A breathing test was done to confirm what the doctor already suspected: Thorin had asthma. He prescribed a daily maintenance inhaler, a rescue inhaler, plus the continued use of the nebulizer as needed. He also gave us a protocol explaining what symptoms indicated the need for more than a daily inhaler. He said to get rid of the cool air vaporizer, explaining wet air was about the worst thing for asthma.
“Why did our doctor and the hospital recommend it?” I asked.
“Because they aren’t pulmonologists,” he replied.
Then, the pulmonologist recommended we make an appointment to see a pediatrician he worked with regularly. She also happened to be a DO.
The new pediatrician was the complete opposite of Dr. Not-McDreamy. When she entered the exam room, she turned toward Thorin with her hand out and said, “Hello, Thorin! I’m Dr. Peggy.” After they shook hands, she turned her attention to me. The entire tone of the exam was positive toward Thorin. She mostly asked yes or no questions, starting with Thorin for an answer and then asking me for more detail. It was clear she assumed Thorin was competent and could participate. Toward the end of the exam, she asked if we could talk privately. We went to another exam room.
Holy crap, she’s going to tell me something awful.
I must have looked alarmed. She laughed and put her arm on mine.
“He’s okay. He’s great! I wanted to tell you that I know Thorin.”
It took me a second to understand.
“From before?” I asked.
“Yeah, from before. I was a resident at the hospital when he was brought in. I was part of his care team. He was so sick. He was a fighter. Everyone fell in love with him. When we found out he was going back home, we were worried. I didn’t know what happened after that. Then when I saw his name on my schedule . . . I was so happy! I was so relieved! I never stopped thinking about Thorin.”
“You’re supposed to be his doctor!”
“I know!”
Thorin’s health started improving. He still got sick frequently but not in such a debilitating way. He was in school more frequently, bouncing back more quickly. It was then I actually became a bit of a hypervigilant parent. I was so used to taking him to the ER that I started worrying I was being lax. The school called one day telling me he was sick and sobbing. When I got there, someone mentioned his breathing being ragged.
“Ragged? What’s ragged mean to you?” I demanded.
“Not quite right? I don’t know exactly,” she said nervously.
I watched her intently and said, “Do you think he may have trouble breathing?”
“I guess he could have a hard time breathing.” Her response was measured.
That was all I needed to hear. Later, I realized I frightened her. What childcare provider wants to find out a child in her care should have gone to the hospital?
I practically threw Thorin in the car and drove to the ER. He and I walked in together, which should have been a sign he did not need to be there—I wasn’t carrying him in.
“I think my son is having a problem breathing,” I said in a shaky voice at the admitting desk.
The woman looked at me askance—maybe the most askance I’ve ever been looked at. “You mean that boy?” she said pointing behind me.
I turned and saw Thorin dancing up a storm, taking full advantage of the shiny floor in the entryway.
“Gee, he looks better,” I said. “Maybe I overreacted.”
“What do you want to do, Mom?” she asked.
“I guess we’ll just go, then.”
I slunk out with Thorin twirling behind me. I was mortified. As I explained it to Ward later, he suggested this insight: “You can freak out now. You couldn’t then. It had to come out some place. And now you know if he’s dancing, he’s okay.”
When I was merely a hypothetical parent, my theoretical child behaved as I instructed him. I was convinced my deeply satisfying fantasy world as a parent was possible. As a non-parent, I would listen to my friends complain about how hard it was to get their children to go to sleep or stay in their own bed. In my mind, I would judge them for not being able to control their children through the same calm reasoning I had great success with in my imagination.
Once I became an actual parent, I quickly realized that until you have actually struggled to get a toddler to bed, you couldn’t truly understand how devious yet universally predictable toddlers are. How on earth did Thorin know to ask for water, take a sip, and then twenty minutes later say he had to go to the bathroom?
One particular night, Thorin and I were lying on our sides in bed, facing each other. “Going to sleep” had started forty minutes earlier. I had cheerfully read countless children’s books and knew I couldn’t summon the enthusiasm necessary to read about a freaking fuzzy duckling. Instead, I started reading aloud the New Yorker article on Scientology. My mom told me I loved it when my dad used to sing the sports page to me. Thorin kept saying no to the indictments against L. Ron Hubbard, which began to sound like a bleating lamb.
“How ’bout if I sing it to you?”
“No!”
It was then I stumbled upon an idea.
“Do you want to know how we met?” I asked.
My question was met with enthusiasm. “Yesith!”
“Okay! Good! Here’s how it happened. Mommy and Daddy wanted a little boy. One day, we got a phone call from a lady named Linda who said she knew this two-year-old boy who was really great and wanted a family.”
“Me!” he said.
“That’s right! It was you! We told Linda we wanted you to be our son. After that, we thought about you all the time. Soon, you became the only thing we thought about.”
Thorin clapped excitedly.
I asked, “You wondered how we met?”
Nodding his head and laughing he said, “Yesith!”
I had a stab of guilt. Of course any child would wonder how he became part of his family, but most children could ask.
“I should’ve told you before. Okay, so one day, Linda sent me a photo of you. You were so beautiful I cried. Daddy cried, too. I kept your picture in my purse. I would look at it all day. I would talk to you. I would tell you how much I loved you.”
Thorin made a sighing sound.
“Then we finally met you! The rest you know.”
He jumped up and down on the bed. When he stopped, he signed, “Again.”
“You want to hear it again?”
“Yesith!”
The story became a nightly ritual, which Thorin initiated by making the sign for “again” at bedtime. We started calling it the “Again Story.” I realized Thorin was in a position where he would have to wait until I asked him a question to figure out what he wanted to know. It made me wonder what else I was missing. I thought the next logical step was asking him if he wanted to know how Ward and I met.
“Me there?” he asked.
“No, just Daddy and me.”
“No, tanks.”
I wasn’t just experiencing a learning curve on communicating with Thorin but with many of the women at the school. I loved the school, and, most importantly, Thorin loved the school, but I was becoming exhausted by their continual unsolicited advice. The staff got me through his first field trip, assuring me he would be okay. They were sympathetic to his health needs. They administered his rescue inhaler and, if needed, his nebulizer. They made accommodations. Thorin refused to nap, so one of teachers built a little cardboard house over his sleeping mat, and he could play as long as he was not disturbing the other children. He was absolutely safe there.
I just didn’t want to sing “The Goodbye Song” when Thorin didn’t want to leave. When I found out there was also a “Clean-up Song,” I just shook my head.
Who’s writing these crappy propaganda songs? What’s wrong with “Listen here, Mister, you made the mess so help me pick this stuff up?”
When I was a child, my parents often used work experiences to give me context for my behavior. Say, I was running through th
e house screaming, so my dad might tell me, “If you did that at work, it’d be all over with. It’s easy to find non-screaming workers.” That logic seemed fine to me.
I found out from Ward the staff never said anything to him.
“What? Why don’t they tell you what to do?”
“Kari, I’m a man. No one expects us to do anything.”
“That sucks!”
“I don’t take it personally and I’m relieved not to hear the feedback.”
One afternoon when Thorin wouldn’t leave school with me, the speech therapist, who didn’t have children, responded with, “Okay, Thorin, should we walk out of the school like a monkey or roll like a log?”
Roll like a log? No fucking way!
I was not going to be able to watch my son and an adult roll down two hallways and out of the school without my head exploding.
“Okay, no, thank you, we aren’t going to do either one of those.”
I looked at Thorin. “Get up and move it if you want a Popsicle at home.”
“We find bribery doesn’t work,” she suggested.
I wanted to scream, “Shut up!”
I decided against telling her tell I had a bag of M&Ms in my purse in anticipation of tantrums in the supermarket. Rather than peel a screaming, spread-eagled Thorin off the floor, I would lean down and whisper, “If you want two M&Ms, get up now!”
I ended up being thankful for that ludicrous exchange with her because it got me to finally talk to Louise, the school director.
“I know you have our family’s best interest at heart. I really, absolutely know that. But if I don’t ask for advice or a suggestion on how to deal with Thorin, please have your staff refrain from offering it.”
“Who did that?”
“All of you!” I responded too harshly. “I mean most of you. Actually you do it, too, Louise.”
It was a couple years of resentment coming out at once.
“I do? I’m so sorry!”
“I should have said something before. I’m sorry, too. I still want to ask for your advice. I value it.” Then I told her about rolling like a log.
“Oh, no. The monkey isn’t bad but . . .” She looked at the expression on my face and continued, “But if you don’t want to be a monkey, it’s bad.”
We both laughed.
“Don’t worry about this. I’m going to take care of it!”
And she did. The unsolicited advice stopped.
I thought we were on an even keel at school until one morning I brought Thorin in to find out Mindy had left without putting in any notice. Thorin was beside himself, and my heart went out to him. He really did love her and not being able to say goodbye was difficult. He couldn’t articulate it, but what I saw was the pain of abandonment—something Thorin was all too familiar with. He would tear up when he asked about her, which was constantly. I asked Louise if she could contact Mindy to send a note addressed to Thorin at the school. Louise didn’t have any luck. Thorin needed closure. I didn’t see any other alternative but to send Thorin a card as Mindy. To make my card believable, I mentioned a couple of things I knew they both loved.
Dear Thorin,
This is Mindy. I’m sorry I left without saying goodbye. I had a chance to go live with some elephants on an elephant farm and sing songs all day. You know how much I like elephants and singing. I hope you can forgive me for leaving without saying goodbye. I miss you. I love you.
Mindy
Thorin was thrilled to hear from her. She had no longer disappeared from his life; she hadn’t abandoned him. He was able to understand she had this irresistible opportunity that prevented her from seeing him.
My family had a relative on my dad’s side who went to the “big house” for stealing nurses’ purses. That’s how my mom would bring it up to my dad when denigrating his side of the family: “Well, your half-brother went away for stealing nurses’ purses.”
I first noticed Thorin might also have an issue with taking things that weren’t his while waiting in an exam room at one of his doctor’s appointments. While I sat in a chair reading a magazine, Thorin sat on the floor pulling out the contents of his backpack. He would briefly inspect the object then set it on the floor to pull out something else. I saw diapers, a package of wipes, a Lightning McQueen glove I didn’t recognize, some loose Goldfish crackers, a sumo wrestler doll, a light blue marker I had been missing, and a crumpled piece of paper that I picked up and read. It was a note I had missed from one of his teachers at school: “Thorin really likes chicken fingers!”
I might not have given much thought to my marker or a stray glove, but next Thorin pulled out a laminated photo I immediately recognized as one of his classmates. The photo of her was the one that had been affixed to her cubby at school. I leaned down to pick it up.
“Did, you take this from Chloe’s cubby?”
Thorin smiled and grabbed it back, putting it in the bag. The next day, I secretly reattached her photo to the cubby because I didn’t want the teachers to know Thorin might be a kleptomaniac.
The following week, I found Chloe’s picture was stuck to one of Thorin’s hats as I pulled it out of his backpack.
“Please stop taking Chloe’s photo. I’m the one who will get in trouble, not you.”
In response, Thorin pretended to twirl a fake mustache.
Where did he learn that?
At another doctor’s appointment, he stuffed a handful of Viagra brochures into his bag while I was reading People magazine. I didn’t discover his haul until we got home. When I confronted him with them, he pretended he didn’t know anything about it. With all these doctors’ appointments, I wondered if “nurses’ purses” were just around the corner. I didn’t bring the brochures back, probably giving false hope to some drug rep.
Thorin would often go to work with me after I picked him up from school. He would get bored in the office and leave to visit Patty, the receptionist for our floor. One morning after Thorin had visited the day before, Patty came into my office to ask if I borrowed the master key from her desk. It was a fair question: I had locked myself out of my office several times and even once with Thorin in it. I told Patty that I didn’t have the key.
The key would be hard to miss. It was attached to a six-inch, red and white, wooden bowling pin by two feet of beaded chain. The search for the master key went on for three days. Patty talked to scores of tenants. She was getting pressure from the landlord who would soon have to rekey the locks to all the offices. Patty came back to talk to me a second time. This time she closed the door behind her.
“Listen, I want you to check Thorin’s backpack for that key.”
“You do?” I said innocently even though her question prompted me to immediately suspect Thorin of the crime.
“Yes, I do. He took that girl’s photo and all those Viagra brochures! I just bet he took that key!”
I made a mental note to never tell Patty anything ever again. Why hadn’t I considered Thorin was the likely suspect? I could imagine him eyeing the bowling pin thinking how great it would look in his backpack. Patty reminded me twice before I left to look in his bag, as did the landlord. I promised to call either way later that day.
The first thing I did when I got to the school was look in his bag. There I found the master key wrapped in a Star Wars T-shirt. I decided to confront him unexpectedly with the evidence. I thought the element of surprise might unnerve him. My opportunity came on the drive home at a red light where we were about thirty car lengths back. I would have sufficient time to interrogate him, and he wouldn’t have anywhere to go.
I reached in and pulled out the master key, turning in my seat and giving it my best bad cop tone. “Look familiar to you, Thorin?”
I saw the recognition in his eyes, and then he made the double thumbs-up sign as he kicked his legs excitedly.
“Thorin, you got your friend Patty in trouble!”
That only elicited belly laughing. When he finally stopped, he gave a contented sigh as he turned
to stare out the window the rest of the ride.
After we got home and Thorin was in the other room, I put the master key on a table out of his reach and line of vision. The next morning it was gone! How did he know where it was? Had he read my mind? Crap! I had already called the office to say I would return it.
I looked in his backpack, aka his booty bag, but it wasn’t there. Where did Baby Face Nelson put it? It was useless to ask him. I knew I couldn’t break him. I had to think like him.
Okay, I’m a criminal and I am on the short side. Where would I put a valued possession?
After a thorough search, I found the bowling pin under the sink in his play kitchen. I knew he was on to me. I didn’t say a word to him.
Ward and I decided to stay on top of his questionable tendencies by calmly addressing the occurrences as they happened but not make a big deal out of it. We saw it as a phase. I wrote about Thorin’s kleptomania and the master key incident on the blog. I thought it was a great example of how typical Thorin could be developmentally. We decided not all the examples of Thorin should be shining examples of human behavior. We weren’t interested in creating an emblematic personality but relating Thorin’s complexity as a human being through real life stories. It also belied the stereotype that children with Down syndrome weren’t capable of guile. Ward and I found Thorin could be as cunning as any child.
Soon after I posted the kleptomania story, Ward heard from one of his relatives who shared, “You should be concerned; Kari thinks this kind of thing is funny.” Everybody’s a critic.
Something that was truly not funny was how often Ward and I argued. The glow of parenting had been replaced with the stale plot lines of any sitcom where the husband and wife quarrel about division of labor. Except in our case, unfortunately, it was more of a melodrama. I was so desperate I even bought What Shamu Taught Me about Life, Love, and Marriage: Lessons for People from Animals and Their Trainers. The author used animal training strategies to get her husband to pick up his clothes and stop bothering her while she was cooking. It fell apart for me almost immediately because I forgot how much I objected to places like SeaWorld, plus her strategies reminded me of the “positive parenting” ideas I had been bombarded with at the school.
Not Always Happy Page 11
