennsylvania.  Our team, Crowley Crusade, will walk laps inside the mall with many other MDA teams from across the Delaware Valley. We are committed to form a team of many walkers to join us that day and raise at least $3000.

To help accomplish this goal, you are invited to join our team and walk with us!  If you are unable to participate, please consider making a donation as every penny makes a difference towards helping the tens of thousands of people who live each day with neuromuscular disease.  You can donate or register to join the walk by visiting our team's site at:

If times are tough and you can't donate, please sign up and walk a few laps to show support not only for our girls, but for many children in our area who quietly fight their personal battles each and every day.  If you are far away, a simple note of encouragement on this blog would be greatly appreciated.

I cannot guarantee that you won't spend some money at the mall as I'm sure someone in my family will find something "on sale" once the walk ends and the mall opens.  What I can guarantee is for perhaps the first time, you will leave the mall richer than when you entered.  I promise you will meet other adults whose strength will impress you and children whose power will leave you inspired.  While not all of their legs will allow them to walk the distance, trust me when I tell you they will get there either on wheels or only in their hearts.

So whether you are a man or woman, have kids of your own, or are still building your future, the opportunity is there for everyone on February 20th to do something special.  If you're looking for me, I'll be at the mall hand in hand with my girls, my wife, and my son doing my best to show them what it means to ...

Walk like a man
Fast as I can
Walk like a man
Walk, walk, walk, walk


Credit to: Frankie Valli and the Four Seasons, "Walk Like A Man"

Wednesday, January 5, 2011


Nightswimming deserves a quiet night
The photograph on the dashboard, taken years ago,
Turned around backwards so the windshield shows
Every streetlight reveals the picture in reverse
Still, it's so much clearer

Nightswimming, remembering that night
September's coming soon
I'm pining for the moon
And what if there were two
Side by side in orbit
Around the fairest sun?

Growing up on Pritchard Street in the 70's came with a few perks.  We had plenty of kids to play with, flat neighborhood streets perfectly designed for long bike rides, open front yards for adventure, and just enough peculiar old people to fuel stories of mystery and intrigue late into the summer.  But, above all was the swimming pool. I'm sure there were pools all across the area, but for a little guy who's world revolved around a two block radius, we were the only ones and fortunate.

At age seven nothing quite matched the freedom of your own pool.  In was the ideal place to spend summer days with friends and family, evenings playing Marco Polo with all the neighborhood kids or an afternoon alone fishing off the diving board imagining each catch is a marlin in the deep blue sea.  While all those days were grand, swimming at night could not be matched.  

Nightswimming was a rare event enjoyed only when my older brothers decided to take a swim and promised Mom not to let me drown.  At that age being out at night without your parents was special, but nightswimming was an adventure. The air was cool, the water was dark with only one light shining through, and the sky above was full of wonder and magic.  Each night usually ended up in a series of crazy dives, scary stories, and exhausted kids dreaming until another day. 

Emma and Maddie started their own version of nightswimming a couple weeks ago. At doctor's advice, they began pool based physical therapy two hours a week.  During each session they complete exercises uniquely designed for them by the physical therapists at CHOP and our local specialist.  For Emma the focus is on the upper body, specifically her back muscles which are not getting enough movement and where the glycogen build-up is more pronounced.   For Maddie it's all legs because that's where Pompe has focused its efforts.  

The facility uses the Endless Pools technology which offers customized currents the girls can swim against just as if they were in a much larger pool.  The pool is big enough for several people, but luckily they have it all to themselves.  Just like their days at CHOP, they are side by side fighting, this time splashing instead of sitting with IVs. 

So far things are going well.  It's too soon to see any results yet, but the two hours in the pool are moving muscles that are usually forgotten and have added to their exercise schedule at home and school. With time we expect their strength to improve a bit and the glycogen buildup to lessen.  In the meantime, we will enjoy the heated room instead of the winter evenings and the time alone as a family far away from TVs and cell phones. 

It's clear that nightswimming is a bit different for me these days.  However, as I close my eyes, listen to the water, and the sound of kids laughing, I can't help but smile and remember that nightswimming can still bring wonder and hopefully just a bit of magic.

Nightswimming deserves a quiet night, deserves a quiet night


Credit: REM, "Nightswimming"

Old days fishing away in the pool.

New days in between exercises.