Mom with newborn Matthew

An excerpt from A Regular Guy: Growing Up With Autism

“Grandma, I don’t like you to wear that,” Matthew said, standing in the doorway of my parents’ bedroom. He was referring to the plastic tube that cradled Mom’s face, pushing oxygen through her nose. It was the last day of August 2002, just before Matthew was to return to Camphill for his second year.

“Matthew, you can come over and sit next to me. I’ll show you how this works.”

He plopped onto the bed next to my mom and listened as she explained how her lungs were tired, and how the plastic tube carried oxygen that kept her going.

“I don’t like it, it looks bad,” said Matthew. “I like you better the other way. I like it better when you’re not in bed all the time.”

“Matthew,” I started, but Mom signaled that she could handle it.

“Here,” she said, pulling the plastic tubing from her nose, just for a few seconds. “Is that better?”

Matthew’s face exploded with joy.

“Hi, Grandma!” he said, holding her too tight, but not tight enough.

Just one month later, with Matthew safely back at school, my father called at 3:10 in the afternoon, and I knew, because we always talked at 8:30 a.m., and then at 5:20 p.m., right before Tom Brokaw.

“Mamma died,” he said. I told him I’d be right there.

I drove to Carmel calmly, yet tearfully, calling people from the road to share the news. Everyone expected it, but no one could believe it. Only 71 when she died, she never complained during her steady decline. Instead, she remarked daily about how lucky she was.

Dad had taken care of my mother cheerfully and tirelessly. His family and friends encouraged him to get help, a night nurse or an aide, but he refused, and somehow survived the years of constant caring, lifting, and lack of sleep. When my mother was discouraged, he would take her face in his hands and tell her he loved her. Even when she was at her worst, Dad took her to get her nails done or her hair styled, or out to lunch at a favorite spot. He made sure her lipstick was always nearby; he prepared and presented her meals with flair. She continued to laugh at his jokes, and he at hers, his eyes glistening with grief.

By the time I got to Carmel, Mom’s body had been taken away, and Dad was leafing through his address book calling one name after the other.

“Joannie? Phil Bowhay. Susie passed away this morning. I know you did, she loved you too.”

My dad was so distraught that I didn’t dare shed a tear or cave in to my grief, and I took over the phone calls when it got to be too much for him. But there was one phone call that neither of us had the courage to make that day.

“When are you going to tell Matthew?” Dad asked. “You’ve got to call Matthew.”

It was bedtime in Pennsylvania, so I decided to put the call off until the next morning. I shared the news with Matthew’s housefather, David, who encouraged me to call early the next day so that Matthew’s housemates could say a prayer for my mother at the morning meeting.

“Hi, Matthew. It’s Mom.”

“Why are you calling?” he asked calmly.

“Matthew, I have some very sad news to tell you. Grandma died yesterday.”

“She died?” he yelled. He dropped the phone and wailed, “My Grandma died! Oh my God! I loved my Grandma so much!”

“Matthew?” I tried yelling into the mouthpiece loud enough that he would hear me and pick up the phone again.

“MATTHEW?” I started crying, sobbing for the first time since I’d heard the news myself.

Matthew picked up the phone again and started to ask questions. When did she die? Tell me everything. What was she doing when she died? What did Grandpa do when she died? What was I doing when she died? Was I just kidding, and was she actually alive? No, I cried, I’m not kidding.

“What was the last thing she said?” he asked tearfully. I turned to my father.

“Dad,” I sobbed, “Matthew wants to know what Mom’s last words were.”

Dad took the phone and said, “Matthew? The last thing Grandma said was ‘I sure am proud of Matthew. I sure love him.’”