Editor's NoteNed's own resilience and perseverance had already made him a terrific athlete and a medical miracle when Kasey, a 5 lb. Capuchin monkey trained to be a service animal, arrived.
Kasey's real gift, as Ellen and Ned and their large family discover, goes beyond her service training. Kasey's empathy enables her to understand far more than she has been trained to know.
At first, Kasey was more burden than aide. She was, you see, a bit of a diva. She was also a monkey in search of her place in the hierarchy of a family of five kids and two dogs.
Kasey helps with remote controls, bottles, dvd insertion and many, many other of the tasks of daily life. But her real gift, as Ellen and Ned and their large family discover, goes beyond her service training. Kasey's empathy enables her to understand far more than she has been trained to know. She provides emotional as well as material support and actively lets Ellen and Ned know she is there for them.
What follows is an excerpt from the book that takes place before Kasey arrives, over the first Christmas after the accident. Ned has returned to the hospital because Ned's pain is so severe that it has to be controlled there.
We decorated Ned’s hospital room with a tiny tree and Christmas decorations, and piled his gifts around it. Little things like CDs and T-shirts. He couldn’t make use of much else. Happy faces fi rmly in place, we went to Ned’s room on Christmas Eve, pretending everything was merry and bright, but ghosts of Christmas past filled the room. Our family traditions were all about food and fun, games on TV, a festive round of house- to- house visits with our friends. We always ended the day reading " ’Twas the Night Before Christmas," and I got everyone involved, reading each line and pointing to one of the kids to supply the last word. By the time they were out of elementary school, they all knew it by heart, so most of the confusion and fun happened when one or another of them got caught texting or dozing off and then there’d be no end of razzing.
Jake spent the evening with us at the hospital, then went off to visit friends. Megan and Ron went home, and the girls trudged up to bed. Standing in the silent living room– turned–hospital bivouac, I decided I wasn’t about to let go of our small, important tradition.
"Girls! Get out of bed."
Sleepy groans could be heard overhead.
"Come on! We have to do ‘The Night Before Christmas,’ " I insisted. "We’ll conference Jake and Megan in on the phone."We always ended the day reading " ’Twas the Night Before Christmas," and I got everyone involved, reading each line and pointing to one of the kids to supply the last word. By the time they were out of elementary school, they all knew it by heart, so most of the confusion and fun happened when one or another of them got caught texting or dozing off...
"You’ve gotta be kidding," Maddie harrumphed on her way down the stairs. "Mom, it’s too late. I’m tired."
"We’re doing it anyway," I grimly informed them. "It’ll be fun."
Jake and Megan were less than thrilled to be interrupted while doing what ever people do at eleven o’clock on Christmas Eve, but I forged ahead, dragging everyone with me line by line.
"Twas the night before . . ."
"Christmas," someone said as if it were a wake.
"And all through the . . ."
There was a long silence, a noticeable hole in the voices.
Again that realization of foreverness swept over me, and now it was starting to sink in with the rest of the family. I’d been living with it for a while, but the kids weren’t used to it yet. Seeing Ned away from home on Christmas Eve— so dependent, so helpless, in that sterile white setting— had brought the painful reality into full, unobstructed view.
Your life will never be the same, Judy had said, but tradition allows us to pretend there’s something unchangeable in a world that spins out of control. This little ritual left over from their childhood may have seemed silly and simple to my kids, but without that anchor, I didn’t know where we might drift— or drift apart.
On Christmas morning, I went to the hospital.
"They want a discharge plan right after the holidays," I said. "As if a person gets to decide these things. It’s all about insurance really. And what the doctor says."
"Which is what?" asked Ned.
"He wants you to go around the corner to Spaulding Rehabilitation Hospital. He decided you need more rehab before you go home."
I was grateful for that. It lifted the burden of having to say it myself.
"It’s not a defeat," I told Ned. "Just a detour."
"You should probably get back," he said.
I nodded and touched his cheek. As I left his room, I glanced back in time to see him pick up his right hand to wave good-bye.
"Ned!" I rushed back to his bed. "Did you do that on purpose?"
"I’ve been visualizing those arm curls," he grinned. "All of a sudden, I actually brought up my arm. Watch. I think I can do it again."
And up it came. I crowed and clapped my hands together.
"Wonderful! Do it again, do it again."
But he couldn’t. It went away completely after that, and I was the only person who’d seen it. We were both simultaneously thrilled and disappointed. The roller coaster ride continued.
"One step forward, two steps back," I sighed.
"Yeah, but then there’s another step forward," Ned reminded me.
I squeezed his arm.
"Merry Christmas, Ned."
"Merry Christmas, Mom."
