Monday, May 16, 2011

Stand By Me

When the night has come
And the land is dark
And the moon is the only light we’ll see
No, I won’t be afraid
Oh, I won’t be afraid
Just as long as you stand, stand by me

I haven’t written too much about our son Carter.   Maybe it’s because he has enough to manage as the big brother and maybe it’s because I wanted to keep him away from the attention.  But, after his eighth grade chorus class sang Stand By Me, a post stuck in my head.  Whatever the reason, today is his day and it is well deserved.

Carter has the good fortune and the misfortune of being the only boy stuck between two sisters.  The good fortune part the deal is threefold.  First, he doesn’t have to compete with his brothers for the biggest eater, strongest wrestler, or best joke teller like I did (and lost on all accounts).  Second, he doesn’t have to share Dad’s attention for his lacrosse and football games.  And third, he is close enough in age to eventually date both of his sisters’ friends two years older and two years younger.  From the viewpoint of a guy whose only sister was out the door by the time he knew females existed and whose brothers were more interested in heavy metal and car racing; this is not a bad position to be in.

The first part of the misfortune is not much different than the challenges any boy who has one sister knee deep in teenage land and another at the door waiting to enter does.  These include sharing one bathroom, dealing with crazy emotions, too many shopping trips, and lots and lots of hair products.  Fortunately, he has a great sense of humor and much better hair than I ever did.  I can’t think of a day when we haven’t laughed as a family listening to one of his stories, one of his jokes, or watching him flip his hair over and over until the right moment when the flow was just right.

However, when you peel back the misfortune side further you’ll find it’s a bit more complex.  He sits between two girls with a genetic disorder he doesn’t have.  He sits between two girls whose Pompe disease management has transformed a normal home into an insurance processing center, a diet and exercise haven, and eventually a home infusion wing.  And, he sits between two girls and sometimes quietly worries what the future will bring.  This last point became most evident in a discussion we had where he expressed concerns about the future.  He wanted to know what the years ahead will bring for his sisters and what he will need to do.  He wanted to know how strong he would have to be when we were no longer here to help them, guide them, and advocate for them.  He’s convinced that one day he will need to stand up for them.  He just wanted to know how tall he would have to be.

As you can imagine, this is not the kind of conversation you want to have with a fourteen year old boy.  Fourteen year old boys should be spending their time thinking a little bit about school, a little bit about sports, and a little bit about girls.  If they are thinking about their future it should be planning out whether they want to be a professional baseball or football player, not caregiver.  I guess his feelings are not unique out there.  I’m sure there are quite a few brothers and sisters who watch their siblings struggle along and wonder why not me.  They wonder about the future and worry what it will bring for their family.  I try not to get sad by much, but this makes me sad.  A parent’s job is to share the joy of their children and carry their burdens when necessary.  This is what my parents did and this is what we will do.  Our children are not meant to worry about such things.  Our children’s job is to be children.

I’ve thought a lot about wishes these past two years.  When I was a kid, I wished big each time I blew out the birthday candles.  Occasionally, I even asked God for a new bike or G.I. Joe while everyone else at church appeared to be in serious prayer.  Heck, why not try since the big guy was listening anyway?  These days my wish is a bit more focused.  My wish is when my girls are old and gray they will sit down with their brother, look back on all this Pompe talk, and wonder what the fuss was all about.  They will be healthy as can be because some great treatment or maybe some great cure will have made Pompe as serious as indigestion.  They will look back, think about their long past struggles and remember that when the times were tough and they needed support, their brother was there to hold their hand, pick them up, and tell them…

You won’t cry, you won’t cry
No, you won’t shed a tear
Just as long as you stand, stand by me

All for three and three for all!

Matt Crowley

Credit to: Ben E. King, “Stand By Me”


  1. Wow! I've always been impressed at how supportive Carter is. Can he be my brother too?

  2. Matt, I hope your wish comes true! Our kids shouldn't be troubled by such things.....but many are and we know life isn't fair. I'm very impressed by how all three kids are handling this, and you all are very lucky to have each other!

  3. Awesome post. We can't forget that these rare diseases affect everyone in our worlds. It's not just the obvious ones that are touched. Go Carter!

  4. Well said Uncle Matt...GO Carter!! Emma and Maddie are lucky to have such a selfless, caring, good-lookin brother! Love you all! xoxo

  5. Wow. The positive blogs you write are just mind blowing. As always our love to all

  6. I think Carter is a little like Cory Feldman

  7. Carter is a dumpster diver