It’s hard work

It’s hard work keeping up both this blog and Expecting Evangeline. 

In an effort to do better and yet still lacking creativity and drive, I decided on giving a kid update.

I’ll start from youngest to oldest:

Evangeline:  (Adoption) Things are moving along.  We have had two of four home study visits and this cold Chicago winter morning Serg and I stood in line at 8am to have our INS fingerprint appointment.  Several scribbled lists are scattered around our dinning room table, the words ‘THINGS TO DO’ written at the top of each page, all caps.  I’m not sure if that’s the best way to go about all of this.  I keep picking up different pieces of paper and stressing over them for a few minutes and setting them back down.

(Evie):  We hear that Evangeline is doing well.  Thankfully there is someone we know who has been able to meet Evie.  She reports that Evie is well cared for, happy, babbling and crawling! 

Polly:  We all know Polly’s big news.  She is a walking rock star!  She walks ALL THE TIME now and super fast!  She also has felt the need lately to say “Mom” a million times a day.  She follows me around calling my name all day long.  I love it!  She’s doing great in her preschool class and will be bumped up to the three year old class in January for a few months before she ages out of Early Intervention.  Polly’s into a lot of typical, two-year-old stuff, not sharing, making messes, playing with her sisters up in their rooms.

Zoya:  Zoya is zooming through first grade.  Her reading and writing are coming along but she really digs the science and math classes.  So NOT like her mom.  I get asked to volunteer some times and I get all sweaty and nervous lol!  Zo hangs out with a few choice individuals in her class whom she had to ask to be friends with before actually talking to them a lot.  She’s excited about wearing her school t-shirt Friday to show her school spirit, is waiting for her papa to give her more guitar lessons and does a great job dusting the living room.  Zo’s not entirely convinced that there’s no Santa, despite her oldest sisters insistence and her parents’ ambiguity.  She wrote him a quick letter, just in case.

Elaina:  Our oldest’s main goal in life is to make sure her family is as green as can be.  She walks around the house turning off lights and unplugging cords when not in use.  A lot of times she catches me trying to throw something away in the regular trash and I’m reminded to wash out plastic containers and milk jugs before putting them in the blue recycle can in the back of our house.  Recently Elaina decided that she wants to be an actress, but has to wait until she is eighteen because her dad told her that nothing good ever comes from child actors.  She’s getting straight As in school and is still very helpful at home, although we have been seeing a bit more ‘tude’ with her lately.  Ugh, she’s only eight!

Growing up

Our kids are growing up differently than expected.

In Ukraine I resigned myself to the fact that they loved to eat fish and at some point in life their Russian would be better than mine.  It became less important that their childhoods didn’t look like mine.  They thrived while living in Ukraine.

Then we had Polly and moved back to the States and now they are into High School Musical 3 and Dancing with the Stars.  They ask for frozen pizza for dinner.  I resign myself to the fact that their childhood doesn’t look like mine even in Chicago.

Last night Elaina found a photo album of our last six weeks in Ukraine before we moved back to the States.  We took turns staring at photos of family and friends.  We tenderly touched the pictures; faces, hair, hands.  And I started to resign myself to the fact that, for now, their childhood experience would not include Ukraine.

It made me sad.

But the girls are growing up, in spite of where we live.  Their experiences living different places; Michigan, Kiev, Chicago have only enhanced them as individuals.  They are little girls with big life experience.

Having a sister with Down syndrome has caused them to grow up as well.  They learned quickly that life doesn’ always go as planned.  They learned that people are different but just as important.  In fact, they are crazy about the idea of adding another member to our family who happens to have Down syndrome. 

They are growing up well, thanks be to God.  They are growing out in their understanding of faith and helping others.

That makes me happy.

Day Thirty

Having Polly home, dressing her up, giving sponge baths, willing her to eat her three ounces of formula before tiring; it all helped.  It made the connection real.  She was my daughter. 

The first day home from the hospital my mom, Sergei and I took turns feeding Polina.  She fed so slow that by the time she was finally done it was time to start again.  It was similar to nursing a baby; waiting for the milk to come in although my milk had dried up before I even got to hold her.

When it was bedtime Sergei pulled out our green sleeper couch and made it up.  My mother would have been no use to us without sleep so she stayed in our bedroom were she initially was installed. 

Polly was nestled in a carry size bassinet on top of the living room/dinning room table up against the wall.  She sleeped soundly while we watched reruns of Mad About You my mom brought from the States.  Sergei would laught so heartily, I remember it made me angry.  How could he laugh effortlessly, totally engrossed in a half-hour sitcom when our lives were changing as quickly as the wind.  I lie there in the night, exhausted, unable to sleep, listening for Polina’s breaths…and then it was morning and I frantically jumped up and checked the baby, realizing I had not fed her at all in the night.

My sleepy husband patted my shoulder, went to the kitchen for a bottle and handed it and the baby to me.  He had been up with her most of the night and did not want to wake me. 

Thus started our life after the birth of our daughter Polina.  The next few weeks found us packing up boxes of things to store at a friend’s house.  Our church in Michigan was preparing a place for us to stay.  Airline tickets were purchased.  We put a for sale sign on the car and met with the owner of the apartment to break our lease.  Sergei forfeited his position as pastor and friends and family came by throughout it all to hold the baby and spend time with us.

We left for America three weeks later.  I was sad to go but ready to touch down on American soil.  Our closest Ukrainian friends stayed at our apartment late into the night the day before we left.  They did not want to say goodbye and although we still had last minute packing to do, we sat with them and talked and prayed till the morning hours.

We left Ukraine unsure of the future; unsure of Polly’s needs or how to meet them, but a family of five nonetheless.

For the next year in Michigan my mood flipped and flopped from grief to thankfulness to joy to fear to grief again.  I remember when I first started talking to other parents of kids with Down syndrome.  One mother told me to let the baby change me.  And slowly, through Polly’s first year, she did. 

I grieved the loss of the child I expected, that’s true.  But I have been blessed with so much more than I could ever imagine. 

Tomorrow is the last day of Down syndrome Awareness month.  I wanted to end these posts with a nice bow but I didn’t get as far as I thought I would.

Check back tomorrow.  I have a new story to share.

Day Twenty-nine

This picture is the group of family and friends who came to the hospital the day Polina and I left the hospital.  She was three weeks old.  We were told that the hospital had a tradition of a champagne toast when a family leaves and in the same breath were also informed that they were not planning a reception for us because our daughter had Down syndrome.

Even in the midst of my inner struggle I was appalled at this kind of discrimination.  Sergei and I called everyone we knew.  People came with flowers and balloons, presents, smiles and happiness.  Americans, Ukrainians, young and old.  Someone said it was the largest group they’ve ever had for a goodbye.

We toasted Polly’s little life and Sergei prayed and thanked God for our new daughter and asked that she would fulfill the purpose he had for her.  I squeezed the baby close and tried to pray too with every fiber of my being.  The tears that fell from my eyes had a hint of joy.

After the hugs and well wishes we all piled in to the car to go home to our apartment; me, Polly, Sergei, my mom, Elaina and Zoya.

The city looked different to me.

Day Twenty-five

So I have missed two days out of the 31 for 21 challenge.  It makes me sad but what are you going to do with stomach flu?  And I just figured out that if I post at night it’s already the next day at WordPress.  Oh well.  Now I’ve confessed and I am moving forward.

I wanted to go back to the way things were.

In the apartment a picture of my oldest daughter sat on our coffee table, a gray cold stare, no smile, no semblance of America.  She was beautiful yet so different then how I was at that time in my life.  She was Ukrainian.  Old yellow photos of my childhood, year after year of a girl with brown hair and a wide, mischievous grin were stuffed away in my parent’s hutch.  I was American. 

I sat through a ‘welcome to school’ meeting for Elaina’s preschool in Ukrainian grasping at words that sounded like Russian, trying to act like I was taking notes like all the other dutiful, sullen mothers in the auditorium.  Zoya no longer complained about adorning tights and pants and a thick black snow suit just to step out the door for half of the year.  The girls were growing and thriving by eating fish and beets, salads and potatoes. I finally found a few clothing stores I liked for me and the kids.  I actually enjoyed going to my Russian class.

Almost every week someone new showed up at our house church on the second floor of an apartment complex in the Pechersk region of Kiev. I loved Sundays, people stuffed into our living room, the enclosed balcony opened up for one or two more to fit in.  There was singing and laughing and food and growth as I sat in the corner of our living room and tried to follow Sergei’s quick mouthed Russian sermons.   Mounds of open faced sandwiches were tirelessly prepared after church; mayonnaise and sausage, butter and fish on slices of thick bread with a twig of fresh parsley on top.  Toddlers who didn’t make it to the bathroom in time fumbled around the apartment in my kids’ pants. 

Often a child ‘borrowed’ a toy from my girls.  Sometimes it got back to us and sometimes it didn’t.  But we didn’t mind.  Now in the States, my girls try to ‘borrow’ toys once in a while from someone else.  They say, nonchalantly “I’m gonna borrow this toy.  We’ll bring it back next week” and our host family looks at me like I am purposefully trying to raise thieves. 

 

I wanted to go home but couldn’t quite make out what home I was thinking of.  I wanted to be in Pechersk with our kids, I wanted to be at church.  I wanted to be back home in Watervliet where people asked me about my life according to my mother’s newspaper column at the local grocery store.  I wanted to pack a few bags and board a large airplane and fly all day and all night to a place where I did not have this new curve in the road of my life.

I settled for leaving a few times in the next week, an hour or two tops, after we knew for sure that Polina had Down syndrome.  One day Sergei took me to a food court at a mall.  There I sat despondent and jealous that everyone else’s lives didn’t seem to be in crisis.

It was April in Kiev.  The days were on the verge of warming up.  Less rain.  More sunshine.  Birds were probably somewhere tuning, waiting for their cue to sing.

 

There was a tree outside my hospital window on the other side of the lawn near the street.  It was tall and as of yet, lifeless.  The branches on the bottom of the tree were wide and sturdy.  As my eyes moved upward I saw the twigs grow narrow and brittle.  At the very top of the barren tree sat a blackbird.  He was there every day, all day long.  He could fly, I saw him come and land sometimes first thing in the morning right before I got out of bed to go clean up to see Polina. 

I wondered what he could see from there that kept him from taking flight? 

It must have had something to do with perspective. 

Day Twenty-one

While we waited for Polly’s test results, friends and family came to visit.  Ukrainians brought food.  Americans brought cards.  My friend Raya brought ice cream and sat on the edge of my hospital bed while I fumbled for words Russian, nodding and agreeing.  Understanding without words. 

Visitors would tip toe into Polina’s sick room wearing blue paper robes, wash their hands in hot soapy water for a minute and walk slowly up to her incubator.  Some smiled when they saw her.  Some prayed.  Many asked questions and got very interested in the equipment.  Others were silent.

Then we’d walk back to my room and talk about the delivery, her condition, how I felt and how this whole situation was affecting them. 

I found myself wiping away tears, quoting Bible verses, comforting, trying to make some sense out of our circumstances for their sake.  It was easy to be more positive because we didn’t know for sure if our daughter had Down syndrome.  When I convinced someone else of God’s love and grace and help, it convinced me for a little while as well. 

It was hard too, because I tired quickly and sometimes I wanted to say, “look, at the end of today, you are going home to your usual life where nothing really has changed.  I will still be here quite possibly for the rest of my life and I can’t be bothered with supporting you.” 

Don’t we all go through life feeling entitled?  When things happen outside of one’s plan, others around that person think, “poor her, poor him.”  I am not a gambling gal, but I would put a hefty wager on a person’s second thought, “thank god it’s not me.”  I imagined people coming to my hospital room or calling, heartfelt sadness and fear in their voices.  I imagined their thoughts of sympathy for what they would assume was our misfortune, fervent prayers on our behalf and then I imagined them later on that day, plopping down in front of the television with a nice snack, laughing at a rerun of Everybody Loves Raymond. 

But they tried. 

Everyone had a story about kids with Down syndrome.  Many people told us those who lead normal lives.  Some kids go to college, live on their own, hold jobs, make their own lunches.  The first time I talked with my brother from California he reminded me of the show I loved in middle school that starred a guy with Down syndrome named Corky.  Another very good friend told Sergei and me about a girl he knew who is a real cool kid.  “She can talk and everything”, he said. 

I felt like people were saying albeit sub consciously “you have a kid with Ds, but we are painting a picture of her, making her as normal as possible.  “You are going to have the smartest, most well developed child with Down syndrome ever raised!” 

And I wanted to hear it.  It was helpful to hear about families who adjusted to this twist in life. To know that there are people who are happy and feel blessed with their children. 

Then well wishers hung up and went home and I sat in my tan hospital room across the hall from my little girl in her plastic house.

But I wasn’t alone.  Without invitation, even against my will, Jesus was in the hospital room with me, uninvited, quiet.  He did not demand or even expect my attention at a time when everyone else did.  He let me cry.  He stood close to me.  He held my hand, strong but smooth.  His grip was tight.  And I knew he was with Polly in her room too. 

During those times I felt strong, in spite of myself. 

I may have even thought once or twice that we were going to be OK regardless of the test results.

Day Five

I felt the baby move early in my pregnancy. 

One night in the bath I looked down at my cushiony middle and felt her flutter.  She probably wasn’t any bigger than my finger. The warm water swirled around me in my pink Ukrainian bathtub while bubbles of Dove bath soap popped and fizzled around me.  The tub was deep and wide.  Sounds and smells that were unfamiliar to me muted by the running water.  All I felt was warmth regardless of loneliness or homesickness or frustration over the difficulty of the Russian language.  I took a lot of baths and the baby was quite active and hearty for well into my second trimester.  

Then in my seventh month of pregnancy I noticed less movement.  She became sluggish.  I drank lots of orange juice and spent afternoons lying on my left side, counting kicks.  I almost always felt a soft kick to reassure me of her existence. 

Around that time my doctor told us the baby measured small.  She was three weeks behind my due date in her size and development.  I worried.  At times my anxiety was overwhelming.  I wasn’t able to do anything but lie on my bed and cry.

I went to the doctor and she assured me that I had nothing to worry about.  It was something trivial; either we miscalculated the due date or I just had a very petite girl in there.  She wasn’t worried the baby was small because there was consistent growth. 

My Ukrainian doctor was a jolly woman.  Jolliness is not a typical personality type in Ukraine.  She’d smile and laugh and ask us about our two other girls at home while stretching measuring tape around my abdomen.  Were they excited about the baby?  Do they like living in Ukraine?    

“Sergei, please tell her that we are concerned,” I’d cut in, giving my husband a list of questions and concerns at each visit.  I wanted to be sure there was nothing lost in the translation.  To calm me the doctor would order an ultrasound or a non-stress test and the tests would show that the baby hardly moved.  The doctor simply said “ona speet.”  “She’s sleeping,” and my heart beats slowed. 

I talked to my mom on the phone one day.  Her voice was distant.  It felt like the telephone line really did stretch all the way over the ocean.  I told her that something was wrong with the baby.  All I really wanted to do was get on a plane and fly back to the States but instead Sergei prayed and I worried and time passed.  Somehow I was able to convince myself I was overreacting. 

And I ate a lot of Big Macs.  Every Monday, our family day, we piled in to our white ford focus we bought finally after dragging our children around on sleds to the bus stop and metro trains for three years in Ukraine.  We drove to an indoor mall in Kiev that housed a huge, modern grocery store and a skating rink, outlined by a dozen or so fast food places and lots of flower shops.  Every Big Mac tasted like home.  My pregnancy weight packed on. 

We sat right up to the skating rink glass and laughed as beginner skaters flailed around on the slippery frozen surface.  Our kids were appeased with vanilla soft serve ice cream cones that dripped down their chins on to their shirts as they watched the ice.   

Sometimes Sergei took Elaina and Zoya skating.  And then I’d sit alone with my Big Mac and my third little daughter quiet and still inside me and giggle as they crept along the ice, the three of them joined together by locked hands, digging their blades sideways in the ice to move forward.  I’d laugh until tears streamed down my face.   

Day Three

A metal table housed a tiny television in the corner of the recover room.  The walls were bare and a very pale shade of blue, almost gray.  A nurse was quietly putting away supplies on the other side of the room.   She was blurry.   I blinked a few times before realizing a clouded partition stood between us. 

She noticed my arousal and came close to me.  “Kak vwee cebya choostvooyeteh?” she asked.  She was a petite woman, young, her plain brown hair was tightly pulled back in a pony tail.  Her demeanor was not friendly but more business-like.  I thought about the nurses I had the two other times I gave birth.  They were much more friendly and talkative, they smiled a lot and lingered. 

I said I was fine and asked about my daughter.  The nurse told me my husband had gone home for a few hours of sleep but will be back soon.  The baby was in the nursery on a different floor.  “You’re husband will explain everything to you when he gets here.  For now, you should sleep,” she said, already walking away from me mid-sentence. 

But I couldn’t sleep.  I was left alone in my own body for the first time in nine months.

For the next two hours I waited for my husband.  Periodically I tried to wiggle my toes.  I looked down at my stomach a lot shocked that the baby was no longer there.   I dozed a bit and prayed popcorn prayers in and out of sleep, “let the baby be OK, let the baby be OK.”      

My husband showed up around eight o’clock.  His chin was stubbly and he wore the same clothes from yesterday. 

I remember the first time I felt an attraction to him.  He was interpreting for one of my teammates leading a Bible study on the book of John.  Somehow by my junior year in college God had gotten my attention enough to tell me to go to Ukraine as a missionary for a year.  My apartment building was next door to where he lived at the time.  Our group was the second set of Americans he had worked with.  He interpreted, helped people buy groceries, paid their bills, walked them through the metro system.  Sometimes he’d stop by my apartment and ask to borrow some music from America. He was kind and serious, quiet yet outspoken when it counted.  He was the only Ukrainian working with our American organization who really did not care for America.  We became friends.  And that morning at the Bible study on the book of John I was convinced his clear blue eyes were focused on me. 

In the hospital room he bent down and kissed me like he kisses his mother.  Absolutely no pucker or pressure, just a slight brush of the lips.  “How are you feeling?” 

Again, I asked about the baby. 

“She’s on another floor in this hospital in an incubator,” he said.  “She was in a bad shape when they took her from you”.  Though raised speaking Russian, my husband speaks excellent English.  He only makes mistakes in English when he is tired or nervous. 

It was like my husband was telling me a story about someone else.  I didn’t remember anything about my daughter’s birth.

He continued, “She wasn’t breathing and was very little and all shriveled up.  They resuscitated her.  She has some kind of blood infection too.” 

I looked out the window.  It was raining outside.  I thought about people getting out of the shower, having coffee, leaving their apartments to go to work.  “The doctors said she wouldn’t have made it till morning.  She’s cute, but I have to tell you something….they suspect she has Down syndrome and at this point the doctors aren’t even sure if she will make it.  The head of pediatrics is coming to talk to us this morning at nine o’clock.” 

Sergei’s hand trembled as he handed my a few pages.  “When I got home this morning I went on-line and tried to find something about Down syndrome.  I didn’t have much time, but I did find a few things.”  One page read “Myths and Truths about Down syndrome.”  The other page was an article written by a woman whose granddaughter had Down syndrome.  With the arrival of our daughter, my parents now had eight grandchildren.  I thought about them half way around the world, seven hours behind us in time.  Both sleeping soundly in bed.  My father’s snoring filling the house.

The fact that my husband looked on-line for information about Down syndrome made my stomach flop. 

“Does she look like she has Down syndrome?” I asked. 

“She has a full head of hair, just like our other babies.”

I found myself trying to move my heavy, lifeless body over to the left side.  Suddenly, all I wanted to do was sleep.  I called out to the nurse and asked for another pillow.  It was painful to move.  My legs were numb and heavy.  I managed to get over to my left side with the pillow between my legs.  There, I had finally gotten in the correct position to sleep for a pregnant lady.  Only then I remembered  again that I wasn’t pregnant anymore.  My baby was somewhere in the hospital, alone and sick.  And she may have Down syndrome.

After a little while my husband left me to go check on our daughter.  And I burst into tears.  I cried loudly for a few minutes and then tried to gather myself.  The nurse watched me through the cloudy partition.

Day Two

The decision to have a third child was made hastily.  Somehow I felt ready.  We were settling in to life in Ukraine.  It had taken me two years of full-time language study to put myself out there and stumble around conversations with child-like Russian.  Learning Russian was like looking at a really blurry photo, straining to see, finding all the colors and lines but still not being able to make out what I was looking at.  And then one day the picture came into focus.  I wasn’t just listening to a bunch of sounds that didn’t make sense.  I was hearing words, then sentences, then full, albeit basic conversations that I understood.  I became an avid eaves-dropper. 

No longer did I crave obscene amounts of Coca-Cola because it reminded me of home or gulp down Tylenol every day because my head ached so badly from language classes.  My girls were dressed in thick tights and turtlenecks any day that was under seventy-five degrees like all the other children playing outside our apartment on the chipped, old playground.  They happily played at my feet in the evenings chirping away in Russian.  Words in their father’s tongue came as easily to them as breathing.  I was getting used to the idea that fish could be served at any meal; breakfast, lunch or dinner in one hundred and one different ways.  I hardly ever made eye contact with people in public anymore. 

The first year in Kiev was extremely lonely.  I was a young mom stuck at home with little kids (Elaina was two-and-a-half and Zoya was nine months old).  I couldn’t watch television or listen to the radio because I didn’t understand Russian.  We did not have internet access.  One cold winter night I remember sitting in our quiet apartment, kids tucked in and asleep, listening to the elevator go up and down or nine story apartment building.  “Maybe next time it will be Sergei”, I said out loud to myself.   

Finally, after two years, I had friends.  Not acquaintances but friends who actually liked me in spite of really knowing me.  Who knew it was possible to be friends with women on a deep level in a different language than my own?  Even though it was exhausting, life in Kiev was starting to seem a little magical.  Our family was settled.  I was happy.

Looking back it feels like I mentioned the idea of another baby to Sergei and did a quick nod to God regarding the topic and the next day there was a little white stick sitting on the bathroom sink with two pink lines.  I got pregnant the first month we tried for a baby. 

Shortly after I took a pregnancy test, my husband brought home another stack of books for me to read.  Once in a while he stumbled across a book vendor on the street that actually had books in English.  Usually they could be found at the outdoor markets along with any type of vegetable you can imagine and others you’ve never heard of. 

One book in the pile caught my eye.  It was a book by Bret Lott called Jewel. Jewel’s story took place in the backwoods of Mississippi in the 1940s.   Taken from true events, it is about a woman whose sixth child, Brenda Kay, was born with Down syndrome.  I read the book in one sitting, completely ignoring my husband and kids, my usual practice when I actually had a new book to read in English. 

While reading Jewel I thought about my baby, the size of a lima bean, growing inside me.  The day I finished the book, I was sitting on the bed in our room.  The sun setting, it was the kind of evening when life around you feels hazy. It was summer so the kids were already in bed even though it wasn’t dark yet.  The air was tinted green. “I just couldn’t do it”, I told Sergei.  “I could never be the mother of a child with special needs.”  And instantly I wished I could take those words back.  I felt threatened.  There was a little life in me, paddling around, growing fingers and toes.   God was knitting her together in my womb.  All I could think of was “what if there is something wrong with this baby?” 

My mother knits.  I still can see her sitting in a chair in my childhood home.  Already in pajamas, her hair wet from a bath although usually it was just after seven, a Coke sweating on the side table next to her on top of a napkin.  I see her hands moving, click, click, click, click.  Sometimes she’d unravel a sweater or a scarf that was nearly done.  I didn’t see the point after coming so far to start over because of a few little mistakes.  “Who wants to wear a sweater with mistakes?” she’d say.  Later on in her life, she’d ignore them more often.  I guess by then she wasn’t afraid of a couple mistakes. 

A lot people think something that isn’t what they consider perfect is a mistake.

 

Random observations that don’t mean anything, really

Yesterday was a crazy day. 

From the time I woke up until my head hit the pillow I was running around; a meeting at my house in the morning, Polly met her new developmental therapist at Noon, kids and homework in the afternoon, a mad dash to three different stores in the evening and then back home to make party favors for a baby shower we are having at church Sunday.

Those who know me well understand that all this activity is so not me.

At some point in the afternoon I watched Polly and Elaina roll around on the floor.  It hit me that Polly’s body, when stretched out, is long.  She is longer than half of Elaina’s body, more like 3/4.  For a second, both girls looked huge to me and I caught my breath.  Where has the time gone?  I looked behind me and in front of me but I just couldn’t find it.

Later I drove down Ashland at dusk and saw a group of six or seven-year-old boys kicking soccer balls around in a little green field.  Two or three men, assumingly dads, stood around, hands in pockets, sunglasses on.  Their voices rang out to the boys as cars and SUVs zoomed by.  People driving, no doubt, to something incredibly important.  Driving on in our busy, jam-packed days of life while boys in a soccer field learn how to kick a ball with the insides of their feet.