Monster in the Family

Mo, Rocky and I spent this past weekend at the Center for Courageous Kids in Scottsville, KY.  It was a retreat for heart kids and their families, recommended to us by Ry’s cardiologist.

Scottsville, Kentucky: home of the VERY FIRST DOLLAR GENERAL STORE.  It’s huge.  It’s a store.  It’s all for a dollar.  Or something.

I went into this weekend with an underlying anxiety about meeting all those kids with heart defects.  The heart monster that lives in the dark cave of my deepest insides that always gnaws on me might pop out and get me.  Seeing all those kids with their scary heart problems sounded … scary. As soon as I got there I put up the defenses.

What happened instead was that I met this lovely, charming little five-year-old boy with curly blond hair and a devilishly charming, Elvis Presley-with-baby teeth grin.  Defenses are useless against such cuteness.  For the sake of top-secret code names, we’ll call him L’il Dude.  His monster?  The kid had a heart transplant.  That’s, like, the scariest heart monster there is.  Transplant is the last resort, the thing they do when there’s nothing, just absolutely nothing else they can do to save your life.  When I found that out, I couldn’t help but just gaze at him in awe: L’il Dude had it so bad, he needed a heart transplant.  What was formerly someone else’s ticker is in that little chest, ticking away.

We became friends with L’il Dude’s parents.  They’re regular folks, easy to talk to, no airs, funny, nice people.  They don’t seem to have monsters lurking in their insides.  How could they?  Their monster lives with them, eats dinner with them, gives anti-rejection meds with them, goes to cardio visits and camps and kindergarten drop-off with them.  L’il Dude’s heart problems can not be hidden away like a secret you don’t want to tell yourself.

Even with Tetrology of Fallot, Ry’s heart problems were the mildest of any of the kids we learned about there.  The stories are heart stopping (no, I didn’t just say that).  Most have had multiple surgeries, like seriously multiple; one little girl has had 15 heart caths.  When Ry has her pulmonary valve replaced, she’ll have to have a heart cath – where they go in through an artery and put a little stint in her heart.  It’s pretty dangerous.  That little girl had 15.  And she’s still here on Earth, driving her mama crazy.

L’il Dude and his mom are coming to Louisville for some tests at Kosair Children’s next month.  They’re going to come stay with us during their visit.  I might just see about going with them to the hospital, as support.  I’m so glad we went this weekend.  My monster’s sitting next to me on the couch, reading over my shoulder.  He says to say hi.

Whitney Lee’s Monster Hearts, Women and Their Work, Austin, TX


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