Not Always Happy

by Kari Wagner-Peck

  “The wooly mammoth’s tusks are too sharp,” she said, pointing at the cake.

  “I think it’ll be fine.”

  “I’m going to put it up, just in case,” she said removing the miniature beast.

  I hoped she wouldn’t notice the little caveman’s spear—placing a third of the decorations in quarantine. In spite of my perceived safety deficits, Thorin had a great birthday. I wasn’t convinced Thorin knew what the celebration was for, though. I didn’t attribute that to Down syndrome but to the fact this was his third birthday in as many homes. Jade had been at his first birthday but not his second. At this birthday, there were people he had just met, and Sherry was not present. How could he grasp the concept that birthdays are celebrations where the people who love you most get together to celebrate your birth?

  We saw Jade at least once a month. She was always on guard for some inadequacy on my part and even signs of mistreatment. A few weeks after his party, we had a visit lined up with her. Thorin had been playing outside, and Ward called him in to change from his muddy clothes. Standing in the kitchen, Thorin lost his footing as he pulled off his jacket. He faced planted on the kitchen floor. I ran to him when I heard him scream. Ward was calmly assessing Thorin’s injury while Thorin screamed and sobbed. I, on the other hand, screamed bloody murder upon seeing Thorin’s face covered in dripping blood. Thorin took this as his cue to start screaming louder.

  “Kari, stop it! It’s not that bad,” Ward counseled me.

  “Not that bad! He’s covered in blood!”

  Thorin wailed.

  “Kari, go in the other room. You’re scaring him.”

  Holy, crap! I was scaring him!

  I sat in the living room while Ward updated me.

  “He split his lip,” he shouted. “It looks fine, almost done bleeding.”

  “All that blood from a spilt lip?” I shouted back.

  “I take it you haven’t seen much boxing,” he said dryly.

  Next, I became terrified at the thought of seeing Jade later that day. I was convinced she would call DHHS.

  “Kari, she’s not going to do that. You’re overreacting,” Ward assured me.

  “What if I’m not overreacting?”

  “I’m going to assume you are, Screamy,” he said smirking.

  When we saw her, I didn’t even have a chance to explain his swollen, bruised lip.

  “How exactly did that happen?” she said, touching Thorin’s face.

  I made the mistake of telling the story to her in a rushed, slightly manic and apologetic way.

  “Don’t apologize to me; I’m not the one you scarred for life. And screaming? How stupid was that?”

  “Well, he looks a million times better now,” I said smiling. Privately I thought, What a ball buster.

  “Except for the fact he needs a haircut,” she snapped. I had to hand it to her; she was quick with a comeback.

  “Oh, he wants to grow it out,” I said, realizing our roles were totally reversed. It was a real Freaky Friday situation with Jade. She was the adult.

  Jade snorted. “He’s three; he doesn’t know what he wants. You want to grow it out. Bad idea.”

  During that same visit, Jade told us Halloween was her favorite holiday so it would probably be Thorin’s. Sherry had shared with me that Thorin dressed up as a giraffe the previous year, but he hadn’t been trick-or-treating yet.

  Later that month, I took Thorin shopping for a costume and offered a number of characters to choose from. He shook his head no at all of them. After ten minutes of trying to figure it out with him, I decided to pick one for him. There was a bee costume that would be toasty warm for trick and treating with Ella and Evvy; it is the only costume I ever picked out for him. From then on, Thorin would plan months in advance for his costume choice, usually an Avenger character. He wears the costume for weeks before Halloween and weeks after. Jade was correct: Halloween is Thorin’s favorite holiday, surpassing even Christmas and his bedroom motif.

  Five years after that first Halloween together, Thorin and I were sitting in the backyard. It was July. He turned and faced me.

  “Thanks you for bee costume.”

  “The one from when you were little?”

  “Yes.”

  “Wow. You had to wait a long time to be able to tell me that.”

  “Long time.”

  “You’re welcome. I’m glad I got it right.”

  As the weather got colder, Thorin started getting sick. He would get horrible colds; snot would run from his nose, and he would have wracking coughs. One night, I was awakened by what sounded like a seal barking. Thorin was standing in his crib barking and sobbing. I reached to pick him up.

  He screamed, “No, Daddy!”

  I yelled to Ward who was able to hold Thorin and provide some comfort. I knew it was croup because I had seen Terms of Endearment. I suggested, as Debra Winger had demonstrated in the film, we start a hot shower and close the bathroom door with the three of us huddled in the steam. What I discovered is—in that the same way Jack Nicholson would never really be interested in a woman the age of Shirley MacLaine—the steam room treatment was not an actual remedy. Thorin now was not only barking and crying, but he was also screaming and flaying his arms. The three of us had our hair plastered on our head, and we were drenched in sweat.

  “He’s not better,” I said quietly.

  Ward mouthed the words, “I’m scared.”

  Trying not to act as panicked as I felt, I said, “Hey, let’s get in the car and go to a place where they help kids who get sick in the middle of the night.”

  “You think this is bad enough for a hospital!” Ward exclaimed.

  I couldn’t exactly send Ward to the living room, like he did with me, so I tried to calm Thorin.

  “It’s not that bad, Sweetie, but we are new at this so we should go to the hospital.”

  Once there, he surprisingly sounded better. The emergency room doctor verified it was croup. He also told us the reason Thorin improved was that the cold air on way to the hospital probably opened his airways. He told us when it happened again, which it would, to take him for a drive with the windows open. We were shaken but relieved there was an easy fix.

  The doctor was right. A couple weeks later, we were awakened by Thorin’s barking cough. Again, Thorin only wanted Ward to hold him. Thorin protested going in the car, sobbing. The temperature gauge on the car read 25 degrees as we drove around our neighborhood with the windows down. After twenty minutes, the barking subsided. We got back into bed. Ninety minutes later he was back up barking, so we got in the car for a second tour. Once he quieted down, we went back home. Thorin wouldn’t go back to sleep.

  “I have to sleep, otherwise I’m a wreck all day,” Ward told me.

  “Please do then because I find lack of sleep invigorating!”

  “Are you being sarcastic? Because that seems unnecessary.”

  “It’s completely necessary, Sleeping Beauty!”

  Ward went off to bed. I lay with Thorin on the couch and watched old Barney Miller episodes. While Coco slept upstairs, likely in Ward’s arms, Walt climbed onto the couch lying down with his head upright, inches from Thorin. Thorin and I fell asleep. Every so often, I would rouse myself to check on Thorin. I found Walt was still on guard, watchful and alert. After that night, Walt stopped sleeping on our bed and moved into Thorin’s room to sleep curled up on the rug next to his crib.

  In the morning, I called Sherry.

  “Yeah, he was sick all last winter. So awful sick with the croup. It was scary. I worried about his health.”

  His primary doctor reassured us that it was common for someone with a compromised immune system and Down syndrome to be sick often. During that winter, there were three more trips to the emergency room when driving around the neighborhood with the windows down was not enough. On one of those visits, Thorin was admitted. Something different happened that night; the barking became a tight high-pitched sound as he inhaled. He looked like h
e was struggling with his breathing. His eyes were opened wide.

  When we got to the hospital, they immediately gave Thorin oxygen. His chest heaved, and he beat his fists at his side. I felt wild inside. Ward and I stood against the wall in silence as we watched the doctor and nurse help Thorin. When he calmed down, the doctor turned to us.

  “Don’t worry, it’s just stridor.”

  “It seemed like he struggled breathing though,” I told him, my voice tight.

  “Oh, I’m sure he did. Stridor feels like you are breathing through a straw.”

  The three of us stayed in the hospital room together: Thorin slept in an over-sized crib, and Ward and I slept together on a single bed. Strangely, it was one of the most peaceful nights of sleep any of us had in weeks. Thorin was well attended to, so Ward and I knew we wouldn’t be woken in the middle of the night to Thorin’s screams, rousing us for a drive to the hospital—we were already there.

  Thorin was given a nebulizing treatment, antibiotics, and steroids. We were told to get a cool mist vaporizer for his room, and if he showed the slightest sign of being sick, we should keep him home from school. One emergency room doctor told us that once the warm weather was back Thorin would be good again. I didn’t take much comfort in that since winter in Maine is about six months long.

  Thorin’s illness was frightening for him, of course, and us. It also caused Thorin stress; he missed school, and his development was interrupted. It stressed my relationship with Ward, and I felt lonely. I was lucky to have my sister, Betty, who listened to my fears, cleaned our apartment, did laundry, and made meals for us.

  During this time, Ward and I both read books, articles, and blog posts on Down syndrome, first looking for information on health concerns, particularly respiratory ones. We learned children with Down syndrome have smaller and narrower nasal passages and airways. As a result, they are more prone to croup and stridor. Aside from the medical information we found, Ward and I were struck again by the repetitive narrative by both medical professionals and parents on the issue of grief. A common experience described by parents was finding out they were going to have a baby with Down syndrome or the baby was delivered and had Down syndrome. The parents would then reassure the reader that ultimately they accepted their child with Down syndrome.

  It isn’t that I couldn’t understand how someone might feel that way, but I couldn’t relate at all. It was love at first sight followed by months of fear at the thought of losing Thorin. I believed the grief of actually losing him would have broken me.

  “I think there’s another story that needs to be out there,” I told Ward.

  “I’ve been thinking the same thing. I’d like to tackle the atypical piece, too. That division can really suck if you’re the atypical one.”

  In the course of a sentence, we went from discussing the dominant storyline in what we were reading to the life we were living and wanted to share.

  “Could we do a blog?” I asked.

  “Yeah. We’re good writers. We have something interesting to say. That’s enough.”

  We knew we couldn’t do anything until after the adoption. Thorin was still legally a ward of the state. We couldn’t post photos of him on Facebook or allow photo releases at his school and we certainly couldn’t write about him on a blog. For the months leading up to his adoption, we researched how to set up a blog and discussed what it was we thought we had to offer.

  “I want this to be about Thorin, not us,” I said.

  “I get it.”

  “Right. And, Thorin may want to read this someday so . . .”

  “Let’s be careful about what we write and focus on what he would want to share.”

  “Yes!” I enthusiastically agreed.

  “Okay, he’s our protagonist. It should be named after him.”

  “Right. And, it should be funny whenever possible,” I suggested.

  “He’s a funny kid.”

  We batted blog names and ideas back and forth for months.

  “What about Thunder Boy? Thorin means Thunder!” Ward offered.

  “Love it!”

  Even though we would eventually discard Thunder Boy as a possibility, Thorin later became obsessed with the Avengers, particularly Thor, the god of the thunder.

  A few weeks later, we considered Extraordinary Boy but agreed it was showy. Then one afternoon, Ward called sounding excited.

  “I got it!”

  “Lay it on me!”

  “A Typical Boy! It works both ways, the way the world sees him—separate, apart—and the way we see him—like any kid. Bonus, it’s a Warren Zevon song!”

  “I love it! You’re brilliant!”

  We then found out it was taken as a blog name, proving someone else’s brilliance. So we tweaked the name and settled happily on A Typical Son.

  “I think we should have a quote on the blog that unifies our intention. I think it should be . . .”

  “Whitman!” we spoke in unison.

  We started scouring Leaves of Grass for the quote that would define our philosophy. One night in bed, Ward passed me the book opened to “Song of Myself.” He ran his finger over the text he wanted me to read: “. . . I exist as I am, that is enough.”

  “Yeah, Baby! That’s true for everyone!” I cheered.

  “Exactly,” Ward said as he turned off the light.

  I did believe in “that is enough,” but there were times it was tested. Thorin was three and a half years old. He was sitting on the coffee table in the living room, looking at a Curious George book.

  “Where go?” he asked as I walked through the room.

  “I’m going to the bathroom.”

  “I’m going to read book.”

  I stopped dead in my tracks.

  “Ward, did you hear that!” I yelled.

  Ward ran into the room, “I did! Buddy, that was fantastic!”

  “Thorin you said a complete sentence!”

  “No!” shouted Thorin.

  I thought maybe some communication miracle had happened. I hoped Thorin was free to express himself. As days passed without that kind of communication happening again, I first felt disappointment then I meditated on Whitman. I was thrilled about Thorin’s sentence because it was how I communicated. I valued it more and certainly not as “enough.” There is no lesser or greater communication; there is only “communication.” I made the mistake of sharing Thorin’s sentence with the speech therapist.

  “Have you ever heard of that sort of thing? Is it spontaneous speech?”

  “No, I have never heard of that.”

  Of course you never heard of it. Dashed hopes is your forte.

  It would be almost four years before Thorin would spontaneously say a complete sentence of that length.

  Seven months after Thorin’s mother had surrendered her parental rights, we were notified of our adoption date. It would take place the following month. After that we would be parents sans the state of Maine.

  When I contacted Linda, she asked if the caseworker who had physically removed Thorin from his home over two years before could come to the proceedings. She explained the woman had been hoping the best for Thorin since then and wanted to see him on the big day. A few other staff members who had interaction with Thorin also asked to be included. I realized how much of an impact not only Thorin but also all the children in the system had on the professionals who mostly saw the anguish of their young charges and not the celebrations. Aside from DHHS staff, family members, friends, Karen, Jade, and Jade’s foster parents attended. Twenty people squeezed into the judge’s chambers.

  Thorin was wearing the outfit I purchased a few days before: a white oxford shirt, a striped tie, a navy blazer, grey slacks, and black dress shoes. I wore a charcoal skirt with a white linen blouse, and Ward wore gray slacks, a white shirt, a tie, and a navy blazer. We looked dapper and ready to graduate to being a fully legal family.

  The judge’s role was brief, mainly reading legal texts and asking for signatures. He did ask i
f anyone wanted to say anything. I looked at Ward holding Thorin. Thorin had a wide smile on his face. Ward and I had already decided I would say something on our behalf.

  As I looked at everyone who brought us to this moment and those who were sharing in our rite of passage, I could feel the lump in my throat before I started speaking. I blinked away my tears and nodded to indicate I was ready to start.

  “Ward and I want to thank Thorin’s parents for creating him; Jade for saving him; Sherry for caring for him; Linda for knowing he was for us; and Thorin for making us the luckiest parents in the world.”

  The day we adopted Thorin, we launched the blog a typical son: April 1, 2010. My opening post explained why we chose the name a typical son, and I related our first IEP meeting. From then on, Ward and I traded back and forth between posts. The early posts were a non-linear telling of the ways of state adoptions and our experience as new parents. Our readership was mainly family and friends.

  One of Ward’s high school classmates left a comment that expressed the sentiment we hoped to convey: “I used to feel bad for people like you. I thought it must be so awful. Now I’m ashamed, you are like me.”

  Adoption Day

  CHAPTER FOUR

  How I Earned the Privilege of Being Called Mommy

  Thorin’s health did improve when the weather changed, but not as dramatically as we would have liked. I thought we should be more proactive, so I found a pediatrician who had several children with Down syndrome as patients. She was a doctor of osteopathy (DO). Her focus was on using osteopathic manipulation to stimulate a child’s immune system. It seemed perfect for Thorin.

  During one of his sick visits, I asked his pediatrician for a referral. First he snorted, which I took to mean he didn’t respect DOs. Second he said, “If he were normal, I’d say no. But because nothing can help him, I will grant that request.”

  Did he just fucking say that? I didn’t know how to respond. I turned to Thorin, and he reached inside his diaper then brought his hand back out and wiggled his fingers, all the while staring at the doctor. Good grief, Thorin did have balls! I hadn’t seen that kind of male domination since Joe Pesci in Goodfellas.