Monday, June 27, 2011

Once In A Lifetime

And you may find yourself living in a shotgun shack
And you may find yourself in another part of the world
And you may find yourself behind the wheel of a large automobile
And you may find yourself in a beautiful house, with a beautiful wife
And you may ask yourself-Well...How did I get here?

Letting the days go by, let the water hold me down
Letting the days go by, water flowing underground
Into the blue again, after the money's gone
Once in a lifetime, water flowing underground

Wikipedia defines déjà vu as the feeling that one has already witnessed or experienced a situation. While I don't believe in previous lives, old souls, and all that stuff, I must admit to having that déjà vu feeling before.  While strange, it can be somewhat comforting especially when you try to figure out what to do next.  If I have been here before it must all work out, right?  Unfortunately, I could not find a definition for the feeling you have when you realize you have just driven a few miles on a familiar highway without thinking.  Or, that feeling when you are taken back by sad news you never expected.  When these times happen, you take a look over your shoulder and say, “Well...How did I get here?”  Last Saturday was such a day.

I fondly remember summer camping trips when I was young. Each year, my mom would load up the tent trailer with food, my dad would tie 112 bikes to the top, and we were on our way. Sometimes, we would take a long drive into the woods and spend our nights shooing away the mosquitoes, but most times we would find ourselves at a seaside campsite a few short hours from home. Fortunately between our large family and our cousins, there were always many kids to play with and plenty to do. Each morning began by sitting at the picnic table for cereal, each day filled with adventure out in the water, and each night finished around a campsite listening to the adults talking about the old days. If you were to drive by our site during that week you would not have seen anything special, just an old tent trailer and a tent or two.  It may not have been anything impressive to the eye, but I guarantee you that for a little boy, it was magical.

A few months ago the girls were invited to attend the MDA's local summer camp. In between appointments at CHOP, the rep told them all about the fun they would have, the friends they would make, and the gentle feeling of being with other children all leaving their daily concerns behind.  She said others raved about their stay with terms such as "best week of the year", "well worth it", and "Once in a Lifetime!"  We are not much of a camping family these days. We have spent a weekend or two at the local KOA campground, but not regularly and never in a summer camp environment. As our family resides on the west coast, we tend to spend our summer vacations there, far from tent trailers and far from the Pennsylvania woods. So, when they heard about it, they jumped at the chance.

Last Saturday was drop-off day for the campers. We had prepared over the previous weeks by gathering all the necessary supplies and speaking with the girls about the week ahead. We knew this would not be the camping trip I remembered as a child for a couple reasons. First, we would not be there with them and second, they would be surrounded by kids facing sometimes similar and sometimes much more severe muscular challenges than theirs.  We wanted them to be prepared for what they may see and what they may feel. 

As any parent, it is always a balancing act between preserving innocence and opening the door to the real world. This has become tougher for us over the past year or so as we found ourselves dealing with issues we never expected.  Our kids continue to amaze us with their strength and commitment, but we did not want to leave them on their own, separated into difference cabins, without preparation. There were times they were 100% committed to go and a short time when they were worried.  What I found interesting is they did not resolve this concern by only speaking with us, but by discussing it themselves. While we were busy doing dishes they were upstairs discussing their fears and decided to face them together.  When I was their age camping, I was busy trying to decide between Sugar Smacks or Captain Crunch, never anything like this.  When we heard them we knew it was time to let them walk the balance beam on their own.

When we drove in and parked our car, I saw what I expected: a few kids in wheelchairs, a happy group of volunteers, and a beautiful campsite. There was a grand hall, gymnasium, a pool, and a series of cabins. I told myself to relax; this is going to be great!  But when we entered the registration hall, it hit me.  Suddenly, we were surrounded by doctors and nurses, children of all ages with severe muscle disease and weary parents carrying boxes of medication that their kids must take each and every day. I had met these people before at events and had spoken to them about our story, but this was different. This was not my story.  This was theirs and I felt like a foreigner.

I couldn't stop asking myself how we got here and where the days had gone. It seemed like only yesterday that I was walking Emma to first grade with a huge smile and without a care in the world. Everything was going great. It was the American dream…three healthy kids, a great marriage, good job, and a new house. I never could have predicted this one.

In the middle of my irrational moment, I caught a site of the girls’ faces. They were laughing with their counselors and smiling for pictures with the other kids. They did not feel like foreigners, they felt like they belonged.  I realized then that all the while we had prepared the week for them, I had not taken a moment to prepare the week for me. I had not taken the time to realize that while this would not be the seaside campground I remembered as a child, the magic of camping was still all around.  This was their magic.  The one they would remember for years to come.

I don’t think my experience is unique to summer camps, muscle disease, or Pompe.  Each of us has had our own moment when we look over our shoulder or into the mirror and wonder why.  This could be over the illness of a child, loss of a parent, a job, or any other thing that was truly unexpected.  Each of us has our own cross to bear and the beauty of life comes from how we live with it.

We did not hear from them all week. This was not because they were discouraged from calling home, but because they were too busy having a blast! Unfortunately I was not able to be there for pick-up day, but Donna told me there were lots of tears, lots of hugs, and lots of promises to come back next year. As soon as they got home, they had several new Facebook friends and even more stories to tell. When I asked them to look back and sum up their week, the message was clear. It was...

Once in a lifetime!

Stay positive,

Credit to: The Talking Heads, "Once In A Lifetime"


  1. Great post as usual.
    Love from downunder to all

  2. You could tell it was a great week from the looks on their faces in the pictures. Great!

  3. ahhh...saaame as it ever was. Great posting and really glad the girls had a great time. I too remember those days of packing what seemed like 100 kids into the station wagon and heading to the beach, or out to see my relatives. Dad would smoke cigarettes in the front seat and the smoke would waft to the back of the car and make us all dizzy. Only to be matched by the years he pretended to quit smoking by chewing tobacco and when he would roll down his window...the person who sat behind him would have to roll theirs up real real fast....aaah..good times. good times....

  4. Same as it ever was
    Same as it ever was