The best things are “almost free”

Joy is a rolling machine.  If she wants something—a toy, my iPhone, Mommy, a VHS cassette of Titanic—she simply rolls toward it. It is no longer safe to let her lie on the bed alone for more than 1.3 seconds. Two and a half rolls on the bed means she is no longer on the bed.  So we like playing on the floor now. Joy has several very beautiful blankets and quilts that are perfect for floor play, physical therapy, rest, and sleep.

Crawling is still a challenge for her. She seems to be able to scoot backward ok, but forward motion takes a while.  We procured two swings on Craigslist. One was ten dollars. The other was free. She can scoot out of both of them when she isn’t buckled in. But the swings are six inches off the carpet, and she extricates herself from the swing about an inch every three minutes.

We love Craigslist, Facebook Marketplace, and friends and neighbors who are getting rid of stuff that the baby (or we) might need. We love free and almost free. I’m sitting on a free chair at a free desk and typing on my nine-year-old HP laptop using Word 2010. I’m listening to Rachel Maddow through the free MSNBC app.

Right after Joy came home I blogged that she was a great deal—zero dollars down and $95.15 a month.  She continues to be a great deal—the best deal ever (although formula, diapers, and baby food add up to a bit more than $95.15 now).  She gives me more love and joy by 6:45 a.m. than I could have ever imagined.  I don’t want to be up at 6:45 a.m., but there’s no way I’m going to miss out on my mornings with Joy—the smile, the laughter and giggles, the “talking,” the arms around my neck. She loves to greet me and Deb in the morning. It’s like she hasn’t seen us in two weeks.

The best things in life are typically free—kisses, hugs, smiles.  But what about almost free?

Deb and I may like “almost free” a little too much.  We are spending too much time trying to get “almost free” furniture to upcycle. And we have dipped our collective toes (figuratively speaking) into the world of storage locker auctions.  Yes, we went in on an auction a few weeks ago. We were the highest bidder. So we had to arrange a truck and sort through what was essentially a lot of junk to get to the treasures.  And there were a couple cool items. But we are working on a better system—poring over the photos looking for clues to what has been left behind.

In the meantime, if you have and still use a VHS player, we have the ultimate collection of movies for you.  It’s free!

Come Walk in the Park, Sept 29

The last time I went to a baseball game was last September (9/22) on Walk in the Park Day at Busch.  Deb’s sister Peggy organized the event and made sure everyone in the family who wanted to go could attend.

This year we intend to have more participants and more fun. Last year, Joy was just 30 weeks’ gestation. This year, she will have a much better view of the game. She will be able to sit on laps, get passed around, and see what all the fuss is about.

Why do we walk? Join us and you’ll see!

“Walk in the Park is an annual DSAGSL tradition that brings together families from the St. Louis area and beyond for a day of raising awareness, cheering on the Cardinals, and an overall fun experience that fills the stadium with excitement. Join the nearly 2,500 friends and supporters of the DSA for our largest awareness day of the year. This year’s Walk in the Park game is on Sunday, September 29, 2019. The St. Louis Cardinals will take on the Chicago Cubs for the final game of the regular season.” –From the Down Syndrome Association of Greater St. Louis website

 11:00 AM  Pep Rally; 12:15 PM Gates Open; 12:30 PM Warning Track Parade; 1:30 PM Opening Ceremonies; 2:15 PM  Cardinals vs. Cubs (Final Game of the Season)  

Ticket packages are just $36 and include a commemorative t-shirt, wristband to walk the warning track before the game, entrance to the pre-game pep-rally, a ticket to the Cardinals game that day, AND the St. Louis Cardinals promotional giveaway for this game is one voucher per ticket good for a 2020 regular season game of your choice! This is the deal of the season!!

Guaranteed T-shirt Deadline is September 6. Children 3 and under do not need a ticket if they are sitting on the lap of an adult. Find all the stadium policies about bringing in food, what bags are allowed, alcoholic beverages, smoking, and strollers on the Busch Stadium information website.

The Joy Show

Deb and the girls want to see The Peanut Butter Falcon, a movie about a guy named Zac, a man with Down syndrome who has been placed in a nursing home because he has no family. Deb thought about taking the girls to see it this weekend, but she has put it off until sometime next week.

Anyway, apparently Zac is a wrestling fan and all day, every day, he watches a video tape put out by a wrestler named Salt Water Redneck. Zac wants to get to Salt Water Redneck’s wrestling school, the one advertised in the video. And so Zac tries to escape all the time. Zac rooms with Carl (Bruce Dern), who complains about having to watch the same wrestling video all day but helps Zac escape. Zac escapes in his underpants and meets up with Tyler, a crab fisherman. At the same time, Eleanor (a kind, pretty woman from the nursing home) searches for Zac before her supervisor orders Zac to be put into a state hospital. Tyler and Zac bond. They set off on foot. Then they build a raft and float down the coastline, like Huck and Jim floating down the Mississippi River. Et cetera.

This feel-good movie is getting good reviews. The actor with Down syndrome (Zack Gottsagen) apparently does a fantastic job.

Characters with disabilities are often portrayed by actors without disabilities. I remember watching LA Law in the 1980s. Benny Stulwicz, the mentally challenged office boy on the show, was played by Larry Drake, a man without cognitive deficits. Drake’s portrayal was so spot-on, he won Emmy awards.

And so it is cool that a man with Down syndrome is the main character in a hit movie.

I haven’t seen the movie, but I’m not sure I want to.

Let’s think about this. I could watch Zac, a thirty-eight-year-old man in underpants run away to become a wrestler, or I could stay home and watch Joy, an eight-month-old baby girl in a diaper, laugh every time I make a funny face. (This summer has been so hot. Around the house, Joy almost never wears anything except her No. 2 diaper. Tomorrow she moves up to the No. 3 size.)

I like Bruce Dern (Nebraska was amazing). But I love rocking Joy to sleep. I love kissing her toes. I even love hearing her cry for me at 5 am. (What ever happened to 6:15, Joy!?) I turn on the hallway light, stumble over to her crib, smile at her, change her diaper, hold her, make a bottle, do a feeding, and then collapse back into bed, grateful that I had that time with her.

Joy learned to clap her hands yesterday. She can crawl about 6 inches now (a week ago it was 3 inches). Joy still says just two words (da-da-da-da and ah-goo), but she pretends to be a  monster (to make Mommy laugh) and gets super excited when I say, “Do you want a ba-ba?”

So I could put some Twizzlers in my pants and go to the movies, or I could stay home for the Joy Show. Not Joy Behar and Elizabeth Hasselbeck. Just Joy Elizabeth.

Stayin’ Alive

Joy is eight months old. She has started to crawl forward, just an inch or two, but she is learning. If she really wants to move, she rolls—back to tummy, then tummy to back, back to tummy, until she gets to her destination. So just in case her destination is the stairs, we have put in a baby gate.

She is communicating to us with her own system. She has her tired cry, her hungry cry, the “I am bored” cry, the “don’t you dare put me in the crib” cry, and the “I have dropped my baba and I want it now” cry.  She lifts her arms into the air to be held. She kisses Deb on the chin to say “I love you, Mommy!” She kicks Dad on the chin or pulls on his lip if she wants to play. She smiles and laughs. She growls her monster noises to make Mommy laugh (we think).

Remember the Numa Numa guy who danced in his chair and got 160 million views? That was in 2005, when I didn’t know what “going viral” meant. It turns out Joy, too, can dance without standing up. Joy dances while having tummy time on the bed. All she needs is an iPhone streaming Huey Lewis (“Heart and Soul”) or the Bee Gees. She’ll sway from side to side while Barry sings in his high falsetto:

Well, you can tell by the way I use my walk
I’m a woman’s man, no time to talk
Music loud and women warm
I’ve been kicked around since I was born
And now it’s all right, it’s okay
And you may look the other way
We can try to understand
The New York Times’ effect on man

When Joy was born, she had her beautiful crib, the mobile, a Mother Goose toy, her stuffed animals. I guess most of the toys were packed away. Well, there is not much packed away anymore. There is now a baby swing for each level of the house. The Pack ’n Play is usually assembled when the girls are home. I stepped on a teething ring yesterday. And there were alphabet baby blocks in my bed last night (“V” and “C”). And today I had to step over the upstairs swing and walk around the Baby Einstein bouncer to get to my “office.” Those of you who have been to my office understand why I put quotes around the word office. Joy’s white noise machine was on. I thought, Why can I hear the ocean? I didn’t know we had a white noise machine, but I like it.

Joy is (almost) always with us. I work at home. Deb is home almost every day. With few exceptions, Joy is just a few feet away from either me or Deb. We have had Ashley and Sarah babysit twice. Booshie has taken care of Joy for an afternoon. And Mimi watched her when I took Deb to the ER at Mercy one night around midnight (Joy was just 5 days old).

We hope that we can continue to keep Joy with us 24/7 for a long time to come. But we do recognize that babysitters are nice to have once in a while, and Mary and Andi have been such a big help with Joy. They know her tired cry and her hungry cry. They know she can roll and roll to get closer to the iPhone. But I doubt they have ever heard the “I am bored” cry. Joy loves spending time with her big sisters.

Joy’s dancing stance
Fresh from the bath
Joy asleep on Paige
The first floor swing

“Da-da-da-da-da-da”

Today, I am home with Joy. Mom is working. I’m not sure I can work on copyediting projects, but I am blogging today. Joy is on my lap.

As mentioned in last week’s post, Joy is enrolled in a WashU study called “A Longitudinal MRI Study Characterizing Very Early Brain Development in Infants with Down Syndrome.” Part of the study involves testing on the same day as the MRI. Researchers put Joy through a bunch of tests, including ability to roll over, tracking objects by sight, crawling, hand-eye coordination, grasping a toy and moving it to the opposite hand, holding head up while on tummy, et cetera.

One researcher asked me how many words Joy knows. “Typically, by age six months, a baby will know from two to four words,” she said.

“Hmm,” I said. “She gets excited when I say ‘ba-ba,’ and she smiles when I say ‘ma-ma.’ She can say ‘Ahhhhh!’ very loudly. She knows her name, I think. She can say the words ‘a-goo’ and ‘eh.’” (Joy also gets excited when I kiss her fingers and tickle her toes, but that was not the question.)

A few days ago, Joy picked up a new word, and it is my favorite. “Da-da-da-da-da,” she said quite clearly. She said it over and over, all day long. Every time she said it, I got up and went to her. So I got up a lot.

We are working on new words all the time, and she hears words from her sisters and aunts, Booshie,  everyone. Mom and Dad have words. We have the best words. She hears the words love you, Mary, Amanda (or Andi), Kat (or Kay-kay), Emiree, time to go to shreep, diapey, bay-bee dot com, poopie, poo-poo, po-po, poopie-dopoulos, Booshie, Dooshie, Aunt Ashrey, biiggg gorl, soooo biggg, beddy-bye, formura, oh-my-gooodness, the most beau-tee-ful one… You get the idea.

Joy wants a ba-ba now. Bye-bye.

A Million Times the Force of Gravity

What a crazy week. Yes, the St. Louis Blues won the Stanley Cup, and there is a huge parade downtown today. But more significant events occurred this week.

This morning we attended the funeral for Kathleen’s dear father. I have never heard a more moving eulogy. He is being laid to rest today, June 15, on his birthday, a day before Father’s Day.

Happy birthday, Mr. Durbin. Say hi to my dad for me. It’s his birthday, too. You are both in our thoughts.

I held Baby Joy during the service, kissing her, smelling her hair, and just looking at her.

Joy had an MRI on Thursday night. She is enrolled in a WashU study called “A Longitudinal MRI Study Characterizing Very Early Brain Development in Infants with Down Syndrome.”

We arrived at the Washington University School of Medicine East Building at 8:30 pm (bedtime). We changed into scrubs and placed our clothes and valuables into a locker. We were questioned about any metal that could be on or in our bodies—earrings, piercings, dental implants, pacemaker. They tested my eyeglasses for metal content. They asked us more than once if we had been around glitter over the past few days. We passed.

Once inside the MRI room, ear plugs were placed in Joy’s ears. We fed Joy a bottle and rocked her to sleep. Staff then entered the MRI room and placed noise-cancelling headphones on Joy and positioned her on the patient table. Padding was added around the headphones. Then an MRI head coil was placed over her head (it sort of looks like a Star Wars stormtrooper helmet). A device was taped to her foot to provide readings of oxygen saturation and heart rate.

The tech turned a knob and the patient table carried Joy into the guts of the huge machine. Staff then exited to the control room, where the MRI was booted. Deb and I put on our headphones, as well, because the MRI creates sounds that exceed 80 decibels. Soon, powerful magnets produced a magnetic field within the machine.

Over a period of almost two hours, Joy’s head and brain were imaged from many directions. Meanwhile Joy remained almost motionless for the entire procedure. Afterwards, the tech told me that staff were amazed that Joy had remained so still.

I asked about the magnetic field. “How powerful is the MRI’s field?”

The tech said, “We are told that the magnetic pull is around 28,000 times the pull of gravity. We have heard that things like floor polishing machines have been sucked into the guts of the machine from six feet away. Sometimes when I’m in the room when it is operating, I can feel a tug on the clasps of my bra.”

Hmmm. Interesting. So my baby was in the center of a machine that was creating a magnetic field 28,000 times the force of gravity. Impressive. But there was a baby in that machine that has a pull on me that is a million times the force of gravity.

LGB!

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.

The best supermarket ever.

A Special Mass, a Special Day

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.

Zero Dollars Down and $95.14 a Month

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

Happy (Belated) Birthday, Mary

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’ll love you for a thousand years, too.

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.