When we first heard about Thorin having holes in his heart, I did research. I discovered on the Global Down Syndrome Foundation website that “up until 1984 doctors in the United States refused to provide lifesaving procedures to people with Down syndrome such as surgeries related to the heart. Even today, there are people with Down syndrome dying in their 30s or 40s simply because a doctor refused to perform . . . heart [surgeries] when they were infants.”
The conversation I had that day with him took place in 2009. His granddaughter died twenty-five years before that, making her death sometime in 1984. I knew I could never ask him what his family had been told. From his deep grief, I’m convinced it wasn’t—your granddaughter is not worth saving.
The night before we left to go back home, my mom and I sat in her living room while Thorin slept in the bedroom. We reminisced about our short trip and talked about when she would be able to come to Maine. She also shared something that had been bothering her.
“How did I think he was going to be so much work? Why did I think he would be so different?”
“It’s okay,” I said.
“It’s not,” she replied. “I’m disappointed in myself. All those months I feared him, I could have just loved him. I will never forgive myself.”
We sat quietly.
“It’ll work out,” she said. “This time is your labor.”
“Labor?”
“You don’t get a child without experiencing great pain. For you and Ward, this time waiting for the court date is your labor.”
If I had known what having a child would do for my relationship with my mother, I would have had adopted one when I was twelve. Thorin created a profound and unforeseen change in the nature of our relationship: we both loved the same person with such intensity our love aligned us in a way like never before. She was no longer the mother, and I was no longer the daughter. Now she was the grandmother, and I was the mother. I would later get into the habit of calling her while I waited during Thorin’s visits with his mother. Sometimes we talked about where he was, and sometimes we talked about anything else but that.
On the flight back, Thorin and I were put under the same scrutiny by TSA. This time I couldn’t hold in my feelings. As the woman lifted up his clothes and padded his diaper, I let the tears fall without wiping them away.
“I love children. I do. I have a niece and a nephew,” she said, trying to convince me.
In disbelief, I shook my head back and forth.
When I got home, I quizzed everyone I knew if they had experienced or witnessed such a thing by TSA. No one had. I looked online and came up with my best deduction: the year before in Baghdad, Al-Qaeda had strapped remote-controlled explosives to two women with Down syndrome that were detonated in a marketplace killing the women and scores of others. Had the TSA agents seen other parents with their children as normal families on their way to visit grandparents and me as a mad bomber who would use her child as a weapon simply because Thorin had Down syndrome?
One of the perks of being in Wisconsin with my mother was that I missed both a visit with Thorin’s mother and a visit from Karen. They both brought up very different feelings, but both represented threats to Thorin staying with us. If Karen had told us her report to the court would be favorable toward Ward and me, I could have accepted her. Instead, she was cryptic and said she hadn’t written her report yet.
I felt powerless, impotent. When she visited the day after we got back, I had to keep my hostility in check because her job was judging our competency as parents. About ten minutes into the visit, she asked to use the bathroom. She routinely asked to use our bathroom, and I was convinced she was snooping.
Having read countless mystery thrillers, I knew if I placed a tiny piece of paper in one of the corners of the medicine cabinet I could tell if she had looked inside. After she left, I found my little paper trap had fluttered on to the floor underneath the sink.
I decided this indiscretion on her part deserved some response on my part. I knew she couldn’t operate the child gate at the top of the stairs to the second floor where the bathroom was located. During her next visit, she asked to go to the bathroom, so I led the way upstairs to open the gate for her. Instead of leaving it unlocked, I quietly locked it back in place. Once downstairs, I took Thorin and the dogs outside. Almost fifteen minutes later, she walked out the backdoor. We were sitting on the patio, eating fish crackers and drinking apple juice.
“You couldn’t hear me yelling?” she asked as she wiped sweat off the back of her neck.
“Yelling?” I asked. I hadn’t actually heard yelling.
“I have been stuck behind that gate, yelling,” she said. “I finally got it open . . .”
“I’m sorry.”
“You didn’t wonder where I was all this time?”
I shook my head. “Those gates are tricky. . . . Fish crackers?” I said, offering her the bag.
Our opinion of Thorin’s preschool never changed. Ward and I were constantly meeting with the school’s teachers and administrators, both separately and together. I was troubled by the fact his teacher was often holding Thorin when I came to pick him up. She would completely envelop him with her arms and lean over him with her body. I asked to speak with her and her supervisor. When she came to the office for the meeting, she had Thorin in her arms.
“Couldn’t you have left him in the classroom?”
