Skip to main content

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.     

Comments

  1. I am glad that Maddie's last ride at Hershey was the best.

    ReplyDelete
  2. “God places the heaviest burden on those who can carry its weight.”
    Reggie White

    ReplyDelete
  3. You've made me cry - what wonderful friends! Sounds like a wonderful day all around, especially the end. Love you guys.

    ReplyDelete
  4. Short and simple. WOW.

    ReplyDelete
  5. A shout out to my husband! Your blog entries about our life bring me to tears every time. Not sure how we got here, but I am positive that I never could see myself sharing this world with anyone else!
    Love you forever,
    d

    ReplyDelete
  6. Good stuff -- even in the midst of pain and anxiety, goodness is there. So glad you are feeling some of that! We are praying for all of you. The Williams

    ReplyDelete
  7. You've got me crying again, too, Matt! DANG IT!!! You give me hope for the future when I read about the sweetness of such friendship.

    ReplyDelete
  8. I'll carry those two magnificent young ladies anywhere!!! Love to all!

    ReplyDelete
  9. When compiling his great dictionary, the young Noah Webster travels to the Himalayas, where he climbs to the cave of the world's wisest man. "O, great sage," he says, "tell me the meaning of life." The sage sits Noah at his feet and, with great solemnity, commences to unfold the meaning of life. When finished, he places a hand on the young man's shoulder and says, "Do you have any other questions, my son?" Noah flips a page in his notebook and says, "You wouldn't know the meaning of lift, would you?" ~Robert Brault

    ReplyDelete
  10. Life is mostly froth and bubble,
    Two things stand like stone,
    Kindness in another's trouble,
    Courage in your own.
    ~Adam Lindsay Gordon

    ReplyDelete
  11. Fahrenheit is the temperature scale proposed in 1724 by, and named after, the German physicist Daniel Gabriel Fahrenheit (1686–1736).

    Not to be confused with
    "Gesundheit" (the German word for "healthiness")

    God Bless you Crowleys!

    ReplyDelete
  12. Carry On.
    Love is coming.
    Love is coming to us all.

    ReplyDelete
  13. “Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. Christopher Robin to Pooh”
    A. A. Milne

    ReplyDelete

Post a Comment

Popular posts from this blog

The New Adventure

Madeline Jane Crowley is an 11 year old girl living in suburban Philadelphia who was diagnosed with Juvenile Pompe Disease on November 18, 2009. Maddie is a vibrant child filled with humor, energy, and wonder. She believes in her family, friends, doctors, and the magic that can happen when people dare to believe. Her care is being lead by Dr. Bonnemann MD, Asst. Professor of Neurology and Pediatrics, at Children's Hospital of Philadelphia (CHOP), and includes a team consisting of a Genetic Counselor, Physical Therapist, Clinical Trial Specialist, Nutritionist and many others. Maddie will begin treatment with Genzyme's Myozyme drug in January 2010. What this means, we don't know. But we do know that our family and loved ones will support her every step of the way. Whatever happens we will fight for our daughter and will succeed in helping her and many others battling this disease. All for one, and one for all! Sincerely, Matthew and Donna Crowley

July's Forecast...Reduced Snowflakes

The night before we moved from our Northern California home a friend who learned we were moving to the Northeast asked me a question.  "Do you know it snows there, even when you don't want it to?"  I laughed it off speaking instead about the beauty of the Northeast, my new job opportunity, and of course the cheesesteaks.  While I thought it was a humorous question at the time, I must admit I repeat it each winter as I gear up to clear the snow from the driveway.  Seven years after living on the east coast I've realized I have two favorite parts of a winter storm.  The first is watching a heavy snowfall where the snowflakes are so large and distinct you can reach out and touch the magic of winter.  The second is when that last bit of snow is washed away by a gentle spring storm clearing the way for warm, sunny days.  Sure there's all that other "stuff" in winter that's cool too, but when it comes to co...

With a Little Help From My Friends

Oh I get by with a little help from my friends. Oh I'm gonna try with a little help from my friends. With a little help from my friends… Our long awaited appointment at Children’s Hospital of Philadelphia (CHOP) on January 6, 2010 has finally passed and was well worth the wait. I’ll apologize ahead of time for the length of this post as I summarize a five hour appointment. Yes, five hours. First off, we finally met with all our new friends on Maddie’s Team. I will name them here because we will use the names often in the future posts. Get ready…the list is a bit long. The CHOP team includes Dr. Bonnemann and Dr. Finkel in the Neurology Department, Dr. Mayer in the Pulmonary Department, Livija the Genetic Counselor, Allan the Physical Therapist, Donna the Dietician, Joan the liaison to Genzyme and Alan, Social Worker/Coordinator. The extended team includes Dr. Barry Byrne at the University of Florida; the folks at Genzyme including Dr. Edward Kaye the Vice President for Clini...