Saturday, October 6, 2012

She's A Rainbow

She comes in colors everywhere;
She combs her hair
She's like a rainbow
Coming colors in the air
Oh, everywhere
She comes in colors

Have you seen her dressed in blue
See the sky in front of you
And her face is like a sail
Speck of white so fair and pale
Have you seen the lady fairer

She comes in colors everywhere;
She combs her hair
She's like a rainbow
Coming colors in the air
Oh, everywhere
She comes in colors

Does she always run that way?

It seemed like an odd question, but then again everything about that day was odd. There I was, standing in the colorless halls of the Neuromuscular Clinic at Children’s Hospital of Philadelphia, listening to doctors and wondering how fast I could escape back to our quiet life. My logical side told me there was no doubt this was the right place to be, but somehow it still did not make sense. Somehow our lives took a detour we weren’t expecting and I was confused.

I was jarred when it came once again, "Does she always run that way?”

His question was clearly an indication that something was not right and I was afraid to answer. Fortunately, Donna spoke up and told the doctor that it was just the way Maddie runs and asked if something was wrong. He didn't have much to say, just noted something down and moved on to the next test. Once he was done, he laid out our situation. There were a couple things to consider, but Pompe Disease was the most likely candidate and later proved to be the diagnosis.

For those of you who are new to this blog or don't recall the details, Pompe disease is a rare, inherited neuromuscular disorder that causes progressive muscle weakness. It is caused by a defective gene and results in a deficiency of an enzyme which leads to excessive buildup of glycogen in the muscle tissue. For us, it was a foreign word that meant nothing, but soon proved to define much of how we lived our life and what occupied much of this author’s mind.

One of the interesting impacts of Pompe is on exercise. It was recommended that our girls stay away from exercises which might negatively impact muscle breakdown and steer towards those which would not. The thought is that the breakdown and rebuilding of muscle which is inherent in things like weightlifting was not good as the rebuilding would not occur as in a normal person. So, we were steered towards limited, low impact exercises like swimming. To the girls who always seemed “to run that way” it wasn’t too much of an issue, but to me it was. You see, I love to run. I love the freedom of running through our town, the energy of a race, and the thrill of crossing the finish line. It may sound silly to some, but I hoped I could share that love with my girls, but due to Pompe it was not meant to be … or was it?

A number of months ago Donna was cruising through status updates on Facebook when she came across this thing called The Color RunTM. When she clicked on the website it said the following:

“The Color Run™ is a unique experience focused less on speed and more on crazy color fun with friends and family. Color runners come from all different ages, shapes, sizes, and speeds; but everyone toeing the start line has a blast. Whether you are a casual morning mall walker or an Olympic athlete, the 3 miles of The Color Run™ course will be the most memorable and colorful run of your life!”

She then watched the videos on the site which showed runners, but not the way she expected. It showed people of all stripes – fast and slow - covered in bright colors, laughing, dancing, and celebrating. They were full of energy, celebrating their freedom, together. Perhaps, she thought, this was the run for us.

By chance this was the inaugural year for The Color Run in Philadelphia so Donna signed up our whole family and marked it down on the calendar. We were not sure how our girls would last walking three miles, but it did not matter. It did not matter because the thrill of this run was not with the time at the finish, but in how long you could enjoy the process. It was perfect.

As the days drew closer I discovered that Carter and I would not be able to join the race due to another event so we passed our tickets onto the girls’ friends. While I wished we could have enjoyed the event together, I was glad it would be infused with the additional energy of their friends.

On race day, I stood on the sidelines of Carter’s game in Princeton and received text after text with photos from the race. Each one showed the girls covered with greens, blues, pinks, and purples and most importantly … smiles. When I arrived home later that evening I was greeted with stories on how much fun it was during the run and what a great party they had after thousands of people crossed the finish line. I was told there were runners and walkers, old and young, and all had a grand time. Finally, much to my delight, I was told we needed to do it again next year and that I needed to attend so I could cross the finish line with them.

I’ve checked the site and was pleased to see the race is headed back to Philly in 2013. We’ll be signing up as a family again and I hope more of our friends will be able to share in the fun. Either way, I’ll be thrilled because one my hopes will come true. I will finally be able to cross that finish line hand in hand with my girls.

Over the years I’ve learned that life can place you on detours you weren’t expecting. However, if you keep looking forward you may find the road you're on is much better than the one you expected. In our case, colorless CHOP turned out to be a haven of comfort and the answer to "Does she always run that way?” was no longer greeted with confusion.  Although I knew it all along, it just took a little race to remind me that doesn't matter whether they run, walk, win, or finish.  It doesn't matter because wherever they go their inner color can be seen from far and wide.  All you have to do is stand back, look in their eyes, and you realize...

She’s A Rainbow!!


Credit to: The Rolling Stones, “She’s A Rainbow”

If you are interested in this run in your town, check out their web page at

Here are a few pictures of the adventure.

Donna and the girls at the starting line.

 Maddie and her friends before the color (minus the cool matching socks).

Emma and her friend post race.

After the race ... smiles, laughter, and celebration.  All before 9 AM!


  1. Great read as always. Love from down under

  2. Love This story !!! Beautiful~~ xo to all