All you need is love, Getting over the shock of my daughter’s Down syndrome

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All you need is love, Getting over the shock of my daughter’s Down syndrome

After Polly’s birth, I was obsessed with her Down syndrome-ness.Thoughts about her life and how it would affect me consumed the minutes of her newborn days.

It was not time well spent.

I drove myself crazy early on, worrying about her health, about whether or not she would graduate from high school, about her looking like she had Down syndrome.

I walked around with one shoe in the air, waiting for it to drop.

I judged her cognition and social skills and speech and muscle tone; can she bring her hands together in mid-line? Does she make good eye contact? Is she babbling? Does she like tummy time?

I thought about people I know whose children are grown and out of the house.

“It’s so good to know that you actually lived through this business of raising kids” I used to say to empty-nesters. “You’re free,” I’d joke. And the other person would smile and nod with a glimmer in his or her eye.

These exchanges floated back into my head when I had Polly. And the words stung like a summer bee landing on my arm on a hot July day.

Really, it was no way to live. But how could I have known?

Grief does strange things to people. All my coping mechanisms were scaled away and I had to start over.

I had to get to know and become comfortable with my new persona: the mother of a child with special needs.

Although very wise people told me to just focus on my baby, to let the future take care of itself… no matter how much I processed, no matter how much I prayed, I couldn’t. I spent too much time worrying about the future.

It’s embarrassing to admit, but true.

I missed out on her first year.

And then one day Polly laughed and smiled and showed me that she thought I hung the moon.

And her thinking that I hung the moon, made me want to hang it.

And so I did. I started to sing songs to her, to tickle her under her ribs causing eruptions of belly laughter.  I started looking her in the eye, lost in what I saw there. I started bending my head down to rest it against hers. And I felt the love oozing out of both of us, mixing and becoming something magical.

Now I play with this love between us like it’s playdough. Some days I use it as a balm to cover my wounds. It helps me to heal.

Other days I throw it out like a boomerang and it encompasses others and then flings back to me, fuller and stronger than it was.

A person who had Down syndrome came into my life and became my child. I am sad to say that is how it happened. If I would wish for anything today, I’d wish that my revelation would have been the other way around.

I wish I would have woken up one morning to discover that my daughter, the one I fell in love with instantly had Down syndrome. But it didn’t work like that for me.

I paid attention to the diagnosis first which deterred me from falling in love with my baby for a while.

And the journey is the journey, whether we like it or not.

Now, most days I forget about the fact that I am parenting a child with Down syndrome.

Really, honestly, she is just my daughter, Polly, who loves music and peanut butter.

Our new favorite song is All You Need is Love by the Beatles.

I bellow out the chorus, “All you need is love,” and Polly giggles and chimes in with percussion, “bum bump bum bum bum bum.”

Truly.

Other blogs about Down syndrome worth checking out:

The Ordinary Life of an Extraordinary girl, Meet Alex

Life as I know it, It’s not just the words, it’s the attitudes

What a team, TGIF

(This post was originally in 2009 on a different blog when Polly was three).

Red Balloons, first blog post link-up!

 

(I was looking through my old blogs today and stumbled upon the very first entry I submitted to the blogosphere in 2007 … I can’t believe I have been blogging for five years!)

Balloon against sky

Red Balloons

My brother had a dual birthday party for his son and his wife a few weeks ago.  I heard all about it the other day on the phone with my mom.  The party took place outdoors, at a park, on a sunny California day.  There were drinks for the adults, a jumping house for the kids, fresh air for all.  And balloons.  My brother’s daughter is twenty-three months old.  She has beautiful blue eyes, chubby cherub legs, dimples.  She is very independent and sure footed, always has a smile for anyone who needs one, and the day of the birthday party she was fascinated with balloons.  She could not stop following the balloons.  Eventually my brother caught her for a moment and tied a balloon to her belt loop.  Then all day long he could spot her.  He would look up from his food or from his conversation and instantly he would see the big balloon bobbing above his diminutive daughter.  I imagine the balloon red, lazily moving from one place to another, through peoples’ conversations, a few swipes past the buffet tables, loitering on the sandy playground near the slide.  All day long he watched the balloon and he knew that his little one was safe.  Exploring her world, but safe.

Parents want children who are easy, like red balloons.  At birth, our children are so dependent on us, but as they take their first gulp of air, they usually are already starting their ascent.  And that is the goal we have for our kids; to grow, to evolve, to become who they will become while we, without too much sweat and tears, watch.

I have three daughters.  It was easy to see my two older girls lifting off effortlessly, each floating away in respective directions.  Elaina, my oldest, jumped from the womb full of air, and has fought for independence quickly in every stage of her development.  She is trying to figure out a way to turn her balloon into a rocket.  My middle daughter, Zoya, sometimes is uneasy about the air around her, she stays a bit closer, evolving quietly but surely until she is comfortable with her surroundings.

Then Polly was born.  We were told she had Down syndrome and I did not know if her body could even hold air.  I spent almost a year grieving popped balloons in my mind; her future, lost expectations, my future.  I was certain I would not see her float away, towards independence, towards her own life.  But I think I was wrong.  At twenty months, little by little, with a lot of hard work, Polly is lifting off.

The other day, she was looking at a book of snapshots with one of her therapists.  The first page is her house; the next page is Polly, then Mama, next Mama with Polly, then her Papa, and lastly a picture of all three sisters.  We take this little book out daily and slowly, we look at each picture and talk about who we see.  Up until then Polly had been mildly interested, pointing to pictures, helping turn the page.  And that day it clicked.  When she got to the picture of me, she said excitedly, mama, mama, mama, and vigorously pointed to the book, pivoted her little bottom around and pointed at me.  She had such a bright smile on her face.  The therapist and I both squealed and clapped and I am sure that my makeup was running down my face.  It was like a huge puff of air had been blown into me, unlike anything I had felt before.  And I thought about the red balloon bobbing above my own head.  Ready to lift off with Polly.

(When did you start blogging? Thought it would be fun if we all posted one of our first blog posts. Link up below and I’ll check out your post!)

Down syndrome, adoption, bonding, hot cement, and hearing each other’s voice

 

How is your bond with Evangeline?

“How is your emotional connection to Evie going?” Nicola asked last week after I opened the blog for questions.

Thank you for asking about our bond, Nicola. I am a writer, so of course, as I thought about how to answer your question, a story emerged. Enjoy!

***

This afternoon the kids and I went outside to play. Our new dog Scout got to come out and bask in the sunshine too once I figured out how to screw her leash anchor into a small patch of malleable earth next to our house (the rest of our ‘yard’ is cement. Long story, different post).

I sank into a saggy folding chair, flicked a pair of over-sized sunglasses on to my nose from the crown of my head, and breathed in the 80 degree air.

Scout panted at my feet, Zoya lost herself in some make-believe world with neighbors, Elaina stretched out next to me; her nose in a book, and Polly giggled as a friend imprinted her body onto the ground with a sturdy piece of purple chalk.

Evangeline paced happily in front of me, hands flapping, sounds erupting in  my world that equate joy and excitement. “Oooohhhhhh, ahhhhhhhhh, yeeeeehaaaaaw.” To others probably just unpleasant noises they’d want to tone down. If she were a radio, someone  would get up and turn the dial. To me, though, it is her.

It is my daughter’s beautiful voice.

Last summer an afternoon like this was impossible without another adult present. Those truly were the dog days of summer in the world of Marchenko. Polly nursed an affinity for the street. Elaina and Zoya struggled with turn taking. Most of their games ended in tears. And Evangeline foraged the pavement for rocks and leaves and pieces of wood to eat.

“Evie, no!” my voice commands my daughter’s attention today. A chubby fist, still so baby after five years, already in motion to bring a small stick to her mouth to eat, pauses.

Her bent body straightens. She looks for me. Our eyes lock.

“No eat!”

I am all business.

She pauses, turns her chin towards her hand, and releases her grasp.

“Good job, sweetie! Way to go, Evie!”

If I ended this excerpt here, you would celebrate, right? This is a little girl that is non-verbal. So far she has no signs, she was abandoned at birth because of her diagnosis of Down syndrome, and it has taken an awful lot of work for both of us to bond.

Just wait until what comes next.

“I am so proud of you Evie! Come here,” I say. “Come here and give Mama a hug.”

I hold my arms out to Evie and will every cell in my face to attempt to communicate the hope in my heart.

The hope that my daughter will come to me when I ask her to. The hope that she will hear my voice and respond.

A slow smile unwinds across Evangeline’s face. Her feet rock back and forth and I stretch my arms through the tips of my fingers. If possible, my stretch would reach her and draw her to me where she belongs.

But then some of the magic, the hard work, the reckoning and redemption that have slowly taken place in the last three years since this child has joined our family would be lost.

This magic, here, now.

She takes a step towards me.

I gulp.

“Come here, sweetie. Good job, baby girl. Good job.”

Giggles erupt and she is in my arms, hugging me, proud of herself that she heard me, understood, responded, and sought comfort.

I’m proud too. I had no idea that bonding would be so much work for both of us. I assumed I would sign a piece of paper and she would fall into my arms where she belongs.

That scenario, however, has not been anywhere close to the adoption Polaroid that has cloudily developed in our lives.

But today on hot cement, my daughter has walked into my embrace. It took us both a long time to get here.

And I hope I am not so naive to think that this is it, from here on out everything will be sunshine and outstretched arms.

All relationships take work.

Evie and I are just starting to hear each other’s voice. We have a lot more to say to each other.

But our bond is there. It’s strengthening.

And it feels good.

World Down Syndrome Day, why I believe most five-year-olds would welcome a child with a disability into their families as adults

Unless we as parents and adults screw it up.

Have you heard the saying everything I needed to know I learned in kindergarten?

I think kindergartners this year, right now, in 2012, know more than most of us adults.

There are now simple blood tests developed that could possibly eliminate people who have one extra chromosome detected early in the pregnancy. Last week the disability community was in an uproar over a news story about a family who sued their hospital for not prenatally diagnosing their now four year old daughter with Down syndrome, claiming if they had known they would have aborted. The couple won, and received almost 3 million dollars.

If you spend any time watching or reading the news, it would not be a stretch to conclude that there is a part of our population; people who walk back and forth to the bus stop for work everyday, people who buy groceries at Whole Foods, who check the latest sports scores on their phones, and take their kids to the park to swing, who want to decide what kids they should parent. There are, sadly, people who do not value a life, if the life includes Down syndrome.

But thankfully, contrary to my upbringing, arguably due to mere time and place in history, typically-developing kids now days learn early on about individuals with special needs. They know the word “retard,” still used in excess in our culture, is not to be shrugged off as lazy, habitual slang, but rather avoided because it is highly offensive and hurtful. At the age of five, most kindergartners realize that differences in people make the world more interesting.

I, unfortunately, was forced to learn these lessons definitively later in life after the birth of my child with Down syndrome.

“How many of you came to school this morning wearing shoes?” I ask my daughter Polly’s class of 30 kindergartners, and watch 30 hands shoot up into the air.

“I am wearing shoes!” “I have on tennis shoes.” “I’m wearing brown boots.” “I’m wearing black shoes.” The children are thrilled with my question and puffed up in their answers. I am careful to ask Polly, who is sitting nicely on her carpet square, about her shoes, too. “My shoes are black and pink, Mom,” she declares loud enough for her classmates to hear.

After I’ve gotten the kids’ attention with an exciting topic like shoes, I transition to the book I came to read called My Friend Isabelle, by Eliza Woloson, a fun story about a friendship between a boy named Charlie and a girl named Isabelle. Throughout their play-date, Charlie talks about how he and Isabelle are alike and different. “I run fast. Isabelle takes her time. We drink apple juice and eat Cheerios at the little red table and chairs.”

Isabelle and Polly have something in common. They both have Down syndrome.

When a person playfully punches a friend in the shoulder and says, “You are such a retard,” he is referring to people like Isabelle and Polly, and 400,000 other individuals living with Down syndrome in the United States today.

According to the National Down Syndrome Society (www.ndss.org), Down syndrome is the most common chromosomal anomaly. It occurs when some or all of a person’s cells have an extra full or partial copy of chromosome 21. One in every 691 babies in the United States is born with Down syndrome.

Wednesday, March 21st is World Down Syndrome Day. The movement, existing now for seven years, has a mission to create a single global voice advocating for the rights, inclusion, and well being of people with Down syndrome all over the world (www.worlddownsyndromeday.org). Participating countries include the United States, Canada, Brazil, Columbia, Austria, Finland, France, Ireland, Turkey, and many more.

In thinking about ways that I, a busy wife, mother, and writer, could help raise awareness about World Down Syndrome Day, my mind immediately went to Polly’s kindergarten class. Perhaps more adults will grasp concepts like inclusion, respect, and omitting derogatory terms like “retard” if they follow the lead of their children?

After reading the book and talking about shoes, I attempt to provide a kindergarten appropriate definition of Down syndrome adapted from the book We’ll Paint The Octopus Red by Stephanie Stuve-Bordeen. “Children with Down syndrome are born with one more chromosome than the rest of us. Chromosomes are like thin, little strings inside us that are kind of like directions for our bodies. These directions tell things about us, like how tall we will be, if we will be good at tennis, or how big our noses will grow. When a person has one more chromosome, the directions get a little confused. That’s why kids with Down syndrome may look a little different or have a harder time trying to learn.”

The children raise their hands, this time asking thoughtful, honest questions, and I am amazed by the ease of our discussion. Together we note differences among us all. We nod in agreement that different doesn’t mean bad, and that being a good friend is always a good choice. These concepts are easily digested by this audience, like slurping up pineapple-strawberry juice through a thin straw.

There isn’t much time for my presentation, but I give each kid a chance to tell me about their shoes. “Mine are glittery.” “I have a basketball on mine.”  “One of my shoes has a hole in the bottom.” Without realizing it, this group of scraggly-haired, inquisitive, fidgety five-year-olds have surmised that they, like their shoes, are all alike and different at the same time.

I’ve been speaking to classes about kids with special needs for years, but this presentation is meaningful to me, because my daughter is the only child in her class, actually in the whole school, who has Down syndrome.

If Polly had been born in a different generation, she very well could have been sent off to an institution to live out her days secluded and dejected. If God had given her to a different family, maybe she wouldn’t even exist. Instead, she is an active, loving member of our family. She’s known in our community, church, and elementary school as the sweet kid who makes friends easily, loves elephants and Angelina Ballerina. By simply being themselves, she and her little sister Evangeline break stereotypes about Down syndrome that have plagued our culture for years.

By now, more than half way through their kindergarten year, the class knows Polly well. She could arguably be called many things, stubborn, cute, compassionate, fussy, fun, silly, and picky and I would agree. “Yep, you know Polly.” But there is a word these children will not use to describe my happy, thoughtful, and full of life daughter that probably would have been used more readily in years past: retarded.

And for that reason alone, I will continue to educate those around me.

And for that reason alone, I will be grateful.

Do me a favor for Polly, and for kids like her all over the word. Learn from your children. Stop using the r- word. Replace it with the word respect.

World Down Syndrome Day challenge: Share this post, or my video, or the National Down Syndrome Society website, or the World Down Syndrome Day website. Share something positive about Down syndrome. Please, share the love.