Until I Say Good-Bye (3 page)

Wesley

A
fter that trip, it would take me a while to retrain Wesley that we don't usually swim in clothes. Not near as long, though, as it took us to get him to wear a swimsuit in the first place.

Which I suppose I should explain.

Wesley was my third child. I was thirty-six when I had him, and I knew he was my last. Yet when the doctor offered to tie my tubes during the C-section delivery, I declined, not wanting that period of my life to be over.

I appreciated his infancy, even the sleepless nights, as only an experienced mother can. Wesley was clingy, which I loved. If he fell asleep on my breast, I'd stare at him for an hour.
Remember this!
I told myself over and over.

He didn't crawl much, unlike Marina and Aubrey, but he started talking early. By the time he turned one, Wesley was saying whole sentences, like “Let's go see the hippopotamus today.”

“He's a genius!” John said.

As we realized later, he was imitating sounds. He had no idea what he was saying, or even that he was using words.

His behavioral issues started at three. He slammed doors over and over. Flipped light switches on and off compulsively. Ignored everything John and I said. I used to bang a pot behind his head to see if he could hear, he was so oblivious to our voices. He always jumped.

The situation reached a head that Christmas, when we took the kids to a fancy mall to see Santa. There were Christmas lights, Christmas trees, giant snowflakes glittering on strings, hundreds of kids and shoppers, at least two competing sets of Christmas carols . . . and Wesley fritzed out.

We were waiting in the long, long Santa line, and he could not stand still or stop screaming. John and I walked him around and took him into stores. No good. Wesley tried to climb into the fountain.

We gave up and dragged the kids to our minivan, all three now complaining. I was a smoker, but I only smoked a few cigarettes a day and rarely in front of the children. After an hour of Wesley's behavior, though, I was at my wits' end.

“Mom, what are you doing?” yelled eight-year-old Marina when she looked out of the van and saw me smoking.

“Mom!! You can't litter!” Marina hollered.

I picked up the butt and threw it on the van floor. Wesley was screaming and struggling so much, I sat on the floor at his feet to comfort him.

We were halfway to the next, more subdued mall when we smelled smoke. The cigarette butt was smoldering on the carpet of John's company car.

We screeched into the Palm Beach Mall: me beating out the smoking carpet; John furious and cursing; Marina whining and snapping at a forlorn Aubrey, “There's no Santa, stupid”; Wesley berserk.

We trundled the kids across the semi-deserted mall to Santa's “Wonderland.” No line, but Santa was going on break. The elf tried to stop us, but Santa looked over at our family and said, “No, no. I'll take this one.”

John and I pushed Aubrey up with one hand, trying to control Wesley with our others. Aubrey was five, a little shy, with a lisp. He stopped short, turned to John with a confused look, and said, “Daddy, why is Santa bwown?”

That bwown Santa smiled. He had more Christmas spirit than all of us put together.

After the holidays (a series of disasters), I insisted on taking Wesley for an evaluation. I remember the psychologist saying, “He looks at you. That's good,” and me thinking, Oh shit!

The psychologist called us back to her office a week later. There was one soft light and a box of Kleenex by the sofa. “I believe Wesley has Asperger's,” she said.

Again, I was clueless. “What's Asperger's?”

“It's a form of autism.”

I reached for the Kleenex, already crying. That was and shall remain the worst day of my life. I still can't drive past the building where Wesley was diagnosed.

Two years later, Wesley had made tremendous progress. It took a lot of paperwork and planning, a lot of long nights and phone calls, but I had fast-tracked Wesley into the local pre-K program for children with special needs at Meadow Park Elementary. The staff worked miracles, tamping down Wesley's odd behaviors, focusing him to learn.

He entered the regular kindergarten there in 2009. The orientation was held in the library, about a month after I noticed my withered hand—and a week after I first heard those three letters: ALS.

As the teachers talked, most of the kids colored quietly beside their parents. One child even appeared to be taking notes. Wesley scampered around the library, pulling books off the shelves and egging on another little boy to chase him.

My leg muscle started quivering. My ankle was propped on my knee, and I saw my calf twitch, a primary symptom of ALS.
New York Times
writer Dudley Clendinen, who died of ALS, described these twitches in the most beautiful way, “like butterflies fluttering underneath the skin.”

I clenched the muscles to stop the shaking. But when I unclenched, the butterflies returned.

“Mom,” Wesley called in his loudest voice. He always used his loudest voice. “Mom! Mom!”

I smiled. Sure, Wesley was pulling books off shelves at kindergarten orientation. But he was also asking another child to play. Yes, in the wrong setting, at the wrong time, and way too loud, but Wesley was asking. I felt so happy for Wesley in that moment, so optimistic, that nothing in the world could bring me down, including a twitchy calf.

“It's Google twitches,” John said that night. “You read about ALS symptoms on the Internet, and now you are experiencing them.”

It's going to be all right, I told myself. Wesley is going to be all right.

Animals and Expectations

I
n August 2010, we adopted a dog. In many ways, it was a responsibility I didn't need. My muscle problems were spreading, and I was still working full-time while raising three energetic kids.

But Marina and Aubrey kvetched constantly about not having a dog. Not having a dog and not having cable, in that order. The horror!

“It's just not normal, Mom,” Marina complained.

“I have a fish, Mom,” Aubrey said with a sigh. “That is not a real pet.”

And Wesley, poor Wesley. His behavior had improved, but the little guy remained distant and disconnected. He talked nonstop, but never a conversation. He could watch over and over his beloved
Backyardigans
episodes, but he rarely expressed emotion, love, or affection for anything aside from his little stuffed Piglet.

Hugging him was much like hugging a tree.

“You have to find a way into his world,” the doctor had said when she diagnosed him.

We live close to a small zoo. For years, it had been Wesley's favorite outing. The animals didn't require him to look them in the eye or order him around. He drew humans as stick figures with bubble heads, but even at six years old he drew extraordinary pictures of dolphins and dogs and bears. Animals, I knew, made Wesley comfortable.

The dog, I told myself, was a gift for him.

I didn't admit how much I needed the distraction. Or how much I craved the attention of an animal. I just thought: the more affection around the children, especially Wesley, the better.

Enter man's best friend!

It had been a decade since I had a dog, a fifty-pound Rottweiler mutt, Alva, a stray my friend Nancy and I took in during grad school. Alva had a host of quirks from street life. She ate everything, including garbage, shoes, and felt-tip markers—and routinely excreted a steamy pile upon the one square yard of carpet in our house.

She got cancer and had to have her leg amputated. You have never seen a happier three-legged dog than Alva.

But in my condition, rolling the dice on a street mutt like Alva was not an option. And puppies, they are like babies, right? I wasn't doing that again.

Thus began the search for a dog that needed a home, but already knew how to behave in one. A real pet for Marina and Aubrey. A friend for Wesley.

A comfort for a mother in need.

So where did I find the right dog? The one to warm my little boy's life?

The coldest place of all: prison.

One morning, I was looking up a murderer on the Florida Department of Corrections website. Yes, I did that often. Part of my job as a reporter. Past the “Most Wanted” notices, blotter descriptions, and pictures of officers in riot gear was a ticker: “Will you adopt me?” and photos of dogs graduating from training programs in Florida's prisons.

The dogs, rescued from area shelters, lived with inmate trainers for eight weeks. They were taught to stay, lie down, release, walk on a leash, not enter or exit a doorway without hearing the command to do so. They were crate-trained, potty-trained, and vaccinated.

They were . . . perfect!

Within five minutes, I was on the phone with Sandy Christy, director of DAWGS (Developing Adoptable Dogs With Good Sociability) in Prison.

Ms. Christy recommended a dog in training. Gracie was sixty pounds, but docile, obedient, and easy to command. “She is the star of the class,” Ms. Christy said.

She sent pictures—Gracie sitting, lying, standing, tongue wagging. She was muscular and white, with a pink nose and gold eyes. She certainly looked like a lovebug.

But Gracie was five hundred miles away, in a prison near the Florida Panhandle town of White City.

I looked at the photos of Gracie. Imagined the kids flocking to be near her. Imagined her chewing my Ferragamo heels. Imagined her swimming in the pool, then plopping down on my Ethan Allen sofa. Imagined her lying beside the children at night, snacking on their duvets. I imagined Gracie following little Wesley around when he retreated from the rest of us.

I talked to my father. He already fielded daily pickup, drop-off, babysitting, and home-improvement requests. Would he take on, when necessary, the responsibility of a dog?

“I think it's a great idea,” Dad said. “I'll go with you to pick her up.”

John was the wild card, one day strident about not getting a dog— “It's too much, Susan” —the next gushing about the cutest little bulldog he saw at a shelter.

“Are we crazy?” I asked John. “To adopt, sight unseen, a dog five hundred miles away?”

“Remember,” he said, “someone adopted you sight unseen.”

A one-thousand-mile round trip later to prison and back, Marina and Aubrey charged out our front door.

“Gracie! Gracie!” they squealed.

Wesley hung back, not wanting to come out of the house. But once the dog was inside, he joined the squealing pet-fest. Gracie, poor thing, urinated on the carpet.

No bother.

Now, Wesley will never spontaneously hug a human being. Never. But that night, Wesley climbed right inside the kennel with Gracie, sat beside her, patted her (at times bordering on pounding her), talking to her IN A VOICE LIKE THIS.

And
thump, thump, thump
went Gracie's tail.

“Look, Mom, she has sharp teeth!” Wesley said, peeling back her top and bottom lips. Gracie gave him a big lick on the cheek.

“Can I sleep with Gracie?” Wesley asked.

And just like that, Gracie was part of the family. The one who chased lizards. The expert digger (we joke the prisoners must have taught her that one). The one my kids greeted first in the morning and kissed last at night.

Within days, Wesley and Gracie were constant companions. When Gracie rolled on her back, inviting a belly scratch, Wesley obliged.

He no longer washed his hands after his French toast sticks, wanting Gracie to lick the syrup off instead.

He read her picture books, helped dress her in her Halloween costume (a duck), and wanted her in the bathroom when he took a bath.

Wesley loved to let her lick his face, relishing the ones right smack-dab on the mouth.

“Yuck.” I sighed.

But wonderful, for Wesley had never relished physical contact before.

I used to sing the children to sleep every night. I would sing soft and low, almost in a hum, until Wesley settled down.

John nearly cries when he thinks of it now. He told me he stood outside Wesley's door for years, listening to me sing. That's one of the rare requests John has made of me: to record my voice singing that song, before it slipped away.

Gracie became my surrogate song.

“Go lie down, Wesley,” I would say to him. “Be still and silent.”

“Then Gracie will come?”

“Yes.”

He would zip into his bed, pull his Thomas the Train blanket over him, eyes wide open in the nightlight, waiting.

I would walk Gracie in, until I could no longer walk. I would watch as she hopped on Wesley's bed, took one last lick at his face, then curled up beside him, closer than I ever could, and fell asleep.

W
esley's eighth birthday was September 9, 2011. It was the first major life event after my ALS diagnosis in June, and I wanted a quiet time. So did he. Wesley is most comfortable alone with Gracie. A swarm of party guests and noise would be unpleasant.

I knew the perfect plan: John, Wesley, and I would spend his birthday at the best zoo in the area, Metro Zoo, an hour and a half away in Miami, Florida.

“There are elephants at the big zoo,” I told Wesley. “Wanna go see them in Miami?”

“Yes! I want to go to Your-ami!” he said.

I laid down the rules ahead of time with John. “We see the animals Wesley wants to see. Let him lead us to kingdom come.”

Metro Zoo has these wonderful four-wheeled cart bicycles with a lemon-yellow canopy to shield the sun. We rented one, and John pedaled us to the Asian elephants.

Then across the zoo to the African elephants.

Then back again to the Asian ones to look at their ears. And back to the African ones to note the difference.

And back and forth again to note their heads.

And once again to compare their size.

We pedaled around all day, sipping lemonade, eating cotton candy, looking at elephants. Wesley was in heaven.

And so was I.

I didn't have a plan for my year, beyond living with joy. I just grasped the opportunities that arose: the wonder of the space shuttle. The simplicity of a day at the zoo. The peace of lying down with Gracie.

Those experiences were precious, I realized, because of Wesley. He helped me appreciate Gracie, even when she dug up our backyard. He taught me that African elephants have Africa-shaped ears.

Because of him, I know those yellow four-person bicycles are made in Italy and too expensive for a middle-class family to afford (believe me, I tried).

If not for Wesley, I wouldn't have appreciated how exciting it was, on the day the space shuttle launched, to stand on top of our van.

Those memories remain crystal sharp for me. Every time I think of them, I smile. When I am paralyzed, they will be my comfort and strength.

But what would Wesley remember? That was the question.

When you are facing death, you long to leave something behind. I wanted to plant memories, but what Wesley remembered was entirely random, one of his Aspie quirks. Often, he didn't seem to remember at all.

In late August 2012, more than a year after the trip, I began writing about our adventure to see the space shuttle—the dented roof, the uncertainty, the wonder when it soared.

Curious, I asked Wesley, in a nonleading way, if he remembered our adventure.

He twirled his long, blond hair in his fingers. “Yup,” he said, popping the last sound like he always does. “Yeh-puh. I remember.”

I asked: “Who was there?”

He rattled off the names of Nancy's family. I thought he might be naming people by rote, as he often does. Then he added two names—Samantha and Brooke—Nancy's friend's children. The only time we met them was that day.

“Where did we watch?” I asked.

“On top of the van.”

Wesley smiled. As did I, with delight.

A few weeks later, he drew a gorgeous picture of Cindy the dolphin in black magic marker. It is framed now, and hangs over our dining table.

Mission accomplished, I think when I see it.

Wesley's garden is already growing.