Apparently, after you watch a YouTube video, YouTube automatically plays another, related video based on your computer’s viewing history. So a few days ago I was watching Lauren Daigle’s “You Say.”

I keep fighting voices in my mind that say I’m not enough
Every single lie that tells me I will never measure up
Am I more than just the sum of every high and every low?
Remind me once again just who I am, because I need to know (ooh oh)

When it ended, MercyMe’s “I Can Only Imagine” queued up. For a moment I wondered why YouTube would play this particular song, as I don’t recall ever watching the music video. Both songs are hugely popular crossover Christian hits, so maybe that’s the connection.

“I Can Only Imagine” is a song by the band MercyMe. Written by Bart Millard, “Imagine” was inspired by the death of Millard’s abusive father. It considers what it might be like in Heaven, standing before God. The song has gone double platinum and has sold more digital copies than any other song.

People who have lost a loved one seem to be comforted by the lyrics, shedding “happy tears” while imagining being reunited with a parent, spouse, or even a child. And I get that. What I wouldn’t give to talk to my mom and dad. “Hey, Mom! Dad! I have a new baby girl. Her name is Joyce!”

However, the song has a different meaning for me. First, to be honest, I often take pop songs and change the words ala Weird Al. It’s fun.

For example, the words of one verse of “Imagine” are as follows:

Surrounded by Your glory
What will my heart feel
Will I dance for you, Jesus
Or in awe of You be still

And so when Joy came out of her bath with lint between her toes, I sang the following for Joy:

Surrounded by bath water
Why are my toes not so clean?
Are you not scrubbing piggies,
Or are ya’ll just mean?

But when I listen to the song when I am alone, I think about and imagine what it will be like to watch Joy grow up.

I can only imagine what it will be like
When I walk, by your side
I can only imagine what my eyes will see
When your face is before me
I can only imagine
I can only imagine

In that first verse, I see myself walking with Joy—to school, church, Starbucks, the library. And I can only imagine how wonderful that will be. I can’t wait to have a conversation with her.

But I worry, too. Will she be healthy and active and smart?

Surrounded by our love
What will your heart feel
Will you dance to music
Or will you be still
Will you stand for me, baby
Or to the ground will you fall
Will you sing hallelujah
Will you be able to speak at all
I can only imagine

I can only imagine

I can only imagine.

April is proving to be a busy time. This week will be super busy. We have to do our taxes and auto repairs, and we need to keep doctor appointments. We are working on upcycling some furniture we found on Facebook Marketplace. I have a project due at PRH on Thursday. I have a new client, who is sending me new assignments every other day, and a project on the back burner that has been simmering for 4 weeks.

But it is time for an update. Joy Elizabeth is still growing and showing more personality. She is often awake and alert. She laughs at Deb and smiles for Andi and Mary. Joy will coo and talk at Deb for 30 minutes. She loves bath time, car rides, and music.

Joy is 23 inches long and almost 10 pounds (we think). We will confirm this on Wednesday when she has her four-month doctor appointment (including vaccinations). We were finally able to get Joy on our healthcare.gov insurance. The Children’s Health Insurance Program (CHIP) in Missouri proved to be impossible to navigate. We gave up.

Joy is a happy baby. She has cried about four times total. It is so rare that when it does occur, I am up and heading to her in two seconds.

“What happened?” I ask.

“Don’t know. I think she hit herself in the face.”

Joy’s muscle tone is low, but improving. In fact, she seems so normal, so often, that I wonder if Down syndrome will slow her down at all. And I realize she is only four months old and that the gap between “normal development” and what Joy can do will become larger over time.

However, Joy is loved every second of every day. Joy brings joy to us and to every person who has met her. Joy has changed hearts and minds. I know.

Today is World Down Syndrome Day. It is celebrated on 3/21 because the date represents the three copies of the 21st chromosome (trisomy 21).

Many people in the Down syndrome community wear crazy, stripe-y socks today. The socks are a fun way to get people to talk about Down syndrome. Chromosomes (magnified about 10,000 times) sort of look like long, fuzzy, fleecy, mismatched socks. I wear mismatched sock quite often, so getting dressed today did not take any special planning for me.

How do we celebrate World Down Syndrome Day? It’s pretty much like most days.

I woke up at 8 am and changed Joy’s diaper while we both yawned. I talked to my three-month-old daughter, assuring her that she was very beautiful and that I would be making a fresh, warm bottle of formula in a few minutes. She gets four ounces in the morning. I made the bottle and began to feed her.

“Good morning, beautiful Joy. Who is the most beautiful baby in the Bi-State area? You are, of course. I love you sooooo much. And Happy World Down Syndrome Day! This is your day!” (Joy thinks every day is her day, but today is extra (chromosome) special!)

I kissed her cheeks, and her fingers, and her chin, and the top of her head. “Who is the yummiest baby in the world? You are! I could just eat you up. Is that okay? Is that wrong?” She just stared at me. So I kissed her toes.

I took Joy over to Deb, who was still in bed. “Look what I found,” I said to Deb. “A beautiful baby who wants to cuddle with her mom.”

When Joy sees Mom, she always smiles. And Mom always smiles at Joy. And today was no different. Someday, Joy will smile at her dad. I can’t wait.

Joy finished her bottle and insisted on having another. “Ah-goo!” she said. That means “two more ounces of Similac, please!”

So we had more to eat. We cuddled, talked, changed clothes, napped. I had coffee and Cap’n Crunch. Mom took pictures and uploaded them to Facebook. We changed diapers. We sat in the rocking chair, played on the floor. We smiled and laughed. We did some occupational therapy exercises. I edited a travel book with Joy on my knee.

And Deb told me to blog about how we celebrate World Down Syndrome Day. Well, we do World Down Syndrome Day every day. And we love it.

Joy Elizabeth turned 3 months old on March 10. She is growing and gaining weight. We have retired her 0 to 3 mo baby clothes. We will be donating these tiny items to anyone who needs or wants them. Meanwhile we have unpacked and washed the 3 mo to 6 mo clothes that were donated to us from our friends and relatives. We have so many cute outfits.

Joy has started smiling and (almost) laughing. If Deb looks into Joy’s eyes and makes bird calls or kissy faces, Joy will smile. If Deb smiles, Joy smiles. Joy smiles for the girls, too. However, I can whistle, squeak, grin, emulate bird calls, speak in baby-talk, kiss her cheeks and neck, simulate superhuman flight over the bed, and more. Do I get a smile? Usually not. Joy looks at me with an expression that seems to say, You’re okay. You pick me up whenever I say Waah. You change my diapers. You hold me a lot. We’re good. But Mom makes me ecstatic.

Joy likes everyone. She calmly and patiently gives everyone a chance. Anyone can hold Joy and get the same nonjudgmental affect and questioning expression. She seems to be saying, Okay. You picked me up. You talk. I can wait.

Joy’s big sister Kat (who is in town for spring break) came over to visit yesterday. Kat’s research article “Self-reflective mentoring: perspectives of peer mentors in an education doctoral program” had just been published in the latest issue of the International Journal of Mentoring and Coaching in Education, but Kat didn’t mention it. Kat was holding Joy, smiling at every syllable that Joy showered on her: “Ah-goo,” “Ooh-ooh,” “Eee-roo.” They took selfies together. Joy napped while Kat ate pizza. Then Kat fed Joy. It was amazing.

When Kat was around four years old, I sat on the carpet in her room and counted her books (Dr Suess, Goodnight Moon, Traveling to Tondo, etc.). I think she had around 900 books. I wish we had kept them, because I want to read stories to Joy.

Kat has always loved a good story. She was probably in 3 mo to 6 mo clothes when she first sat on my lap and listened to me read out loud: Horton Hears a Who. Over the years, I read it to Kat and Emily a hundred times.

As Kat sat with Joy on her lap, the story came back to me. I watched baby Joy, who has barely outgrown her 0 to 3 mo clothes, coo to big sister with the tiniest of voices: “Ah-goo.” 

And tonight, as Deb and Joy and Mary and Andi attend Seussical at Francis Howell High School, I will paraphrase Dr. Suess:

And that Ah-goo… That one small extra ah-goo put it over! Finally, at last! From that speck on that clover their voices were heard! They rang out clear and clean. And the elephant smiled. “Do you see what I mean?… They’ve proved they ARE persons, no matter how small.”

Yes, Joy, you will always be a person, no matter how small.

Love, Joy

Happy birthday, big sister. Today you hit double digits, the big one-zero. As you may know, I hit the big one-zero two weeks ago. Yep, I became ten weeks old just 13 days ago. I can now say “Ah-goo.” I’m working on saying “moo” so that I can talk about cows.

But Mom says you are ten YEARS old. How cool is that! Mom also says people used to call you Amanda before I was born. People used to call me Envelope, but no one knows why. Crazy!

I’ll never forget that day in the hospital when I tooted in my diaper for the first time. You were right there, holding me. I think I made you laugh. And Mary too. Mom says she has a picture of that moment. Cool! You always hold me so gently. I appreciate that!

I am hopeful that you will hold me today and I can toot you a happy birthday tune.

Mom and Dad and everyone in the family—everyone who knows you—loves you very much. You are a good dancer, a great sister, and I love when you do the TikTok videos that make me appear out of thin air. I’m like: How did she do that? Magic I guess!

Andi, you are so funny. I love when you do your British accent and tell me a Peppa story, like this one:

“Hello Suzie.”

“Hello Peppa. We can be friends again if you say sorry.”

“I’m sorry I said you cheated, even though you did CHEAT!”

That story always makes me smile. (I am working on laughing out loud. Stay tuned!)

Mom says she wants today to be your best birthday ever. Me too! I think we are going to Booshie’s house today. How fun is that. When I am there, I am always being held. Yay!

I have to sign off now. Dad says I have a poopy diaper. He calls it a “Poopy-dopoulos.” He says, “Hey, do you have a Poopy-dopoulos for lying to the FBI? Or is it just a Mana-fart? Hahaha!” Yeah, I don’t “get it” either.

Ah-goo and happy birthday, big sister. I love you!

Joy

Mary By Any Other Name

Deb’s full name is Mary Deborah McConnell. She goes by Deb because that’s what they do in my wife’s family. When a dozen women in a family are named Mary, it only makes sense to refer to each one by her middle name. I know Deb’s sisters by their middle names: Katie, Peggy, Ashley. I know my mother-in-law by her middle name, Betsy. And I know the aunts and female cousins by their middle names.

The only person in the family called Mary is Deb’s daughter, my stepdaughter Mary Richards. (In the interest of full disclosure, I also refer to my first wife as Mary Jo. When Deb and I were on our way to the courthouse on our wedding day, we ran into my ex-wife outside the front doors of the St. Louis County Courthouse. I said, “Hey, Mary Jo. This is Deb. Deb, this is Mary Jo. Hey, Mary Jo, Deb and I are getting married in—” I looked at my watch. “—twenty minutes. So we’ve gotta run. Good seeing you.”)

Deb’s daughter Mary loves spending time with Joy. Mary holds the baby at every opportunity. She plays music on her iPhone for Joy and sings along. She kisses Joy on her mostly bald head, leaving behind the soothing scent of cherry ChapStick.

Andi also loves holding Joy, but usually Mary is the first one tiptoeing into our room in the morning to kiss her, hold her, and change her diaper. Mary doesn’t go to bed without saying goodnight to Joy, kissing her on the head, and making sure Joy has a stuffed bear nearby.

Mary believes that finding the perfect bear for Joy is super important. Joy has received stuffed bears from friends and relatives. We have a bear from Katie and Dave that was made with love (and input from Mary and Andi) at Build-A-Bear. We have a gorgeous bear that Chip and Kathleen had made from a shirt that had belonged to Deb’s dad (Deb’s dad was lovingly known as Dedushka, and the stuffed bear is known as Dooshie Bear). Mary has assessed each bear for color, texture, huggability, et cetera. Mary knows about bears. Her favorite stuffed animal is Mr. Bear, and he is the standard against which all bears will be judged.

I guess you could call me a word guy. My wife, Deb, can confirm this. I like words; I like reading. I like listening to my selections from Audible.

From time to time, Deb helps me edit and proofread my book projects for various publishers.

As she is reading a chapter, she might say, “Is ‘coffee mug’ hyphenated?”

“No, I don’t think so. It’s an open compound. Check Merriam-Webster eleventh. If it’s not hyphenated in Merriam, it’s not hyphenated.” I use the term “Merriam-Webster eleventh” a lot, maybe every day.

A friend of Deb’s gave us a book—a memoir by a woman who gave birth to her second daughter in 2010. Author Kelle Hampton relates in the first chapter that as soon as she saw her baby’s face, she knew with certainty that her daughter had Down syndrome. Kelle had had no prenatal testing. She was thirty-one, an age when the chances of giving birth to a baby with Down syndrome is around 1 in 1,000.

But Kelle knew. And in her beautifully written memoir, Bloom: Finding Beauty in the Unexpected, readers feel her profound pain on the day of Nelle’s birth.

I’m still reading the book. It knocks me out every time I pick it up. Every sentence is beautifully written, and, like I said, I’m a word guy.

The book begins:

I turned thirty-one on December 29, 2009. My husband and I went to dinner with friends the evening before, and as we left, toting our leftovers in Styrofoam boxes and marveling at my very round pregnant belly that seemed to have grown a bit since dinner, I noticed the welcoming glow of the nearby bookstore…

Joy Elizabeth is eleven weeks old. These first eleven weeks have been wonderful. During the first ten weeks, she slowly gained weight and some length. Her 0-3 month clothes are getting a little snug on her tiny body. We have retired the outfit that we call Hello Kitty Clouds—a white sleeper that has cartoon clouds that kinda look like Hello Kitty. The outfit seems just a little too tight now.

At week eleven, though, something amazing happened.

During the first ten weeks, Joy’s vocal sounds consisted of breathing, crying (a rare occurrence that only happens when she is very hungry), and grunting (when she is filling up her diaper).

But on week eleven, Joy started cooing (I’m calling it talking).

Daughter Andi was holding Joy, their faces just a few inches apart, when Joy said, “Ah-goo, ah-goo.”

“Did you hear that, Deb? Joy is talking,” I said. “Words are coming from her tiny mouth. Oh my goodness.”

“Let me see,” said Deb, who came over to witness the event.

“Deb, Joy looked right into Andi’s eyes and said, ‘Ah-goo’!” I said.

We each took turns holding the baby that afternoon, trying to elicit more baby talk. Eventually, over a period of days, she repeated her assertion to anyone who would listen: “Ah-goooo!”

When Cathy, Joy’s OT from First Steps stopped by two days ago to assess Joy, she said, “So Mom and Dad, what is going on with Joy?”

I could have mentioned Joy’s weight gain or her ability to roll over and raise her head. I could have talked about her good appetite. I could have mentioned that Joy can bring her fist to her mouth and bring her hands together. But I didn’t.

“She says ‘Ah-goo’ now. All the time. I’m sure she will say it while you are here,” I said.

“Aww,” said Cathy. “I love that word.”

I knew it, I thought. It’s a word. It might not be in Merriam-Webster eleventh edition, but it’s a word. She just said so.

I no longer work for UPS. I worked at UPS for many years because the benefits were fantastic for part-time union workers—full medical insurance for me and my family, including dental, vision, mental health, as well as tuition assistance and a 401(k). I did my freelance editorial work during the day. I worked at UPS at night (around four hours a night), mostly sorting boxes (about one million boxes a year).

I worked at UPS until I no longer could. I now have a ten-week-old baby (Joy Elizabeth) who will need significant and costly medical interventions in the coming years, so we are working on getting health insurance through healthcare.gov (Obamacare). We are optimistic.

When I would set off for my job at UPS, I did not put on a brown UPS uniform. I worked in the hub, a vast, noisy, dirty, factory-like building, away from the public. I would put on my crappiest clothes—my work t-shirts and jeans were old and full of holes—and head to Earth City. By the end of my four-hour shift, I was dirty and sweaty. If my shift was 5 p.m. to 9 p.m., I might stop at the gas station and purchase a large can of Budweiser. I would put $2.24 on the glass counter, call out “Hi, Bashir! How are you?” and head to my car.

One night, I stood at the counter in my distressed shirt and jeans, with my can of Bud and a handful of change. I was quickly picking through the collection of quarters and dimes in my hand. I had set aside ten dimes and was picking through the rest of the change, looking for five quarters.

“Here you go, bud,” said a voice to my left. Two dollar bills were suddenly thrust into my field of view.

I looked up. A bearded man in a baseball cap was holding out money to me.

“What?” I said.

“Take it. I’ve been there, man. It’s ok.”

“Really, sir, it’s not necessary.”

“I insist. Just take it.”

I laughed. I look like a homeless person.

“Thank you,” I said to the man. I took the money.

This story sort of reminds me of a segment I saw on the CBS Evening News. A wealthy businessman in Pittsburgh goes around the city around Christmastime and hands out hundred-dollar bills (around $100,000 total). A camera crew followed him one day as he gave out the Benjamins to unsuspecting shoppers at Goodwill, Dollar General, et cetera.

“Here you go, hun. This is a hundred dollars from ‘Secret Santa,’” says the businessman.

The people take the cash and start crying.

“Sir, your generosity and compassion are so amazing,” says one lady.

Every person who appeared in that segment cried. Some people I know would say that those people were shedding happy tears.

I have never thought that happy tears are all that happy. I have never shed them. I suppose that others have experienced happy tears. But for me, tears always reveal secret sorrows, regrets, hurt, or grief.

I have cried. I cried when I learned of Joy’s diagnosis: the prenatal blood test that showed with almost 100 percent certainty that she would be born with trisomy 21 (Down syndrome). I grieved for the baby we had been expecting—a “typically developing child,” as they say at the doctor’s office.

I have also cried on really good days. The day Joy was born was such a day. Everyone seemed to be crying tears of joy, or happy tears.

I held Joy on her birthday. I whispered to her the lyrics from Stevie Wonder:

Isn’t she lovely 
Isn’t she wonderful 
Isn’t she precious 
Less than one minute old 
I never thought through love we’d be 
Making one as lovely as she 
But isn’t she lovely made from love 

I cried. I was so happy to have Joy in my life. It felt so wonderful to hold her. “I love you so much,” I said to her.

But my tears were not tears of happiness. In the midst of my joy, I cried tears of regret and profound grief. Some of that regret and pain are difficult to explain. I think tears often help us express emotions that our lips cannot.

I remember the joy in holding Joy and touching her tiny hands. I instantly remembered the time twenty-six years ago when I held my daughter Kat for the first time. I remembered the day twenty-three years ago when I held baby Emily. Both of my daughters are alive and well and are out changing the world. Daughter Kat is working on her PhD at Marquette. Daughter Emily is working and going to school.

But I cried, I think, because I miss those baby girls. I regret not being a better father. I’m sorry that I was often selfish and distracted. I want more memories of that time. I want better memories. I grieve for the memories I can no longer remember.

Joy is asleep in her crib ten feet away. I want her to wake up so that I can hold her. I want to hold her and shed happy tears, not the tears I’m shedding this morning.

A few weeks ago, my friend Jill gave me an end table that was otherwise headed for the Dumpster. It is composed of particle board covered with wood pattern veneer. I repaired the drawer tracks that had originally been installed with staples. I sanded the top, drawer fronts, and sides, applied primer, and painted it forest green (I had some leftover Japanese paint found in a Dumpster). I found some unmatched drawer knobs in the basement. I screwed them on.

It turned out ok, and I might put it in my Airbnb apartment. I sent a picture to my friend Jill. She texted: “I want it back.”

I texted: “$65. LOL.”

I enjoyed working on that end table for a few hours. I liked watching YouTube videos that explained how to paint wood veneer and particle board. I liked turning some junk into something that can now pass as a shabby chic end table.

It made me think we could turn some of our eclectic furniture into something more. Maybe we could restore the round table we inherited from Deb’s apartment: the table that was “restored” by a previous owner. It is a solid wood table that was updated by gluing wood pattern vinyl flooring to the top. We keep it covered with a table cloth.

When Deb came home from the hospital with Joy, I moved the table upstairs to our bedroom so we could eat meals at the bedside. Deb had developed a serious infection after her C-section. At first, she needed help walking to the bathroom. She eventually needed help sitting up, sitting down, getting in and out of bed. Her pain was so severe one night that we ended up in the emergency room at Mercy.  We dropped off Joy with Deb’s cousin at midnight. Mimi was up and down all night with Joy. She was wonderful.

The table is just large enough for two people. We ate our meals bedside. We had several meals from Time for Dinner, which were generously given to us by Deb’s Bunco group.

That table is back downstairs. I removed the sheet vinyl. I sanded off the adhesive and old stains. And I applied two coats of polyurethane. Five hundred Scrabble tiles arrived from Amazon yesterday. (Scrabble is a big deal in our family.) The plan is to cover the 24-inch round table top with Scrabble tiles—words, phrases, and names, each tile piece glued to the surface with a drop of super glue. I will then cover the table with a 24-inch round piece of glass.

Late last night, I picked three tiles for the first word. I said to Deb, “I’m going to test this super glue. I’m going to glue one word to the table and see how it looks.”

“You are going to glue J-O-Y to the table, aren’t you?”

“How did you know that?”

“I just did,” Deb said.

So this morning, JOY is permanently glued to the very center of that table. But today MARY will be added, as well as ANDI, KAT, EMILY, DEB. I might add some high-value words, like QUIXOTIC. But I know that most of the words will have special meaning to our family: LOVE, HOME, MR. BEAR, BOOSHIE, HALLMARK, PEGGY, ASHLEY, KATIE, CHIP, KATHLEEN, SARAH, DAVE, MIKE, ENVELOPE, and many others.

Yes, JOY is placed at the center of the table. Some days it feels like Joy Elizabeth is the center of the universe, the center of our lives. But really, the center is simply ‘joy.’

“Oh and by the way, my name is Deb and I’m 43.” This is how Deb ended her first email to me in 2017. Yes, we met online. And so I met Deb when she was 43. I was 55 at the time. Deb turned 44 a few weeks later. I turned 55 a week later.

We moved in together on April 1, 2018. We signed a lease on a little house on Big Bend in Crestwood. It’s close to Deb’s old apartment, which was close to her church. It’s centrally located, not far from the city. It’s less than 30 minutes away from Webster, from Chesterfield, from Maryland Heights, from Cottleville, from St. Charles—from the people and places that are important to us.

On April 12, Deb asked me to go out and get a pregnancy test. I said ok. I came back with one that costs a dollar.

A few minutes later, she came out of the bathroom, scratching her head. “According to the directions,” said Deb, “the plus sign means pregnant.”

“Here. Let me see,” I said. “Maybe you peed on it too long or something. I’ll go get another one at the store.”

Twenty minutes later, Deb opened the five-dollar Equate brand pregnancy test.

“Follow the instructions this time,” I said. “The chance of getting pregnant at age forty-four is one-point-six percent. We researched this, babe.”

Five minutes later, Deb said, “I think I’m pregnant.”

“I’ll be back in ten minutes,” I said. I went all out this time. I got Clear Blue Easy at Walmart. It’s the best. And it’s $12. If you are pregnant, it says PREGNANT on the tiny screen.

So we gleefully accepted the results of Clear Blue Easy. We started visiting the OB on a regular schedule.

We also accepted the risk of a genetic abnormality. At age 44, a woman has a 4% chance of giving birth to a baby with Down syndrome, whereas at age 30 it is 0.01%.

A few months later, a genetic blood test showed that the baby inside Deb had a 94.6% of having Down syndrome (trisomy 21). Along with Deb’s ultrasound findings, there was no doubt. The doc also mentioned (on accident and against our wishes) the sex of the baby.

Joy was born on December 10, 2018. She really did bring joy into our world that day.