Boy Wants to Play Ball

A newsletter came in the mail in the fall of 1993.

On the front page of these stapled mimeographed pages, there was a photo of a boy in a wheelchair with a trophy from Challenger Baseball, Little League’s program for kids with disabilities.

Ten-year-old Thomas held the newsletter in his hands and examined the picture, his head tilted forward, his gaze focused, light brown hair framing his face. He sat in the middle of our kitchen in his new wheelchair, a lightweight manual one in his favorite color, blue. Autumn sun poured in through the glass doors and bathed his slight frame.

“I want that,” he said, blue eyes gleaming, as he drew his gaze away from the photo and looked up at me.

Nine, ten, eleven… these were tough years for my son, when he started rapidly losing his abilities. His diagnosis at age five with Ataxia-telangiectasia (A-T), a debilitating neurological condition, shattered his parents’ hearts, and changed the trajectory of all of our lives. His early development, slightly off, now deteriorated. At the time, only two doctors, one on each coast, were experts; one had put together this newsletter for parents to share coping tips.

Stumbling blindly on our own, we had recently welcomed a service dog, Breezy. She was not a panacea. Thomas could not walk independently with the golden retriever’s support; he needed an adult prop on the other side. He began to use the wheelchair. He cried. He railed.

“I hate myself,” he told me as he lost the ability to walk, to write, and to tie his shoes. I sat on his bed next to him. “I’m dirt. I wish I’d never been born.”

“I love you” was all I could think of to say, and drew him into my arms. “I love that you were born. I love how brave and determined and patient you are. I love what a good friend and brother and son you are. But I don’t like this condition that is giving you such a hard time.”

One afternoon, I sat on the wicker loveseat in our kitchen, one arm around a bawling Thomas on one side and the other around his crying younger sister on the other.

“I’m not equipped,” I moaned inwardly. But what about Challenger? I didn’t know anything about baseball, but maybe it was just what we needed.

In those pre-Internet days, I picked up the phone. We did not have Challenger or even Little League locally. We would have to find our own way. Thomas’ physical therapist Leslie was all in. We started recruiting. We needed everything—sponsors, coaches, players, buddies to help them, and a field.

I went to the Greenfield town hall to meet the Recreation Director. I explained our idea for kids with disabilities to play ball with the help of peer buddies.

“Is there a field that we could use?”

“Yes,” he said. “We have a field open at the Middle School. You can play there.” He smiled from behind a cluttered desk in his small upstairs office. “We can take this on as a town program, if you want.”

I hurried home to report to Thomas.

“We’re on!” I said. “I’m so happy, I could give the Rec Director a kiss!”

“You can’t,” said Thomas, folding his arms across his chest.

“Why not?” I said, surprised by his insistence.

“Your lips are taken.”

The Recorder newspaper ran a front-page story with a photo of Thomas sitting cross-legged on the ground, baseball cap turned backwards, Breezy by his side. “He really wants to play baseball,” said the article.

“If you want to join, you have to be willing to get dirty,” Thomas said.

Buddy Baseball’s first season in the dirt was the spring of 1994.

Our team included players in wheelchairs, with walkers, with visual impairments, and with developmental disabilities. Buddies were friends, siblings, neighbors. Thomas’s sister Victoria, six, was buddy to a girl her age in a wheelchair.

We split into two teams and played against each other.

Thomas at bat was all concentration. Several pitches flew through his swing; we didn’t count strikes. Then he connected with a force so strong that his wheelchair rocked back and forth. The ball bounced towards second base. His buddy Joel sprang into action and pushed the wheelchair as fast as he could, Thomas grinning, eyes on first base.

“Safe!”

On our last Saturday, we played at the tree-lined Green River swim area and had a pizza party and awards ceremony. Thomas clutched his gold statue of a batter on a “Buddy Baseball” stand. His eyes were wide and his smile wider, while his service dog wagged by his side and Joel danced and whooped.

Buddy Baseball celebrated its 30th birthday last year. I’ve coached every year since it started. That first season I ended up having to deal with a breast cancer diagnosis and treatment. At Buddy Baseball, my fear for my health and my son’s, the fear I might die and leave my children behind, was stilled.

Thomas played on, in later years as emeritus with “Founder” on the back of his T-shirt. He swung the bat through his own chemo for two bouts of cancer, and not long after our 22nd season ended, his disease caught up with him. He died peacefully, age 34, family and dog at his side. His was a remarkable life, one that earned him Greenfield Community College’s Distinguished Alumni Award. After GCC he graduated from UMass, made short personal videos about his life with physical disabilities, and presented Life in a Wheelchair, a disability awareness program, in local schools. But he dreamed he could marry, play soccer, turn his action movie script into a Hollywood blockbuster—and drive a red Ferrari.

Grieving terribly, I wondered if I could return to Buddy Baseball. It is Thomas’ legacy. I wanted to keep it going.

The first Saturday of the season I arrived at the field with trepidation. A longtime player in a wheelchair said, “I miss Tom. But I think he’s here in spirit.”

“I do, too,” I replied, “I feel him, too.”

I noticed a mother on the field running after two young children—new players, who zipped around in small, motorized wheelchairs. The mom called to them, laughing and encouraging as they squealed in delight. As they neared me, she looked up. In that instant, I saw myself. I saw her bright face, the exuberant joy, the knowledge that every moment was so dear, the love for these precious beings whose lives and futures were so challenged, and I recognized that that was how I had lived my whole life with Thomas. That was my face and my laughter and my full-to-breaking heart.