Not Always Happy

by Kari Wagner-Peck

  “She hasn’t done anything, the court said . . .”

  “Yeah,” he replied, “but the burden is on the state to prove its case, and it is a high standard to meet. Terminating parental rights is a very serious thing to do. The state must prove the birth parents’ unfitness above all, and, secondly, that termination is in the best interest of the child.”

  “What can we do to help?”

  “Take good notes. Document everything,” he said. “Be good parents. That’ll be easy.”

  “How strong is the case?” I inquired.

  “Good case.”

  “Okay then. Thank you for talking with me.”

  “You and Ward have the heavy lifting. Call or email me whenever you want.” Then he paused. “You’re going to hear this from Linda, anyway. . . . The court date is definitely not July.”

  I couldn’t keep the disappointment out of my voice. “Why?”

  “One of the witnesses has a family obligation out of the country,” he explained. “He is available by phone, but the mother’s attorney is fighting that. The judge will probably agree with her.”

  “So when?”

  “It could be September.”

  “Could it be sooner?” I asked knowing that was unlikely.

  “It could be November,” he said making me feel worse.

  In spite of the uncertainty, we couldn’t help enjoying Thorin. He made the stress and fear worth it. Part of the fun and struggle was getting to know each other. There were the typical barriers to learning about your child plus others. We didn’t really speak the same language. He could for the most part understand me but couldn’t tell me what was on his mind. We didn’t know each other’s likes or dislikes.

  I think some of my early bonding with him started in the grocery store. I like to eat while I shop. I picked up this habit from my dad. Not thinking one day, I opened a bag of Cheetos and started eating. Thorin made the sign for “eat,” so I gave him one of the Cheetos. By the time we got to the checkout, our hands and lips were covered in that weird Cheetos orange. I knew I was going overboard but I didn’t want to stop. I was the fun parent for a change.

  The cashier commented, “Oh, look at you two and your orange faces!”

  Thorin and I gave each other a high-five.

  Cheetos became part of our regular shopping experience. During one shopping trip, a lady who looked like the kind of mother who monitored television watching and cooked nutritious meals was walking toward us in the diaper aisle. I almost closed the Cheetos bag and shoved them under the other groceries. Thorin and I had Cheetos in our hands, gritty with orange dust, when she reached us.

  “Those aren’t good for him,” she said.

  “I know, but he’s addicted to them.”

  He and I cracked up. He didn’t understand what addicted meant but he did think I was funny. It was this cosmic moment where we got each other. I was a parent! Did I wish I had more to offer than crappy foodstuffs and wisecracking? Sure. But it was still an awesome thing.

  I received special permission from DHHS to take Thorin to Wisconsin to see my mom. She had visited us the month before to meet Thorin. The trip turned into a six-day lovefest because they spent most of the visit cuddling. My mom was finally becoming a grandparent at seventy-seven.

  Never having traveled with a child, I was overwhelmed by what I needed to carry: food, toys, paper, crayons, markers, diapers, wipes, a change of clothes, and a travel stroller. And then there was my stuff. Thorin and I took a shuttle bus to Boston Logan International Airport. When we disembarked, I had to quickly learn how to push a stroller and pull a suitcase at the same time.

  I had a terrible fear of flying. My routine was to sit next to the aisle for easy escape when the plane went down. It was great if I could get my seat partner to keep the shade down. Otherwise, I kept my eyes closed and pretended I was on a bus. Thorin, who had never flown, had other ideas: he pushed the shade up and looked out the window. I couldn’t keep my eyes closed because I was a parent now.

  On the first flight of our trip, we ran into the most terrifying turbulence I had ever experienced. Thorin was actually bouncing above the seat; he loved it, laughing hysterically and making the sign for more. I turned to look at the guy across the aisle. He was watching Thorin with a huge grin on his face.

  “Kids, right?” he chuckled.

  The connecting flight required us to go through security, again. We were stopped by TSA.

  “Ma’am he has to walk through the scanner.”

  “What? He can’t walk,” I said. “I don’t understand.”

  “You can carry him then.”

  The alarm went off.

  “Ma’am, take his pants off, please,” the TSA agent said. “And remove your barrettes.”

  I stood numb.

  “Ma’am, his pants have metal on them, and your barrettes,” the TSA agent said, motioning to me.

  The line behind us backed up as I unhooked Thorin’s overalls while holding him and pulling the barrettes out of my hair.

  “Ma’am, hand me your bag. We need to search it.”

  “Ma’am, are you sure he can’t walk through?”

  “He can’t walk.”

  I watched as some conferring between the TSA agents ensued. Then I noticed a group of young men who I guessed were Indian. One of them stepped forward.

  “Why are you doing this to a baby, sir?” he asked the TSA agent.

  You could have heard a pin drop.

  “Sir, you need to get back in line, now.”

  I turned and mouthed “thank you” to our fellow traveler. I felt the same as our defender. I knew it was wrong but I wasn’t going to win against TSA.

  “Okay, you can carry him through,” the TSA agent said.

  After I went through the scanner, two TSA agents laid Thorin down on a stopped conveyer belt and patted him down. They lifted his thin sweater and T-shirt. They opened his diaper, looked inside, and reattached it. They went through everything in our bag, placing the objects on the belt. They tested the liquid in his juice container.

  When they were done one of the agents said, “Okay, you can go.”

  I felt like we had been beat up.

  “They’re jerks,” the woman behind me in line whispered in my ear. “What gate? I’m going to get you there.”

  The woman helped me repack my bag and dress Thorin. She walked us to our plane and gave us both a goodbye hug. I couldn’t say anything to Thorin. I wanted him to think it was a normal occurrence. During the flight, I felt sick about what had happened. I knew it had to do with Down syndrome somehow because in our short time with Thorin most things people did that were rude or offensive had to do with Down syndrome.

  My mom picked us up at the shuttle station. She and I started crying. She held Thorin as she hugged and kissed him.

  “I missed you so much, Thorin!” she told him as he burrowed into her neck stroking her hair.

  Then she offered him ice cream.

  “Mom, it’s dinnertime.”

  “Why can’t we have ice cream for dinner? Right, Thorin?”

  Thorin responded with two thumbs-up. I was outnumbered.

  Later in the evening, my mom informed me she had bought an inflatable mattress—for me. Thorin would sleep with her in the bed. As I tried to get comfortable in the living room, I heard them giggling. Then Thorin would sigh, followed by murmuring and more giggling.

  At breakfast, my mom announced she wanted to show off Thorin to everyone. Our days were filled with visits to relatives and family friends. She also brought Thorin to cocktail hour in the great room at her senior living complex; the joint was rife with grandparents.

  “May I present the best grandchild in the world!” she told the assembled group, which stopped all conversation. Then my mom whispered to me, “I think they’re shocked at how beautiful Thorin is.”

  “Well,” I whispered back, “they’re shocked by something.”

  One morning while Thorin slept in, my mom told me abo
ut a couple who lived on another floor. The previous week, she had found out they had had a granddaughter with Down syndrome who died when she was five years old. The wife had wanted to share a photo of her granddaughter with my mom.

  “I never show her picture to anyone because I don’t know what the person will say.”

  She and my mom looked at the photo. My mom commented how pretty her granddaughter looked. They also talked about Thorin. During our stay, I ran into the husband taking my mom’s trash out. He introduced himself to me by saying his granddaughter had Down syndrome. Before I could say anything, he continued.

  “We loved her. We didn’t care that she had Down syndrome. None of us did. She lit up our lives. You know what? No one ever said congratulations when she was born. Not one person. Then she got sick. She had a bad heart. It killed me when she died. Twenty-four years ago . . . I still miss her every day. You know what? People said things like it was a blessing but it wasn’t; it was awful.”

  My eyes were wet. I looked up at him. His powerful arms were crossed tight against his chest straining his shirt. His hard eyes said it all: “Don’t hug me and don’t cry. I can’t handle it.” Then he walked away.

  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?” I asked.

  “He seems so happy with me holding him.”

  I looked to the supervisor for guidance, but she was smiling patiently for me to continue.

  “He should be moving around and playing with other children,” I said in an instructive tone.

  The teacher looked up from Thorin and responded, “My kids really hate me. My husband and I are getting a divorce.”

  The supervisor shook her head sympathetically. I was speechless. Did she expect me to say, “Oh, by all means then please hold my son on your lap all day if it will make you feel better.” I realized there was no point in continuing the conversation.

  As I reached to take Thorin, I said, “Okay, you can go back and play with the other children.” I carried him to the classroom and left.

  A few days later, Ward called me at work, livid. “I just got a call from the physical therapist!”

  “Okay.”

  “She’s doing a report on Thorin. She hasn’t had time to see if he can crawl stairs so she wanted me to tell her if he can.”

  “For Pete’s sake! What did you say?”

  “I told her that he can climb stairs. Then I asked if there was anything else she didn’t get to.”

  We were concerned Thorin would not develop there, instead becoming more helpless. One day, I showed up a few minutes early at lunchtime. There were about eight kids and four teachers sitting around a table, eating. I saw an aide s
itting behind Thorin with her arm around him from the back shoveling yogurt in his mouth. I made a conscious effort to be calm and maintain my composure.

  “What are you doing?” I asked.

  I thought what I said was in a sort of oh-so-curious tone. But, the look on the other kids’ faces and the fact that some had stopped eating with their spoons in mid-air told me I had sounded more like Linda Blair in The Exorcist.

  No response from the aide, who had pushed her chair back from him.

  “He can feed himself,” I told her. My disgust was clear.

  Discussion of Thorin’s preschool dominated our life. Ward and I talked about the school endlessly at night. I talked to my sister. I talked to two friends at work almost on a daily basis—both were parents. After a while, they were all saying the same thing: “You don’t like this place and you don’t trust these people.”

  A few days later, I forgot to notify the school that I would be coming two hours early to pick up Thorin. As I walked down the hall to his classroom, I heard screaming coming from behind one of the doors—horror film screaming. My heart started racing. Without thinking, I opened the door. It was Thorin screaming uncontrollably as he thrashed in a chair, unable to move freely because he was restrained by a belt at his chest. His hair was wet and matted against his head. Sitting next to him, as if nothing was amiss, was a woman who was several months pregnant, reading a book.

  I flew to Thorin, unbuckled the belt, and lifted him into my arms.

  “What are you doing?” My voice was shaking.

  “Speech therapy.”

  Really? Did she really think what she was doing was a therapeutic? I wanted to smash her.

  “Why did you strap him in?”

  “Because he tries to get away.”

  That stopped me cold. I should have called the police. Instead, I turned and left with Thorin. We were done there.

  I called Ward.

  “How many people walked down that hall and heard him screaming?” he asked immediately after I gave the play-by-play.

  I wondered how many times she had done that to him before that day. When we reported it, nothing was done. It was chalked up to inexperience on the part of the speech therapist. What I saw was not inexperience but an act of cruelty. If I hadn’t walked in on it, I would never have known because Thorin couldn’t tell me.