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"