On Saturday, September 18, we piled into the van and drove north from Jackson Hole in search of a young couple, a pretty young woman and her fiancé. You’ve likely heard about them. We left early because rain was forecast for this area of the Grand Teton National Park, and we were given intel that the pretty young woman would be found in a remote area outside Moose, Wyoming. We left the main highway and drove off road for miles. Finally, we bounced down a winding stretch of gravel road and skidded to a stop.
A dozen vehicles and a hundred or so people were gathered among scrub brush. We could see Indian paintbrush and the jagged Tetons in the distance. Such a beautiful place, I thought. These people were waiting for one man to speak, and almost everyone was using their smartphones as cameras. We joined the crowd and waited, as well.
The young woman was nearby. I could feel it.
Then I saw her: Katie Payton in white walking arm in arm with her mom toward her groom, Dave, who was standing under the handmade wedding arch, smiling.
Katie and Dave were the prettiest couple you ever saw. And in spite of the rain, the reception was the best ever. Joy danced the night away.
This was my first trip to Wyoming. Jackson Hole is the DisneyWorld of the Rockies. Except there is no Mickey Mouse and you can drive inside the park.
There’s a scene in Jurassic Park in which Jeff Goldblum’s character (Ian Malcolm) explains why the entire project is flawed. There is no way, he says, to keep the dinosaurs contained and under control. No way to keep the dinosaurs from reproducing, even if they lack the chromosomes to do so.
“If there’s one thing the history of evolution has taught us, it’s that life will not be contained. Life breaks free, it expands to new territories, and crashes through barriers painfully, maybe even dangerously, but, uh, well, there it is. . . . Life finds a way.”
In 2018, the McConnells come to understand that Ian Malcolm is still correct.
Life indeed finds a way.
Like a salmon that swims up river and jumps the waterfalls, Joy (aka our little T. rex) found a way into our life.
Joy came into our house and transformed it into Joyassic Park. Joy’s clothes outnumber my clothes 10 to 1. On the way to the bathroom at 3 am, I click on the flashlight on my phone so that I don’t trip over the Fisher-Price penguin or the Elmo chair or the giraffe bike or the alligator pillow.
Although Joy’s vocabulary is limited, she finds ways to communicate. She uses a combination of sounds, sign language, singing, smiles, kisses, claps, dances, waves, shaking her head, and giving knowing looks.
6:15 am. It’s hop on pop time, with giggles. Joy then drops her toy on my bed. She kisses my forehead. (Translation: Good morning, Dad. Here, turn on Sloth.)
“Joy, can you get me a diaper?” I say. Joy heads for the dresser. She brings back one size 5 diaper.
I turn on Sloth and Hedgehog. I get a kiss from Joy. (Joy believes that the correct number of kisses for Mom and Dad is around 200 per day. I have no intention of telling her any different.)
I change Joy’s diaper. I dress Joy in shirt and shorts. Joy carries Sloth and Hedgehog to her table. They sing songs to Joy.
6:45-7:00 am. It’s hop on pop time again. This time with the sign for “eat.” Joy has me follow her to the gate. I get a kiss as I carry Joy downstairs.
Joy walks to the kitchen. She picks up the computer mouse from the kitchen table and clicks. She points to her high chair. Kiss.
I type in the password and hoist her into the high chair. Kisses. We watch some YouTube videos while I make some breakfast. I give Joy a glass of milk, juice, some mini wheats, grapes. The waffles are in the toaster.
We sing songs. We sign the songs. Kiss-kiss. High five.
I make coffee. Toast bagel.
We eat, sing, laugh. Before it gets too hot outside, I ask Joy if she wants a bike ride.
She smiles and heads to the backdoor.
As we enter Sanders Park, Joy vocalizes and claps. (Dad, I want to do the slide!)
We do a two-mile ride most mornings. We also do a ride in the evenings. Joy likes to walk through the grass at the park, hop on the manhole cover (I’m not sure why), walk over the wood bridge, and look down at the creek. If we pass anyone, Joy says “Hi” and waves.
Back at the house, Mom is making egg sandwiches or getting ready for Joy’s therapy. Mom takes care of Joy’s bath and brushing Joy’s hair. She puts Joy’s long hair in a ponytail. Then Mom puts on the orthotics and Joy’s socks and shoes.
Inside the house we have gates, doors with locks and chains and latches. The cabinets have safety locks. The high chair and stroller and car seat and wagon and bike trailer have seat belts. Like the velociraptors in Jurassic Park, Joy is systematically testing the gates and locks for weakness.
We are on high alert because our little T. rex needs to be contained.
Father’s Day fell on my wedding anniversary this year. I had to decide whether Deb had any say in where we went to lunch. Actually, Deb graciously let me pick. The restaurant I picked was packed: the line was out the door. So we went to White Castle instead.
I love White Castle. I’ve been eating there since I was five. My sister and her hubby have worked for White Castle Corporation since the early nineties. They met there. In April and May, St. Louis White Castle locations sponsored a “Round Up for Down Syndrome” event to raise money for The Down Syndrome Association of Greater St. Louis. I think they raised over $16,000. That’s around 32,000 people generously donating an average of 50 cents. And to be fair, Penn Station raises even greater amounts for DS.
Later in the day, I did a bike ride with Joy. I buckled her into the trailer and zipped up the mesh screen. As we did our leisurely route through Sanders Park, I noticed an older couple sitting on the playground equipment.
The woman I recognized immediately. I don’t know her name, but she lives on Sanders. I often see her walking (with the aid of a walker) along the sidewalk, talking to neighbors. Always smiling. She has a Toyota in her carport that looks identical to the 1983 or ’84 Tercel driven by Jesse Pinkman in Breaking Bad.
The man she was sitting with turned to me as I peddled along.
“Hello there,” he said.
“Good afternoon,” I said. I applied the brake and stopped. I put my feet down.
“What is your daughter’s name?”
“Her name is Joy.”
“That’s what I thought,” he said. “She’s a cutie.”
The Toyota lady said, “I bet she loves riding on the bike with Dad.”
“Yes. She’s always up for a bike ride.”
We chatted a few more minutes before I said goodbye and pedaled down the trail.
On the way home, I kept thinking how odd it was that the man said he knew Joy’s name. “Her name is Joy”… “That’s what I thought.”
What!? Why would he say that? As I turned the corner onto Big Bend, I realized I was wearing my CHOOSE JOY t-shirt. The shirt is a riff on Wham’s CHOOSE LIFE t-shirt that featured prominently in the music video for “Wake Me Up Before You Go-Go.” The type is so large, you can read it from a block away.
By the way, I had too many copies of this shirt printed. If anyone you know would like one, just send me a message with size. I will even mail for free.
We rent. If I owned this house, I might not change much, but I think I would put up a fence around the backyard. Not to keep people out of my yard. But to keep Joy from exploring beyond the boundaries of the property.
Aesthetically, my yard is pleasing—in part because there is no fence on either side. Looking east, I have unobstructed views of my neighbor’s fire pit with the pretty string lights around the seating area. On the other side of the yard, I can see my western neighbor’s gorgeous trees and lawn and plants—not to mention the beautiful mansion of a house they lovingly tend to.
But my backyard is 60 feet from Big Bend, four lanes of big bendy road that snakes from Clayton through Maplewood, Shrewsbury, Webster, Crestwood, Oakland, Kirkwood, Twin Oaks, and Ballwin. Ten thousand cars a day travel 40 miles per hour past my tiny front yard. (We never play in the front yard. Ever.)
A few days ago, we went out to play in the backyard. Joy was soon bored with the wading pool and the water table. She wanted to run on the concrete driveway, which at that time of day was easily over 115 degrees. I chased Joy with the water hose, spraying the concrete around her bare feet so that every step she made was on cool, wet pavement. Joy giggled the entire time, certain it was a game. I’m sure I looked silly, but I couldn’t bear to have her feet burned for one second by the sun-soaked pavement.
But the pool and the sun and the heat and the bees are not the danger. The danger is Big Bend. Deb and I are hypervigilant when outside with Joy. No phone calls or checking email. No talking to neighbors. No trimming the hedge. Just. Watch. Joy. Because 60 feet from the backyard is a real-life game of Frogger.
Almost every day, Joy and I go to the park. I put Joy in the bike trailer and I pedal three blocks to Sanders Park. I unbuckle my girl and let her run through the manicured grounds, where the hazards are mosquito bites, dog poo, skinned knees, and sunburn.
Happy Easter. We have something of an Easter miracle to announce: I will be receiving my first dose of the vaccine tomorrow, Easter Monday, at the Down Syndrome Association of Greater St. Louis. I will then go about my life, still avoiding most people, still wearing a mask. I will get a second shot in three weeks, followed by two more weeks of social distancing. Then I will patiently wait for everyone else I know to get their shots. Yay.
Joy is in my presence or a room away practically 24/7. (I do sometimes spend a day or two at the Airbnb in St. Charles, alone, editing.) She is becoming more vocal, more giggly, more outgoing and funny, and I love getting a big “Hi!” a few times every day. She often sits in front of the mirror and tries out new sounds and phrases: eye-oooo, baaaah, laa-laah-laah, daaaaah, oooooo, acccckkkss, bah-roooo, ooooooh, eeeeeeek, maaaaaa-ma, heeeeee. She also likes to try out new dance moves. We are working on choreography to “Gangham Style.”
Her vocalizations also include “Ah, Ah, Ah, Ah,” which means “Dad, queue up some songs on your phone, then give me the phone.” iPhone in hand, Joy scrolls through the YouTube’s recommended videos and taps (mostly randomly) until she hears something she likes. Joy’s favorite YouTube videos include a sign-language version of “One Thousand Years,” anything with Harry Styles, Rick Astley’s “Never Gonna Give You Up,” and some auditions from Britain’s Got Talent.
She does sign language for “eat breakfast” or “eat lunch” and “more milk” and “play the ‘one step closer’ song.” Music is big in our house.
My favorite Joy sounds are her giggles and the sound of her breathing as she sleeps. Joy often falls asleep in someone’s arms for bedtime or naptime. I love when that someone is me. Her head is typically on my arm or shoulder. She likes to hold my hand or a finger as she gets sleepy. And her regular breathing always puts me to sleep, too. When I wake up hours later, her head is on my arm and my arm is asleep.
Joy’s favorite snack is popcorn and chocolate milk, but she hates that the popcorn takes two minutes and 28 seconds to prepare. Then several seconds to cool.
Joy always has a good day. Any seeming crankiness or crying means: I’m hungry, I’m tired, I’m thirsty, or I don’t like ads in my YouTube videos.
On January 20, 2017, I watched the inauguration highlights on my laptop in my very small apartment on Main Street. I had just finished editing a business self-help book called Good People. In addition, a few days earlier, I had turned my apartment into a part-time Airbnb. I was single and an empty nester.
On January 20, 2018, at around 3 am, I clocked out of my sorting job at UPS, and on my way to Deb’s (my girlfriend’s) apartment picked up some White Castles. On the drive to Kirkwood, I listened to Rachel Maddow: the government shutdown . . . leaving the Paris Climate accords . . . a women’s march . . . Mueller.
On January 20, 2019, Deb and I signed up our daughter Joyce Elizabeth McConnell for occupational therapy. Joy was five weeks old. This was not the first Joyce McConnell in my life. My mom’s name was Joyce McConnell from 1960 until 1989 (except for a six-month period in 1978-79). (In early February 2019, I would quit my job at UPS.)
On January 20, 2020, the first confirmed case of coronavirus (COVID-19) in the United States was diagnosed in Seattle. The patient was a man who had recently returned home after visiting family members in Wuhan, China. Coincidentally, I had a severe cold and was weak and miserable for weeks. Joy was starting to pull herself up to sit.
Today, January 20, 2021, I felt a tremendous sense of relief. Although 400,000 Americans have died of COVID over the past year, the vaccine is now available to some Americans. The pace of vaccinations is going to accelerate. At 8 am, I took Joy downstairs to breakfast. We watched some music videos after breakfast. We had occupational therapy at 11 am while Joe Biden was being sworn in. Later, I watched the highlights of the inauguration, with Joy on my lap and joy in my heart.
Two weeks ago, Deb and I took baby Joy into a Walgreens at 11 pm to buy summer clearance items and Tylenol. Deb printed out some coupons as I wandered (with still-awake Joy in her car seat on top of my grocery cart) over to the summer items that were up to 90% off. Flip-flops were 70% off. Pool noodles were 80% off—just 49 cents each. I grabbed all six of them.
Deb wandered around, looking at discounted shampoos, conditioners, and makeup. After twenty minutes, Joy and I were ready to go. Finally, Deb agreed to check out.
We wandered over to the cashier, an elderly woman who was quite chatty. At first, I paid little attention to what she was saying. I handed her one noodle and told her I had five more in my arms. She scanned it six times and then began tapping Joy on her bare feet with the five-foot noodle.
“Does that tickle your toes, baby? Look at that smile.”
Deb and I smiled.
“Does he walk and talk yet?” asked the cashier. “The reason I ask is that I have a friend who is basically in the same situation as y’all. Her baby doesn’t walk or talk yet.”
Deb said, “Well, we have a girl. Her name is Joy—”
“Oh, a girl!” The cashier again used the noodle to tap on Joy. “Oh! Oh! Haha!”
Does this woman not realize that I have five noodles in my hands and could start tapping HER at any moment? I thought.
I look at Joy for hours every day, and I almost never see or think Down syndrome. I think it irritated me that the cashier had looked at my baby for five seconds and saw the “same situation” as her “friend.” And apparently the “situation” wasn’t having the most loving, most beautiful baby in the world. The situation was a delay in walking and speech.
But I was calm. I thought: What would Joy do? Joy would smile and give a hug. So I smiled. I held the noodles tight in my arms.
Joy fell asleep on the way home.
A few days later I used one noodle as packing material for a large item we sold on eBay.
The box was 42 x 24 x 24 inches and weighed 73 pounds. The box would not fit in my car. So I put it on a hand truck and walked it to the UPS Store, which is 0.9 mile away, on Watson. And, yes, I walked back with the empty hand truck. Then I had a nap.
Joy can walk now. She typically takes twenty steps before she sits down. I call that walking. That’s about how many steps I take before sitting down.
Joy can say a few words, too. She says “hi,” “Dada,” “Ah ah ah ah,” and most recently: “I oooo!” (I love you!)
“I oooo!” almost always follows one of her wonderful kisses.
Just around the corner from our house is a small three-room house on Sanders. Melvin, the owner, sits on his porch every day and waves as I pull Joy’s wagon along the sidewalk.
Yesterday was Melvin’s birthday. Neighbors stopped by in the early evening and stood on his driveway (ten feet away from each other and from Melvin), chatting, wishing Melvin a happy birthday. Signs and balloons decorated his yard and porch and carport. He offered chips and sodas to everyone who stopped by.
I stopped by at 6:40 pm.
“Happy birthday, Melvin,” I said.
“Do you want a sodie?”
“I’m good. Thank you. So you were born in 1924?” I said, reading a sign on the lawn that said: MELVIN IS 96!
“I’m ninety-six,” he said. “Got chips too.”
“Yes, sir. Were you in the war?”
It occurred to me later that my uncle Otto Jr., my mom’s older brother, would have been born in 1924. I Googled it. Yep. Born in 1924. Died in April 1942. In the South Pacific. The precise place where he was killed was classified during the war. I think it was American Samoa.
A few months ago, as I was moving boxes in the basement, I came across an American flag folded in the shape of a triangle. It’s the flag that draped Otto Weiner Jr.’s steel casket on a rainy day in May 1942. Due to a clerical error, his body was shipped 12,000 miles to his hometown (St. Louis) for burial. This was the first burial in home soil of an American killed in action in WWII. An article in Time magazine (June 22, 1942) reported that Private Weiner was “a favorite of the native chief. When he died, the natives held a tribal ceremony. They wove a tapestry of bark and sent it along for his parents.”
My mom was just two and a half years old when Private Weiner shipped off to fight in the war.
My mom’s sister Jean was born in 1932. Exactly one year ago, we went to Jean’s house for lunch. She wanted to meet Deb and Joy.
I sat at her kitchen table and looked around at the house where she has been living since the 1950s. Everything seemed so much smaller than I remembered it.
Of all the six sisters, Jean is the one who looked most like my mom when I was growing up. A lot like my mom. They have the same laugh. The same hair. The same smile.
Aunt Jean sat next to Deb and they chatted quietly while I talked to my cousin Patty. Doug and Chrissy and Emily and Paige were there, too. Joy got passed around the table until she fell asleep.
I looked over at Aunt Jean and Deb talking, baby Joy falling asleep in Deb’s arms, and for a second I saw my mom talking to Deb. I could, for a moment, imagine what it might have been like to have had lunch with Mom and Deb and Joy at my mom’s South City home. “Hey, Mom. This is Deb, my wife. And this is Joyce Elizabeth. Do you want to hold her?”
Jean has since moved out of her home and into a nursing home, where visitation restrictions will keep most family from being able to see her in person. I hope I can stop by soon to see her (and my mom).
Is there anything sweeter than having a baby girl fall asleep in your arms? Spoiler alert: Nope. I will admit that it’s typically not a priority when I’m on deadline. But it is a real treat to lie down with Joy, turn on a repeat of Holy Redeemer Sunday Mass (on YouTube), and watch Joy watch Father Kevin give the homily and sing and offer post-Covid communion (no wine; host is placed in the hands of the faithful who are wearing masks).
Joy’s eyelids become heavy and flutter. Her head falls back onto my arm. And then I hear it: the regular breathing, with just the tiniest snore. I know that in about ten minutes I can (if I want to) safely extricate myself. But often I lie there much longer, until my arm (or my entire body) falls asleep. I look at her sleeping and realize that nothing will happen this week that will bring me greater joy. I wouldn’t change her (or this time together) for anything in the world. But of course we need to change the world for her. For all our kids.
In other news…
Joy is taking steps. Four in a row, sometimes five. And she is growing taller every day. She can reach items on the kitchen table (like a bowl of cereal). She can reach items on my desk (like my dictionary and pencils). She can now open the shower door and exit the shower while still covered in suds. Joy has lots of showers and baths (maybe three a day).
And Joy likes to throw her toys. Her balls, her blocks, her elephant, and the hedgehog. She throws Mother Goose while Mother Goose is talking. Yes Joy is a thrower.
Sometimes I am awakened in the morning because Joy has thrown my smartphone into the side of my head. “Hey!” she says as I rub my temple. I’m not sure if she wants breakfast or just wants me to unlock the phone.
I clean floors every day. I clean the kitchen floor after she throws Cheerios or crackers or hot dog across the room. I clean the carpet when she throws my half-empty/half-full coffee cup on the floor. She threw a can of polyurethane last week, which popped open on impact. That was a mess.
I am home a lot. Maybe too much. I haven’t put gas in my car since early June. I do go to Schnucks once a week. I had been using Instacart, but the prices began to annoy me. Things that are on sale in-store are not on sale on the app. The Instacart shoppers are mostly great, but I don’t like green bananas, and sometimes their substitutions make no sense (tuna salad and broccoli salad are two different things, for example).
We get Amazon deliveries almost every day. (Vaseline, kid cups, and hand soap are arriving tomorrow. Diapers and Cheerios on Thursday. Amy’s Organic Chili on Monday.) We’re even buying clothes online now because “trying it on” is suddenly an antiquated custom. In the post-Covid world, you will get kicked out the bank for NOT wearing a mask.
Joy seems fine with staying home 24/7. She never gets tired of Mom and Dad being home 24/7 either.
Today is my mom’s birthday (she would be 81). As I posted on Facebook today:
In 1939, the movie Gone With the Wind was released. In 1939, Hitler prepared to invade Poland. On July 2, 1939, the St. Louis Browns defeated the Cleveland Indians 4-3. On July 2, 1939, the carving of Theodore Roosevelt was dedicated at Mt Rushmore. And the most significant event of July 2, 1939, was that Gertrude Weiner (my grandmother, who in 1939 was 42 years old) gave birth to twin girls in a small house at 4760 Heidelburg Avenue. Joan Bobby Weiner and Joyce Louise Weiner were born about 15 minutes apart.
Baby Joy is named after my mom and Deb’s mom: Joyce Elizabeth. But we call her Joy 99 percent of the time.
Every time I paw through my desk drawer for a pencil and see Joy’s Social Security card (“JOYCE MCCONNELL”), for a moment I think, Why do I have Mom’s Social Security card?
Joy is still getting her therapy—physical, occupational, and now speech. All of it by Zoom or FaceTime. It’s not ideal, but we are trying to make it work.
Two weeks ago, Deb stayed at a hotel while we anxiously waited for her Covid test results to come back. (“I’m sure it’s just a cold,” Deb said.) Before she took off for the hotel, she put on a face mask and lay down with Joy until she fell asleep. Actually, they both fell asleep.
And yes it was a cold. A cold that everyone in the house eventually caught.