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.