Moving Closer

The last time Errol had open-heart surgery he was in the hospital for six weeks. Despite the joys of hospital food, those six weeks were the worst month and a half of our lives. I doubt it was much fun for Errol either. During his recovery, Errol had so many infections, collapsed lungs, and (still) inexplicable medical problems that Dr. Hines nicknamed him, “Curveball”.

During that horrible summer, there were a number of times that little Errol teetered on the edge of life. It’s shocking to think that if things had only gone ever so slightly for the worse, we wouldn’t have known the joy that Errol brings us (he shrieked for joy for almost an hour straight last night). We feel like the luckiest people in the world to have both our boys.

Last week, we were told to prepare for a long recovery in the hospital. We hope they were kidding, but cardio-thoracic surgeons aren’t really known for their practical jokes about post-operative healing. Although long wasn’t precisely defined, we hope it means less than six weeks. We won’t count on it. 

Errol doesn’t have any idea what’s about to hit him. Which, in a way, is comforting, but in another way is horribly troubling. I can’t bear to think about sweet innocent Errol smiling up at the doctor who is about to break his sternum and crack his ribs.

Why do the innocent suffer? 

It hasn’t been an easy road for Errol. If I could have one wish it would be to heal Errol.

Errol's surgery gets closer and closer. The only thing propelling us forward is the desire to get through the suffering.

Open heart surgery part 3

We've just learned that on the morning of Thursday, August 6, Errol will have his third open heart surgery. Wish him well!

Can You Sing?

Errol’s favorite book is the Nobel Prize winning, Can You Sing? By Lisa Lawston, illustrated by Ed Vere.

The entire text consists of:

Please sing me a song.

Rrraaahh!

Rowf!

Quack, quack!

Ork, ork, ork!

Ribbit!

H-Hoo! Moo!

Hiss!

Ow-ooo!

Snort!

Thank you. Good night!

If I asked Errol to construct his perfect day it would go something like:

Milk, Can You Sing?, milk, Can You Sing?, banana, Can You Sing?, Can You Sing?, banana, Can You Sing?, Can You Sing?, milk, nap, milk, Can You Sing?, milk with a simultaneous reading of Can You Sing?, grab hair, banana, Can You Sing?, Can You Sing?, Can You Sing? , milk, sleep, dream about Can You Sing?

Can You Sing? is always wonderful to read (three time in five minutes, tonight) and Errol’s reaction is immediate, loud and joyful: squeal!

 

Errol's brother Owen is almost six and he is growing up.

Sunday was a cool and overcast afternoon. Cary, Owen, and I sat around the living room table and played Uno. Owen won three times. It was one of those surprising moments you want to stretch on and on (these moments are never planned). It’s this joy that I hoped for when Cary and I dreamed of parenthood. And as Owen grows up, there are more and more of these moments.

Errol is not growing up. Although he is three years old, in most ways he is still an infant (and probably always will be). Errol brings so much joy into our lives (Rrraaahh! Snort!), but he also brings guilt, sorrow, limitations, anxiety, and he’s getting harder and harder to lift (38 pounds!) Having a severely disabled child with a deadly heart defect isn’t all it’s cracked up to be.

It’s good to have an anchor in a storm, but sometimes I want to sail out of this little cove into the wide and beautiful sea.

 

 

 

Errol Surgery #3

Errol's third open heart surgery has been rescheduled for the second week of August. We'll keep you updated as we learn more specifics about the time and date. Thanks for your thoughts.