“DAAAD! Chips!”

I work in the quiet room at the library most days. Some days I’m away from home for ten hours, and by the end of the day, I miss Joy and everyone else at home.

When I finally walk through the door, dinner is usually either still on the stove or already on the table. We eat, talk about the day, and then—often before I’ve had much time to settle in—I hear it.

“DAAAD! Chips!”

“Chips” does not simply mean chips. “Chips” means: Dad, get your shoes on. We are going to Dollar Tree.

This has become one of our evening routines. We go often enough that I suspect the Dollar Tree staff may call the police if we fail to show up by 9 p.m.

We hop on my three-wheel passenger trike. Joy puts on her pink helmet and buckles herself into the bench seat behind me. I flip on the headlight and tail lights. Dollar Tree is about a half mile away. We get there in about 5 minutes.

When we walk in, Joy gets the cart. I follow.

First stop: the chip aisle, naturally. Usually Pringles, despite the fact that we currently have at least six cans of Pringles in the pantry. Then health and beauty, where we may need Band-Aids whether anyone is injured or not. Then toys: Play-Doh, cheap dolls, assorted plastic objects that will be underfoot by tomorrow morning.

Then food: tuna packets, Red Vines, ketchup, off-brand drinks, and whatever else catches Joy’s eye.

Finally, we make our way through the household section for facial tissues, paper towels, disinfectant wipes, and other things that allow me to pretend this is actually a practical shopping trip.

One of my favorite things is simply watching Joy shop. She pushes the cart with purpose, perhaps a bit too fast for safety, examines the merchandise, makes decisions, and occasionally stops at one of those little price scanners to check what something costs.

The answer is usually $1.25. But Pringles are $2.50. She takes the whole process very seriously.

Which brings us to money.

I use a credit card for almost everything. I rarely carry cash, and Joy almost never sees me paying with actual bills.

But today Deb sold a few things on Facebook Marketplace, so for once we had a little stack of cash sitting on a side table in the living room.

Until Joy found it. She seemed to know instinctively that she had discovered something important.

Within moments, she was making it rain like she’d wandered into a strip club. Mom got some. Aunt Ashley got some. Fives and twenties were being handed out with remarkable generosity.

But of course Joy kept most of it. She stood there clutching a fistful of bills and waving them around like she had just won the lottery.

And I kept thinking: How does she even know what this is?

I’ve never really shown her money. She has play money for her ice cream stand, but it’s smaller, different colors, and looks nothing like actual U.S. currency.

Yet there she was, a seven-year-old, holding a wad of cash and looking exactly like someone who understood that life had suddenly taken a very favorable turn.

People sometimes joke that kids think money grows on trees.

Joy apparently has an even better system: Money simply appears on the living room table.

And when it does, you grab as much as you can, give a little to the people you love, and start planning your next trip to Dollar Tree.

Which, I assume, will be tomorrow.

“DAAAD! Chips!”

TikTok Star

Joy has had a pretty great summer.

For the past few weeks, her aunt Ashley has been in town and spending a lot of time at our house. And when your aunt happens to be a TikTok star with about 40,000 followers, there is a fairly good chance you are eventually going to find yourself appearing in a few videos.

Joy has now entered the TikTok universe.

And apparently, people like her.

Her appearances in Ashley’s videos have been getting plenty of likes and comments, so perhaps we have a future TikTok star on our hands. Joy certainly seems comfortable with the medium. Give her some music, a snack, and an audience, and she is ready for production.

Her specialties so far include dancing to Billy Idol and eating snacks with her aunt while the camera rolls.

The results are hilarious.

There is something especially funny about watching Joy realize that a camera is pointed at her. She doesn’t suddenly become shy or self-conscious. If anything, she becomes more Joy. There is dancing. There are expressions. There is serious attention paid to whatever snack happens to be involved. And Ashley, who knows exactly how to capture the moment, keeps the whole thing rolling.

I’m including a couple of screenshots from their recent collaborations as well as the movie poster for Joy’s new movie.

I have no idea whether Joy understands that thousands of people may be watching these little moments. I suspect she mostly understands that Aunt Ashley is here, the music is playing, snacks are available, and everyone seems to be having a good time.

Which, come to think of it, may be the healthiest possible approach to social media.

So stay tuned.

Billy Idol. Snacks. Joy. Aunt Ashley (@ashleypayton9 on TikTok).

The ingredients for TikTok fame are apparently all in place.

Keeping Up with Joy

Joy is hula-hooping now, and she is very good at it.

At first, she didn’t quite get the hang of it. The hoop would go around her waist maybe one or two times, then drop to the ground. But she simply would not give up. She watched her sister doing it and decided, in the determined way Joy does, I want to do what Sister can do. And so she kept trying.

Now she’s got it. Those little hips really go.

Watching her learn has been a reminder of how much can be accomplished when someone refuses to be discouraged. Joy did not stop to wonder whether she had natural talent. She did not whine about how hard it was. She just kept at it until the thing that looked impossible (to me) started to look easy.

So I’m inspired. I may have to get an adult-size hoop and see whether I can keep up.

In the meantime, I’ve taken up running. I started in October, and my times are getting better. I recently ran a 5K in 34.5 minutes, which felt like a real achievement for me. Part of the reason I’ve stuck with running is that it’s fun. Part of it is that it’s great exercise. And part of it is pure necessity.

Joy likes to take off from the front yard and sprint down the street with no concern whatsoever for cars, dogs, or my increasingly urgent insistence that she stop. She just laughs and keeps running. So someone in this family needs to be able to run an eleven-minute mile.

At the moment, that someone is me. And more than once I have had to catch her and carry her home.

Between Joy hula-hooping and Joy bolting down the street, she has become both my inspiration and my conditioning program. She is a reminder that hard work and determination can pay off.

A seven-year-old can become an expert hula-hooper. And a sixty-four-year-old can train to run faster than a seven-year-old.

Joy sees something she wants to do, and she does it.

I see Joy in the distance, and I run to catch her.

It’s beautiful, really. One of us is running straight toward joy. The other is running straight toward Joy before she reaches the corner. For now, that seems to amount to the same thing.

Home. Sick.

Joy has been sick for over a week—home from school, bundled in blankets, moving slowly through her days. I thought I was immune. I had the flu shot. The COVID shot. Daily vitamin C. I figured I was covered.

For eight days, I’ve wiped her nose, cleaned up her vomit, spiked her orange juice with liquid acetaminophen, and let her kiss me anyway. And I felt fine.

Today, I’m not so fine.

But that’s life with a first-grader.

Even when she was clearly feeling awful, she still wanted to do alphabet puzzles the moment she woke up. We do them every morning. It’s our routine. If I make a mistake—like putting the letter V in the A slot—Joy simply picks it up, places it where it belongs, and moves on. She never scolds me. She never comments. She understands that mistakes happen.

I love that about her.

After puzzles, we play with the volleyball. Then it’s Cheerios and orange juice, though her appetite hasn’t been quite the same.

When we lie down for nap, she tickles my toes for five whole minutes. She does most of the giggling.

Tomorrow, she’ll likely go back to school. I’ll probably crawl back into bed at 8:22, right after she gets on the bus, grateful for the extra sleep.

But I’ll carry the week with me.

The puzzles and the volleyball. The Cheerios and orange juice. The way she fixes my mistakes without a word, as if kindness is the most natural thing in the world. The sound of her laughter when she tickles my toes, joyful and unrestrained.

These days don’t last forever. Neither does the sickness.

What remains is the knowing—that even in the small, uncomfortable stretches of life, there is so much love. Enough to fill a week at home. Enough to carry us both forward.

Joy’s ABC Song

Joy loves the ABC song. She sings it every morning.

Ay bee sea dee eee eff gee

aitsh eye jay kay

ella minnow pee

cue are ess

tee you vee

dubya eks why and zeeee…

Now I know my ABCs…

This morning I started thinking about what Joy would include in a children’s book about the ABCs. I thought Joy might say: A is for ABBA / The rock and roll band / A is for Apple / A fruit I can’t stand.

But “ABBA good, Apple bad” is not the right message. So I have taken a different approach. Let me know what you think. What are some other words that are important to Joy and others like her?

Joy’s Book of ABCs

A is for Able,

I can do that.

I can spell words

Like ME and CAT.

B is for Birthday

A day of cake and ice cream

A day of fun and family

And hugs and nice dreams.

C is for Chromosome

I have an extra one of those.

But I still have ten fingers

And ten beautiful toes.

D is for Down.

Which is often a negative word.

But when you add Syndrome,

It means Best in the World.

D is for Different

I’m just different from you

Because I’m unique

And you’re unique too.

E is for Equal and Everyone,

Which means for everybody

Like having a home and a school

And a place to go potty.

Tune in tomorrow for F, G, and H.

A Letter from a Mom

A while back I received a letter from a reader.

Hello,

This is a strange thing to write in this comment box, but I have a daughter with Down syndrome, and she’s named after your daughter Joy, even though I’ve never met her or you. Let me explain.

My other daughter was in Joy’s class at Meadows when I was pregnant and we got the news that she would be born with Down syndrome.

It was an emotional time for me, and one day I noticed Joy (I didn’t know her name yet) in the pickup line and overheard the teacher say to your wife what a great day she’d had that day and has every day.

I was overcome with emotion hearing that; it was so overwhelming for me. And then later there was a picture of Joy and my daughter on the class app. I asked my daughter about her, and she told me her name was Joy, and I immediately started crying. I was not yet at the point where I felt joy, and I found it incredible that you guys named her Joy.

I resolved at that moment that my daughter’s middle name would be Joy and that I would manifest a feeling of Joy in my heart for my soon-to-be baby even though that’s not what I was feeling at that moment. I was so scared of the unknown.

Fast-forward to today, and our little L___ Joy (now 20 months) is the joy of everyone she meets and the little joy of our family!! It’s hard to think back to those early days after the diagnosis. I think about my fear and sadness with shame. But seeing your daughter Joy, without even meeting her, brought Joy to my heart and helped me through that time.

I ran into my daughter’s preschool teacher recently and through our conversation I ended up telling her the story and she shared your blog. I just spent the last hour reading it. It’s so lovely. I’m so moved by what I read that I thought I’d take a leap and send you this note. I loved reading the stories of Joy and I can’t wait for my little L___ Joy to experience all of the things I’m reading about.

Joy’s “Good Side”

Joy loves kindergarten. In the morning, as we get ready for the bus, making lunch and packing her backpack, Joy gets visibly excited. And during the week, we get many pictures from her teachers at school. Joy is clearly having a blast at school and learning so much. But she is super tired when she gets off the bus at 4:40. She often wants an afterschool snack and play time or a bike ride. And we do dinner early because by 7 pm, she is ready to go to bed.

Joy will come into the kitchen, where I’m often reading or working, turn off the kitchen and dining room lights, and then gesture to me (or Mom) with her hand. We don’t need words to understand her. She is ready.

I put down my book or close the laptop, make a cup of ice water, and follow Joy down the hall. Joy brushes her teeth (with some assistance) and we change into pajamas. She hops into bed, and I give her the water. She takes two or three sips and lies down, pulling the covers up to her chin. I dim the lights.

I lie down on Joy’s left, letting Joy rest her head on my right arm. She puts her right hand in mine, and she rolls her head back and forth until she’s comfortable. She turns to me and gets as close as possible, snuggling and putting her leg on my leg. She believes that this snuggle hold is rock solid, that there is no way I can escape. And of course I don’t want to escape. I live for this.

When she is held, Joy often falls asleep within minutes. And the smell of her hair can make me sleepy as well. I might nap for thirty minutes or so like this. Then, if I’m careful and gentle, I can extract myself from her embrace. If she starts to wake up and I’m not in the snuggle position, she will whine for a few seconds until I resume the snuggle hold. Soon, though, she is back in deep sleep.

So Joy almost always places her head on my right arm. But yesterday, she lay down in my spot. So I climbed over her and placed her head on my left arm. And I looked at her as she snuggled into me. And I noticed how really beautiful her eyelashes are. And those cheeks. And so I wondered if this change in perspective had something to do with me rediscovering Joy’s beautiful features.

It was odd. I mean, Joy’s face is symmetrical. Her eyelashes are mostly identical on each side. Cheeks too. Her smile is joyous and wonderful from every angle. Her hair is soft and shiny. (However, there is some research that demonstrates that the left side of the face shows more emotional expression. The left side is often considered our “good side.”)

So I’ve decided to look at her from different angles. Every day. I want to commit to memory as much as I can about what Joy is like at age five. And six. And seven. And since my memory is getting slippery, I want to take more photos and videos.

And someone needs to take pictures of her mom and me. Because someday, she might ask, “Who loved me the most in the world?”

WELCOME CLASS OF 2037

Joy got a taste of kindergarten last week. The Summer Success program gives kindergartners a chance to check out the grade school, become familiar with riding the bus, learn the location and layout of their classroom, follow school rules and itinerary, etc. It gives the teachers an opportunity to meet the new students.

We think Joy enjoyed it. She did not get off the bus crying. She seemed okay. Maybe a little tired.

On Thursday, the last day of Summer Success, an orientation session was held in the gym for the parents. The principal and both assistant principals were there to do a slide presentation and answer questions. The first PowerPoint slide read: WELCOME CLASS OF 2037.

What!? 2037? Holy crap. I assume that for Joy’s graduation ceremony, someone will send a driverless electric van to pick me up from the assisted living facility. Unless graduations are virtual in 2037.

The orientation was similar to those I attended in the 1990s. However, this time there was more discussion of online forms, Google forms, QR codes, apps, parent portals, Infinite Campus, iPads, et cetera.

And of course, there was a police officer in flak jacket patrolling the gym.

Joy was excited every day last week. She stood at the front door each morning, hopping and clapping and eagerly waiting for the monstrously huge yellow school bus to arrive. Her backpack looked so big on her. But I know she will grow into it so fast. And she will grow into her identity as a student, a classmate, a girl, a friend, a sister. Maybe someday she will be an athlete, an artist, an employee, a wife. All I know is that since December 10, 2018, she has been the most loved baby girl in the world.

Deb and I are also excited. And we are also nervous, hopeful, worried, scared, and emotional. And even though I’m not quite ready for Joy to take this step into the world, I know that she is ready. And that’s what really matters.

Here Comes the Sun

On Monday, I walked out of the Middendorf-Kredell Library at 1:45 pm, leaving my laptop on a desk in the quiet room. The sky was clear, gorgeous. The sun was starting to dim, however. I’d spent two hours that morning trying to find a pair of eclipse glasses. It was futile. Apparently they had been sold out for days.

We wouldn’t have “totality” here in St. Charles County, but 99% of totality is not bad, I thought, and that would occur at 1:59. I thought I might be able to gaze up then. However, when a librarian noticed that I did not have eclipse glasses, she said, “You don’t have glasses! Wait here. We have a few pairs set aside at the information desk.”

She returned in thirty seconds and handed me the cardboard eyewear that would keep me from going blind. Now I was ready. In just a few minutes, the moon would cross the face of the sun, a rare phenomenon that has amazed humans since ancient times: a total solar eclipse. Over the course of several hours, tens of millions of people would fall beneath the moon’s shadow as it swept across the American continent at almost 1,500 miles per hour.

At 1:55 pm, I noticed that traffic on Highway K had diminished significantly. Highway K carries almost 40,000 cars a day. At 2 pm, cars and trucks should have been passing the library at one or two per second. There was nothing. It was quiet. Clearly, people were stopping what they were doing and looking up at the sky.

Meanwhile, at Joy’s school, teachers were showing a live broadcast of the event in all classrooms. School officials had no plans to let four- and five-year-olds go outside and look up at the actual sun (with or without proper eyewear). I was certain that Joy was bored out of her mind.

At 2 pm, two dozen librarians and library patrons stood on the sidewalk and gazed up at the sun. Next door, at Imo’s, employees were standing in the parking lot doing the same thing.

It’s difficult to describe what it’s like to watch the moon block the sun. As I looked up, a model of the sun, earth, and moon played in my imagination. And I felt something like wonder.

Later, I thought about how rarely I look up at the moon and the stars. Living in an urban area, it is certainly difficult to see stars at night. But the moon is visible almost every day. It really is an amazing planet we live on.

Have you ever seen the DreamWorks animation that plays before animated Universal movies? The version I’m thinking about shows the figure of a boy lazily fishing while sitting on the edge of a crescent moon. It reminds me that it’s easy for children to believe in magical things, such as that the white, glowing crescent in the sky is a great place to sit and fish. Only later do we understand: “Hey, the rest of the moon is still there. And it’s massive. The black part is just shadow.” In school we learn much about the moon. How far away it is. Its history. How difficult it is to get there and get back. And although we never fully grasp the scale of the solar system and the universe, we know that the universe is wondrous, mysterious, and amazing, and more so the more we learn about it.

Joy is our sunshine. She is the sun in our family solar system. And if I’m the moon, then I guess I orbit the thing that orbits Joy. Yes, my presence waxes and wanes. I’m at home, then I’m away. I’m in my office working, then in the yard running after Joy. I give Joy a bath in the morning, then head to the store and the library. I tuck her into bed, watch her fall asleep, then get up and get back to work. She may see just a sliver of me today. But I’m still all here, just in shadow. In the evening, Joy, if you look up, you will see me. My love never wanes.

And once in a while the orbiting bodies in our system perfectly align, and for a moment a shadow is cast, and people look up and are amazed at the perfect shape of our world.

Bespectacled

I’m a good example of the Clark Kent effect. Wearing glasses makes me look meeker, nerdier, smarter, and more mild-mannered than I really am. In fact, I wear glasses because it’s just easier than popping in contact lenses. I cannot do contact lenses. I have some kind of cognitive deficit in which my brain says, Hey, get your finger out of my eye.

Joy was fitted for glasses a month ago. And they just arrived. I think Joy is about the cutest girl on planet Earth. But I think glasses make her look even cuter.

She refuses to wear them for more than two or three minutes. But we are working on it.

“Ice cream,” Joy often says after dinner.

“I’ll get you some if you put on your glasses….”