Going around Winston with Errol is like being in a rock star’s entourage (I guess).
People I’ve never laid eyes on come up and ask Errol how he’s doing (I always answer for him, which may be a bad habit to get into. Then again, if I perfect my ventriloquism it could lead to some interesting conversations.) Errol is definitely one of the biggest celebrities in town and it's rare we go out without a fan stopping him to say hello.
Recently, on a trip out of town, we stopped for lunch at a cafeteria. As we snaked through the line towards Errol’s first encounter with Jello (he loved it!) many of the patrons smiled, waved, and stopped to talk to him. As a sweet old grandmotherly woman smiled at him, Errol stared blankly into space. I threw my voice and Errol broke his silence, “What are you looking at you, you old bat?” The woman stared back in disbelief and Errol added, “Heard of Botox, Granny?” Errol smiled sweetly.
OK, so I didn’t really throw my voice. One day.
Back at the cafeteria, as our fellow patrons nodded and smiled, I noticed one older woman who kept wistfully looking at Errol. As she passed us she smiled and said, “He’s special.”
“Yes he is.” I said.
“I had a special boy.” She sighed. Her eyes moistened.
“What was his name?”
“Matthew.”
She looked intently at Errol.
“How old was he when he passed away?” I asked.
“He was 32.”
We looked at Errol. She thought for a moment.
“How old is he?”
“Three.”
“They really are so special.” She said.
“Yes they are.” I agreed.
We looked at each other and I looked at her husband who couldn’t look at Errol. She looked back at Errol and then they were gone.
As we finished our meal, I noticed them sitting a few tables away, not talking, stealing glances at Errol.
The world can be so heavy, but it’s lighter when there are others to share the burden with you.
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”.
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.
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.
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'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.
