Joy can now roll over from her back to her tummy. The first time I saw Joy do it, I almost cried tears of joy. She loves being on her tummy and really wants to start crawling. I’m already looking at baby gates.

Yesterday, Kathleen posted to the group message thread (a group of nine, mostly Paytons) a photo of the Dierbergs main office. The green space that faces Hwy 40 has been brightly painted with the letters L G B !  For several moments, I wondered: Why did they leave off the T (and the Q). Was there not enough space on the lawn? Was it a simple typo? Is Dierbergs only gradually and incrementally supporting the LGBT community? Maybe next year Dierbergs will add the T. That would be nice.

And then it hit me: LGB–Let’s Go Blues! I get it. OK. There is no crisis. There will be no calls to boycott the best grocery store ever.

Joy, too, was born into a community that faces discrimination.  We intend to make sure she gets the same opportunities as everybody else (“life, liberty and the pursuit of happiness” and all that stuff). We want people to meet Joy and others in her community so that it becomes clear that all babies are gifts from God.

This year, LGB means Let’s Go Blues. But our message, I think, is “Let’s Give Birth” to all babies. The attempts by the governments of Iceland and Denmark to wipe out this “affliction” are misguided. I know, because I have Joy.

Baby Joy has attended Mass dozens of times, but yesterday, as she turned 5 months old, she attended a special Mass on the anniversary of her grandfather John’s passing. Deb’s family gathered for Mass at Ascension Catholic Church. Joy lay in my arms (as quiet as a sleeping mouse) as we celebrated Mass. We spent the rest of the day at Betsy’s home.

Peggy and Booshie and Mary began work on a book of Booshie’s recipes. There was wine and Coke and a feast of roast beef, Booshie Salad, mashed potatoes, corn, and bread. Joy was held, kissed, changed, fed, and rocked to sleep. Everyone held Joy in their arms, even Andrew.

The other day, Andi and Mary watched me in stunned silence while I ate an apple-size tomato like it was, well, an apple. Tomato juice dripped from my chin.

“What the…!  Mom, come here and see what Mike is doing!” said Andi and Mary.

Apparently their day-to-day experience did not prepare them to see such a sight: Me eating an entire tomato in less than 3 minutes. Tomatoes, in the girls’ experience, were supposed to be diced or sliced and either tossed into a salad or placed on top of a burger.  (But homegrown tomato is meant to be eaten whole, with a some salt.)

Similarly, having a baby around the house 24/7 is a new experience for the girls. When the girls are here, the baby is the focus of everything they do. The girls feed the baby, hold the baby, bathe the baby, and help with Joy’s OT. They watch movies with the baby, talk to the baby, sing to the baby, photograph the baby, kiss the baby, change the baby (clothes and diaper), and push the baby stroller around the mall.

Andi was holding Joy the other day, talking to her. She looked up and said, “Mom, I can’t believe we get to keep her, like, all the time!”

In a world where something as mundane as a brand-new car can easily cost $30,000.00, it does seem amazing that we were able to get a brand-new baby girl for zero dollars down and $95.14 a month (diapers and formula). It’s a fantastic deal.  And she still has that new-baby smell. The best scent in the world is right around her cheeks (or chin or ears or neck).

Mary’s Chapstick: $2.19

Andi’s Altoids: $1.79

Taking the family to Denny’s for breakfast: $21.54 (after my AARP discount)

Spending time with Joy: Priceless

Love, Joy

Happy birthday, Mary! Well, I realize your birthday was Saturday, when we went to Chevy’s (and you got the birthday sombrero) with Kat and Andi and Dad and Mom, then ice cream with Emily, and then there was Easter, when Dad’s car went clunk! (Thank goodness for GM’s five-year/100,000 mile warranty.) Crazy week!

The YouTube video of you singing and signing “A Thousand Years” has almost 100 views. Thank you for learning sign language for me.

I know that the first thing you do in the morning is come into my room and pick me up. I know that you kiss me more than anyone else because I have the Chapstick on my cheeks to prove it!

I hope you like all the shorts you got for your birthday. Now I know what shorts are! Duh! I should have figured it out on my own because they are literally very short. I wear shorts too, but Dad calls them diapies. I get a new one about every 45 minutes.

I love you so much, big sister. And I am so glad that your MAP testing is over. I hate using maps. I just use GPS and Google.

Have a great week, Sis.

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.