Posts filed under ‘Blessings’
I am amazed that I actually posted the whole month of October for Down syndrome awareness month. It has been a wonderful experience for me to go back to the time of Polly’s birth, to look at what I wrote then and fill in the blanks, to share with others. Thanks to those of you who read my words and commented here and there.
We’ve come a long way. I’m hardly ever sad that Polly has Down syndrome these days. It does happen sometimes, but the feelings are fleeting. I learn so much about life and myself and God from Polly.
And now I suppose we are ready for a new story.
Sergei and I have committed to pursue the adoption of a little girl from Eastern Europe who has Down syndrome.
I can’t really explain how we got here. We have talked about adoption and after my time of grieving Polly’s diagnosis our conversations about adoption included the words Down syndrome.
Then I saw this little one’s face and I knew that once again our lives were going to change. And although it will be a difficult and tedious process and at times I will wonder why in the world we would commit to something like this it all will pale in comparison to what God has for our family as we step out in faith.
This is Veronika and she is six months younger than Polly. God willing, if we get her we would like to change her name to Evangeline. We found her through an on-line ministry called Reece’s Rainbow.
Pocket Lint readers may have to make room in their lives for a little more lint, as do we.
This post is part of this weeks Hump Day Hmms. Click over to read more about what others are saying about comfort zones.
Last Thursday night I went to a Moms Night Out for my kids’ school. It took me an hour to figure out what to wear before I left. It was not going well. In a moment of pure insanity, I even tried on a pair of maternity jeans I had set out for a friend who is expecting. While admiring the boot cut fit, I schemed about a shirt that would actually cover the elastic band around my waist. Then I imagined bending over at the party and showing off my secret to neatly dressed, put together women and I peeled off the jeans and chucked them across the room.
Going to the party was definitely out of my comfort zone.
Which begs the question: where is my comfort zone?
And the answer: I have no idea. I have not been comfortable for years.
There have been many changes in my life in the last six years. Sometimes I liken myself to having gone through menopause several times.
First we moved to Kiev, Ukraine. Elaina was 2 1/2 and Zoya was 9 months old. For two years my husband helped out with a church plant in another part of town while buying groceries, paying bills and looking after his little foreign family. I studied the Russian language full time and learned to walk to the Metro station looking down at my feet. Things that came easy to me, American mannerisms like smiling at strangers, wearing your shoes in the house and Kraft Macaroni and Cheese were boxed up and left in my mom’s attic over the garage in Michigan.
Time went on. I tucked comfort around my children in our little seventies style apartment like a warm fleece blanket the only way I could think of. I mixed our new culture with the old, pouring the American Happy Birthday song in with the custom of not wrapping birthday gifts in Ukraine. We dressed the girls up in costumes for New Year’s Day and pretended it was Christmas. I found the only store in Kiev that sold Lasagna noodles.
Everything I did in Ukraine was uncomfortable, until one day it wasn’t, and I was able to conjugate the verb ‘to buy’ in Russian’s past, present and future tenses. After three years there I noticed friendly faces around me, offering to show me how to make a warm compress for my daughter’s cold instead of reaching for Tylenol. We were part of a church that was growing closer to one another and to God, and my oldest daughter was learning addition and subtraction in her Ukrainian preschool.
I almost felt comfortable. So we decided to try for our third child.
God blessed our efforts and along came Polly. She was born there in Ukraine, three weeks early, in a private hospital that looked a lot like our western hotels. After her birth I had to learn a new language. I had to find out how to speak special needs; words like Down syndrome, IEP, therapy, hypotonia.
We landed (twenty days overseas in the NICU, packing our lives up once again, saying goodbye to our church) in Michigan and attempted to find comfort in our new surroundings once again.
I thought that moving back to the States would be easy. I already spoke the language here. Only, my time overseas changed me. A large part of me identified with Ukraine. I was out of place in church. The music was loud. There were too many faces. Every thing was so big and people had a lot of stuff. I came home from Zoya’s preschool round-up drenched in sweat. I remember standing in the school supplies aisle at Walmart, overwhelmed by the variety of paper and pens and lunch boxes.
And then last summer, we moved again, from Michigan to Chicago, from rural to urban, from middle class to upper class, from being average church goers to my husband pastoring a church.
And once again I am out of my comfort zone.
So, you see, there really is no such thing as small talk in my life. Which is why I dreaded the Mom’s Night Out last week. My small talk either gets big quickly or it gets quiet. Simple questions like, “where did you live before you moved here?” or “what does your husband do for a living?” or the ever present, “tell me a little bit about your kids?” do not have simple small talk answers.
After I found an outfit that fit, the party last week wasn’t that bad. I made small talk. The questions came up and I answered shortly, “we lived in Ukraine,” “my husband is a minister,” “I have three girls; seven, six, and two.”
My life has changed so much and so quickly, at times it’s like watching a three ringed circus. I have the poles and the plates, I am just having a hard time getting them all to spin at once.
In the midst of all these changes, I am finding that comfort is not really the point.
I speak different languages; special needs, English, Russian, Christian, urban, rural. And every language molds me a bit more into who I am to become.
I guess I am learning to speak small talk here in Chicago as well and to be OK with it.
That, in and of itself, brings me a bit of comfort.
The names in the following post have been changed to protect those unknowingly written about on my blog. The people are real but their names are different.
You never know who you end up sitting next to, or what their story is.
I posted about Elaina signing up for gymnastics. I waited outside her class with a book on the first day. I wasn’t very interested in reading. The book wasn’t that good.
Another mother sat next to me. Her book looked better than mine. I asked her about it and we chatted a bit here and there. She laughed when I overheard someone mention that the gymnastics class was for experienced gymnasts. The look on my face communicated that my child was a beginner. Elaina would just have to pretend that she knew what she was doing.
I remember thinking this lady was nice.
The next week, a rainy Tuesday, S had a meeting. So off to class we all went; me, Elaina, Zoya and Polly. I had a headache. Polly was fussy. Zoya decided spur of the moment that she really wanted to take gymnastics instead of ballet so her nose was out of joint.
We shuffled up the cement stairs and into the building. Polly straddled my hip, coat unzipped and falling off; her hair was coming out of the ponytail on the top of her head. It hung in her face.
The class is just an hour, but I wasn’t about to hold Polly on my lap for the duration. We couldn’t play outside at the park because of the rain and the floor looked pretty dirty, well, dirty enough that even this seasoned mother of three wouldn’t put her youngest down to toddle around on her hands and knees. Plan B was to drop Lainie off and head home. Sergei would pick her up later.
The nice mom with the good book walked in a few minutes after us. Immediately, she noticed Polly.
“You’re the minister’s wife, right?”
I was surprised. Most people who know that S is a minister try to avoid the topic.
“Yes, how did you know?”
“I’m Sarah, Charlie’s mom.”
My mind jogged back to last summer. We were new to Chicago. One day S came home from the park with the girls. He told me that a lady came up to them. She wanted to meet Polly. As they talked, he found out that she, too, had a child with Down syndrome. But her son had serious health issues, and he passed away.
“She gave me her phone number and wants you to call her,” he said.
I was scared to call. While punching in her phone number on my cell, I took a deep breath. Waiting, I looked out the window. The view was still new to me. The Japanese maple tree planted in front of the porch was in full bloom.
I left my name and number after the beep.
A few days later, she called back.
It was getting dark outside. All the windows were open. People chatted as they passed our house on the way to a restaurant or a bar. S figured out how to get a few stations in on the TV with the rabbit ears and we were watching a rerun. I can’t remember what show it was. But I do remember our house was barren. The living room held two chairs, empty bookcases, the old television. Boxes lined up against the wall.
We talked about Polly for a little while. I briefly covered our history, …lived in Ukraine for a few years as missionaries…had Polly there…she was very sick at first, in the NICU for twenty days…on the sixth day a blood test confirmed the Down syndrome…six weeks later we were on a plane, headed back to the States, primarily to care for Polly, holistically, because we all needed the care. We talked about Early Intervention in this area and about therapists who were good. I wrote down her recommendations.
Then I asked her about her son.
And she began to cry.
“He had a lot of things going on. His little heart just couldn’t take it all. When we found out he had Down syndrome, I told my husband we could handle this. I knew that we would have struggles, but I didn’t think Down syndrome was that big of a deal. But his health issues were something different, entirely.”
After Charlie died, Sarah started a preschool named “Charlie’s Place.” The goal of the preschool is to provide a safe, learning environment for all children. Sarah’s dream is to see the preschool integrated with typical kids and kids with special needs, so that they can learn from one another.
That evening, sitting in the dinning room, in the dark, I said something to this mother that still haunts me sometimes.
“It’s taken me a while to grieve Polly’s diagnosis.”
I did not decide to grieve. When Polly came along it’s not like there was a drum roll somewhere off in the distance. I did not say, “And now, officially, I will fall apart.” It happened gradually. It was like a small cloud, quietly, most assuredly taking the place of th sun, until you are left in a shadow.
I felt my heart sort of tip a bit after the words were out of my mouth. I gasped. I was ashamed. This woman was actually grieving her child. She couldn’t hug him anymore, or kiss the insides of his elbows, or watch him smile and hear his laughter as he swings back and forth at the playground.
These are the things I’ve been thinking about this week: Writing about Emma and then, Ella, running into a mother who is bravely living life despite her great loss. Walking around the neighborhood, pushing Polly in her pink polka-dot stroller, Lainie and Zo leading the way with their brightly colored helmets, peddling as far away from me as they dare. Indubitably stopping at a street corner.
I can’t help but pay attention to the blessing of health. And at least, for today, not take it for granted. I’ll clap for Polly in therapy every time she puts another block in the bucket. I’ll act silly, smile and dance around when she cruises up and down the couch. I will let Zoya read me “Not Dots” for the fiftieth time, simply because she is reading. I will not turn a deaf ear to Elaina as she talks to me again about friend troubles at school.
Polly’s face lights up when her favorite therapist walks through the door. The one who lets her pick what to do next, who applauds after an impromptu song, who lets Polly pick the same book every week, because she knows it’s her favorite. They like to play with playdoh together. “Rolling, rolling, rolling, rolling, roll it out, roll it out.”
This is one of the therapists Charlie’s Mom recommended.
Tomorrow Zoya will turn six years old. Her friend from Michigan is coming to spend the night with us in honor of the special occasion. I bought presents, and cupcakes, white and chocolate with colored sprinkles on top.
In the evening I will blow up balloons. Elaina will help me hang decorations, the obligatory ‘Happy Birthday Sign’ that has travelled from home to home with us through the years. Every year it dutifully turns up at the right time and never hesitates to be tapped up against cold glass.
Some days I cannot believe that I am mothering three girls. Each girl is so different from the next. And therefore, albeit subconsciously, I mother them differently. They are growing up, in spite of me.
Zoya is quiet. She can be easily talked into a nap on any given Friday after a long school week. Sometimes if she gets really bored she decides to go to sleep. This last year she got glasses. The other day she said she forgets that she is even wearing them.
Now her ears are pierced. The offer has been on the table for a while, but just last week she decided it was time. I helped her up onto the high stool, she held tightly to a white stuffed bear wearing a red bow tie. She mentioned she was a little scared, we starting singing ‘Happy Birthday’ and by the time we got to the second syllable of birthday, it was all over.
She is tough, and private, and kind.
Zoya kept closer to me longer, but I don’t think it was because she needed to. She simply wanted to. Her six years has shown her different beds to sleep in, numerous plane rides, and foreign languages. When music plays her foot taps naturally to the rhythm. Her arms are graceful. She has her Papa’s eyes. Often, you will still find her curled up in my lap. No complaints here.
I’ve learned to slow down as her mother. We enjoy reading books together. She likes it when I tuck the blanket around her small body as I kiss her goodnight. Her best friend is a tattered cotton pillow…it’s difficult to make out the characters on the fabric after so many washes.
She’s made friends with a little guy in her blended Kindergarten class who has special needs. Today her news was that her teacher moved her to his table. They like to play tag together at recess.
When she decides to do something, it’s done. At two she was potty trained. All it took was an ‘I can pee’ doll and a few soft drinks. She never looked back.
Happy Birthday to my middle little one. It’s a privilege to be her mother.
The other morning I caught Polly trying to sabotage her stander. She kicked it, she pulled off the strap, she tried to push over the large wooden base.
For the past two weeks, she has stood for three hours, every day.
At first she was indifferent to it. I would tell her, “Polly, time to stand,” and hold out my left hand, palm down flat, as two fingers from my right hand made an upside down V on top of the surface. Polly would shrug her shoulders and we’d began the various steps required to get in the stander.
Now she is more combative about standing. She’s figured a few things out. Like how to hike her little rear up over the thick leather strap that circles her middle, creating a ledge to sit on or how to pull the Velcro strap apart one-handed, while holding on to the other side of the stander. She’s still standing, albeit begrudgingly.
Although she and I agree that the stander, for us, is not where it is at, the strength she is acquiring is undeniable. Polly pulls up to stand all the time now. She is an equal opportunity stander, giving the higher, slippery surface of the leather couch a whirl, slipping and falling as a wooden chair proves to be unstable.
And she’s climbing the stairs. After a slippery wooden stair or two, she stops, looks around for help, and makes some noise until a strong hand appears. With support pressing against her back, she climbs her way to the top and giggles with delight over the sight of uncharted rooms, new toys to be examined, beds to pull up on.
She loves her sisters’ rooms. I see the twinkle in her eye when she pulls herself in, so much to see, so much to destroy.
Friedrich Nietzsche said, “What doesn’t kill us makes us stronger.”
There are many things, too numerous and embarrassing to list, that I sabotage in my life. I kick, I undo, I push. My daughter, who is almost two years old, teaches me.
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 make-up 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.