It’s 4/20. Time to Birthday Party.

Duuude, Mary is the big 15 today. She is looking forward to getting a driver’s license in the very near future.

Mary recently competed in the high jump at St. Charles West High School. Peggy took the pics because I was busy chasing Joy, who very quickly found open gates to the track and the parking lot.

Mary in the high jump.
Joy spent Saturday making Easter eggs with Cali. Joy had a blast.

Nice doggie, cont’d

Day 3

Joy has accepted Maya and Lucy. She lies on the floor next to them, scrolling through YouTube videos. She knows that the dogs will not take the phone away. In fact, she knows that Dad won’t take the phone away because she’s 18 inches away from the dogs.

Joy is a very accepting person. She accepts the new house, the new yard, the new dogs, the new neighbors (who are having really bad luck with flat tires). They LOVE that I know how to change a tire. I’ve changed more flat tires over the past two weeks than I’ve changed over the past ten years. But the neighbors are super nice. They sent us yummy banana bread after the first flat tire. They have young children too.

So Joy is very accepting. I think she would accept us adopting a new dog, or even a llama. Maybe a polar bear.

Joy likes the dogs. But her high chair is no longer high enough for breakfast, lunch, and dinner. Now she likes to eat while sitting on the bar stools.

Day 4

Our landlord stopped by to pick up some tax-related mail that somehow did not get forwarded to his new address. He did not alert us that he was stopping by. He rang the doorbell.

“AAARF! WOOOOF! BARRRK!”

I tried to open the front door. Bad idea. I took the mail outside through the garage.

“Hi!” I said. “Nice to meet you!”

“Very scary.”

“The dogs? Actually very nice dogs. We’re dog sitting. You get used to them after two days. Three max.”

I hand him the mail.

“Very nice to meet you,” he said.

“Bye!”

Nice doggie

Day 1.

The dog snarls.

Joy has entered the living room from the front of the house. She is standing in front of Lucy’s crate. Apparently Lucy does not like people entering the crate area from the foyer. I make a mental note.

“Joy,” I say. “Freeze. Leave it.” I’m suddenly talking to my toddler like she’s a dog.

I scoop up Joy and take her back to the foyer, then down the hall. To the kitchen.

“Let’s have some kernpop, Joy.”

We have our snack.

I have become a dog whisperer. When one of the Dogues de Bordeaux gets up from their mat, I whisper to Deb, “Oh my god. It’s coming over here. What should we do?”

“Maya is fine. She loves people.”

Day 2.

Deb is on the floor petting both massive dogs. I back away.

“Be careful.”

Joy trips over the floppy feet of her overlarge 4T onesie and falls, her face suddenly just inches from one of the dogs. I can’t tell them apart. (The twin dogs, I mean; not the dog and Joy.)

Joy smiles. The dog looks at her with that bored look. Oh my.

“Joy. You’re fine, I say. “Just back away slowly.”

Joy pats the dog and pads down the hall.

Day 3… to come.

Happy Thanksgiving

Some people say gratitude is a medicine—that saying “thank you” for every experience is key to good mental health.

And that doesn’t mean we should be grateful or thankful only on special days like Thanksgiving or Christmas. It’s easy (for me) to be thankful for the usual things: for my family, for my health, for hugs from Joy, for kisses from Deb, for my career, for living in a time of peace (the first Thanksgiving America has not been at war in 21 years), for the food on my plate (and Instacart!).

But we should also find a way to say “thank you” for the less obvious things: for the setbacks, for the people who irritate us, for having our life disrupted by a pandemic, for the loss of a job or whatever other problems we might be experiencing. 

That pain in my knees (yes, both knees now)—thank you, it’s making me take things slow.  That 30 pounds of weight gain—thanks for reminding me that I’m not getting enough exercise. That mistake I made—thank you for reminding me to be more careful, for teaching me a lesson.  The pandemic—thank you, for the hundreds and hundreds of days at home with Joy and Deb. Thank you, for showing me what is and is not essential. Thank you, for giving me the opportunity to structure my life around the people and routines that matter most.

Every situation has two handles. You can decide to grab on to anger or appreciation. You can pick up the handle of resentment or of gratitude. I pick up anger every day. But Joy Elizabeth is helping me pick up gratitude more often.

So as you gather around your family and friends this Thanksgiving (or Christmas), appreciate it and give thanks for all the obvious stuff.

Just make sure that when the holiday passes, as you go back to your everyday, ordinary life that you make gratitude a regular part of it. Again—not simply for what is easy to like, but for all of it, for every day.

Joy loves fall

I smooth down the back of Joy’s hair where it has gotten rumpled during her nap. It’s a tangled nest as usual. It’s a dreadlock in progress.

“Joy, can Dad brush your hair?” I say.

“Aaaaarrh!” Joy cries. That means: hell no.

Joy hates to have her hair combed, brushed, styled, stroked, or untangled. We have mild shampoos, good conditioners, many hair care products, soft brushes, ponytail bands, bobby pins, etc. But much of the time the back of her head looks like that of a nomad.

Deb is better at taming Joy’s hair. But it is still a challenge.

“Deb, please help me with Joy’s hair!” I say. “The weather is so nice today. I want to take Joy for a bike ride to the park. If we put her in the high chair, I can do her orthotics and shoes and you can put in a ponytail.”

After breakfast, Joy had hopped down from the kitchen chair, bolted to the kitchen gate, crossed her arms, and stood there with that look: Dad I want to go to the park. But it was too cold at 9 am. So I said no. But now, 1 pm, the temps are much better. We can even go without jackets.

“Let’s go to the bike!” I say.

Joy races to the door and down the steps.

I strap her in, and within minutes we are at the park, running through the leaves to the slides and swings.

Joy is more confident on the steps and ladders. She laughs about every 30 seconds. There are so many leaves to stomp on. How will she get to them all?

Joy in the Tetons

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.

“I wish I could quit you, Jackson Hole.”

“Jackson Hole, I swear…”

Joy Finds a Way

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.

Happy Father-versary

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.

Big and Bendy

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.

Nap time.

You will be vaccinated. Transmission is futile.

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.

Have a great Easter.

Squeaky clean for Easter.