Happy World Joy Day

At 9:15 a.m. Tuesday morning, my iPhone was placed on my chest as I slept. A minute later a pair of jeans was tossed on my face.

I didn’t yet know it was 9:15. It felt like seven or seven thirty.

“Morning, Joy,” I mumbled. “Please, let Daddy sleep for five more minutes.” I put the phone on the nightstand and pushed the jeans off my face and onto the floor.

Joy picked up the jeans and dropped them on my face again. She put the phone on my neck. (Translation: Dad, put on your clothes, check email, and let’s get going on breakfast.)

“Okay, Joy. I’m up.” I sat up. I looked at my phone: 9:17.

Joy handed me a diaper and then she lay on the floor. I made the change.

“Let’s get some Cheerios,” I said. “I think we have chocolate milk today.”

Joy led me to the kitchen, where I put Cheerios in a bowl, chocolate milk in her cup, and water in the tea kettle.

Joy pointed to the fruit bowl on the counter.

“Hey, baby,” I said. “You want a banana?”

Joy smiled.

“Aw, Joy. The nanas are still green. We can probably eat them tomorrow.”

Joy started to cry.

Some things I can solve fairly quickly. I can make microwave popcorn in two minutes, eleven seconds. I can replace the batteries in a toy in about a minute. Diaper change: just over a minute. Warm bath: five minutes. And normally I can slice a banana in around thirty seconds. But today I was telling my little girl that Daddy couldn’t make sliced bananas until tomorrow (even though they’re right there on the counter).

So, I get the tears. Bananas are yummy. But they have to be just right. If I gave Joy a green banana, she would never eat them again.

I almost decided to make a trip to Schnucks to get bananas. (Our green ones were from Aldi.) But Joy had stopped crying and was playing with her Fisher-Price toys.

After breakfast, I gave Joy hugs and kisses. “Happy World Down Syndrome Day!” I said.

Joy said “love you” in the way that she does.

I could say that, at our house, every day is Down Syndrome Day. But it’s really not. In our house, every day is Joy Day. Joy lets us know what’s on the agenda. Today was: wake up Dad, diaper change, breakfast with Cheerios and milk, snacks (grapes and graham crackers), jumping, screen time (with dancing), playing with dolls, playing with Mary and Amanda, trip to Goodwill with Mom, visiting with aunts, stroller ride with Mom, drawing, nap with Mom, stacking blocks, and lots of love and hugs and kisses.

And tomorrow: BANANAS!

Daddy’s Home

Once again, Joy is in her footed pajamas at the front door, looking out the glass storm door, clapping and jumping. She has the biggest, most beautiful smile, and she’s laughing, so excited that Daddy is home. And of course, I am happy to be home.

I love this ritual. I love that Joy is so tickled at this event: Dad is home. All she wants at that moment is for me to step inside and pick her up, telling her that I missed her all day. That I love her to the moon and back.

“How was your day, baby?” I say as I lift her up and swing her around.

“Oooo-Ooooo!” says Joy.

“I love you too!” I say.

Mommy watches us and smiles.

Deb orchestrates this daily reunion. She tells Joy, “Daddy will be home soon.” Then, “Let’s go to the front door. I think Daddy is home. Oh my goodness. I hear Daddy’s truck.”

And Deb opens the door so that Joy and I can have this moment.

I hope Deb does this for years to come.

Happy Birthday, Joy!

When I was about eleven years old my mom gave me a pair of stilts for Xmas or birthday. It was fun at first.  I got the hang of it within minutes and soon could amaze my friends from the neighborhood, who always said, “Hey, let me try.”

The novelty wore off after a while. Stilts increased my stature by maybe ten or twelve inches. But by age twelve or thirteen I had moved on to other interests—a ten-speed bike, skateboards, bowling, baseball, and roller skating.

But for a while stilts made me feel on top of the world. I was as tall as an adult. Falling off my stilts happened from time to time. I skinned my knees and suffered bruises. But I survived.

Joy turned four today. No, I did not buy her stilts for birthday. But her stature has increased by at least three inches this year. And she seems to be on top of the world. She feels so grown up now that she’s going to “school” (Psst! It’s daycare). She likes using the tallest chairs at home. She stands on (and jumps off of) the couch and does acrobatics on our king size bed. She is proud of her ability to run and jump and throw. And dance.

Joy has a friend named Dylan. They like each other a lot. They play on the slide and jump on the mats and stack blocks. Dylan teaches Joy how to play with his dinosaurs. Joy follows Dylan around the house and is learning from him.

Dylan is six. A few days ago, when Joy was still three, Dylan said, “Some people don’t talk when they are three. But Joy will be four soon. And she will talk to me.”

That may be. But right now Joy is communicating with hoots and laughs, smiles, hugs and kisses, and long, confident pronouncements composed of syllables and words that only she understands completely. But I know she is telling us about her day and how grown up she feels and how much she loves us, her family.

Happy birthday, daughter. We love you to the moon and back.

Joy’s Art

Joy is now attending school—preschool. Four days a week at a wonderful Francis Howell program that meets children’s educational needs and is developmentally appropriate for all children, including Joy.

She comes home at noon and she just goes on and on about it. I’m not sure what she’s saying, but clearly she loves the three hours she spends doing things with her teachers and other kids her age.

Joy loves to draw. I took joy to Cracker Barrel the other day. After we got her finger unstuck from a hole in the table, Joy drew with crayons on the kids’ menu. She laughed when she finished her drawing. We then had pancakes and eggs and bacon. It was awesome. I assumed that all restaurants had gone downhill since the pandemic. I stand corrected.

But Joy really loves to draw on the walls of the new house. As you may know, we (mostly Peggy) painted about a month ago. The kitchen is now light yellow (Toasted Yellow). The living room is green (Greywood). Other rooms were painted in other earth tones, as well as white, cream, blue.

We have tried to keep pencils and pens out of Joy’s reach because she absolutely will fill up blank spaces with her art.

A few days ago, I walked in the living room and found Joy with a pencil. She was drawing on the living room wall. (I had done an editing test that day and left the pencil on the kitchen table.)

I said, “Oops. No, Joy! Let Daddy have the pencil.” She handed it to me. She smiled. Then she looked down like she was sorry or guilty of a crime.

I started walking around the house to see how much mural she had done.

“Let’s see,” I said to myself. “Every wall in the kitchen.” I continued walking. Every wall in the living room. The foyer. The walls in Joy’s bedroom. Every square inch of every wall in the master bedroom. The hallway. The bathroom. The staircase. I frowned.

I opened the box of magic erasers that I got on Amazon. It’s a 100 pack. I started erasing the hallway art.

I wasn’t mad. But I was a little sad. Because clearly Joy did this project alone. She worked on her masterpiece for at least an hour while everyone else was busy doing other things—running errands, talking on the phone, working, texting, heading to practice at the gym. I wished I had come home a bit earlier and could have stopped myself from taking her pencil and had kneeled down and watched her technique.

I think I want to get some large poster board. I want to tack it up all over the house. And I want to watch my baby make her art.

Find Joy

Joy is on the move.

Joy has watched (and helped) Mom and Dad pack up and move from the house in Crestwood to a house in St. Charles and to another house in St. Charles. In just eight months.  

Joy looked on as Peggy painted the walls of the new house while Mom and Booshie unpacked and set up the new kitchen and Dad shampooed rugs. Joy unpacked her favorite toys as well as the bathroom essentials. Joy put three tubes of toothpaste in the tub, as well as socks, shoes, toys, toilet paper, and dry shampoo.  Joy found a red pencil in Dad’s new office and decorated the white walls in the finished basement.

Dad and Peggy built beds that arrived from Amazon and secured bookshelves to the walls. Joy climbed up into her kitchen stool and pointed at the refrigerator, demanding smoothies and juice and Cheerios and ice cream. Joy likes the smoothies to be made in the Ninja blender, which must be operated inside the kitchen cabinet (fewer decibels on her delicate ears).

Mom organized the closet in the master bedroom while Joy “organized” her room. Booshie organized the bathrooms. Dad moved boxes from the garage to the basement while Joy escaped from the new house to play in the street.

So I met some very nice neighbors (a man and a woman) on the day after move-in.

The doorbell chimed. Immediately, I thought, Where’s Joy? I ran to the door.

I opened the door. A lady was standing on my new porch. “Hi. I’m your neighbor Cheryl. Is that your daughter sitting on the curb across the street?” Joy was indeed sitting on the curb. She was wearing a diaper. But nothing else. “She wouldn’t let me pick her up.”

I could have said something like, “Yeah. I thought she wandered out front. I was just heading out to get her.” But I had no idea she was missing.

“Hi,” I said. “Nice to meet you. Yes. That is Joy. I appreciate you saving her life and ringing my doorbell. We moved in yesterday. Excuse me while I run over there and get her before she takes off. I need to get door knob safety covers. Clearly.”

The other neighbor was standing in the street. He said, “I knew she belonged here. I recognized the truck. Y’all lived on Brookneal a few days ago. Right?”

“Yes,” I said.

I have ordered an ID bracelet for Joy. It will read: “I’m Joy. If lost, please call Dad 314-555-9645.”

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?