“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 he 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
