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 Twenty-six

The news sank in and I scraped myself off the floor and tried to pay more attention to my daughter.  It was strange to be in the hospital still.  I was well enough to leave but allowed to stay there with her. 

I had no outlet.  I am a gatherer and I wasn’t able to look for any information about Down syndrome.  Our lives were on pause.  The hospital had nothing to offer.  I hear about women in the States who deliver babies with Ds.  Some say they had to actually call some organizations like NADS and ask them to please stop calling.

And Polly was gaining strength.  She was breathing more on her own, her blood platletts were better and after almost two weeks of life I was finally able to hold her.  She was long and thin like Elaina when she was born.  Crying before I took her she quieted down in my arms.  I was amazed that this little person made so much commotion. 

The nurses showed me how to give Polly a bath with cotton balls and oil, starting at her ears all the way down to the bottoms of her feet.  She didn’t like being naked and thrashed her head from side to side, her little cry attempting to fill the space around her.

A sweet American woman, a grandmother to two children in the States with Down syndrome came to visit me one day in the hospital, armed with stories and photos.  I looked in amazement at a family who seemed happy and content, even thankful for their family.  The mother of the children wrote me an email and as I read her words, one mother to another, about God’s view of perfection and what she has learned from her kids, I cried.  But the tears were a bit different then before.

I received other emails.  Sergei brought print outs with him when he visited.  So many people I didn’t even really know took time to write to our family. 

And everyone basically said the same thing.

“Everything will be alright.”

Day Eighteen

My freebie writing day but I still wanted to post so I was true for the whole31 for 21 thing.

Today at the park I was chatting with a mother.  We had a lot in common.  She had three daughters.  I have three daughters.  Her middle daughter wears dresses every day.  Zoya prefers tights and a skirt to pants any day.

And her sweet little two month old baby girl has Down syndrome.

Small world.

Day Twelve

I met my little girl the evening of her early morning birth. I was on the floor above her in a recovery room and numb from the waist down.  The smiling doctor did not want me to get out of bed but I was determined.  If I could actually see her, maybe touch her, mothering impulses would kick in.  I would recognize her as mine and, like a Hallmark commercial, the music would queue and everything would be alright.  The whole situation was like a dream.  I had lain in bed all day trying to believe that I really now was a mother of three.  One of my children had been a part of this world for almost a day and I had yet to meet her.  I thought that seeing her would make it a reality.  

I knew she was sick and the doctors suspected Down syndrome.  Earlier in the day Sergei took a digital picture of her and brought it to my bedside.  I sobbed.  Just under five pounds at birth, she was a raisin, all shriveled and tan.  She did not look like I a baby with Down syndrome.  Presuppositions that existed, unknowingly tucked away in a manila folder in my mind, were popping up.  I expected her to look like she had Down syndrome.  But she was long and thin like her oldest sister and she had a full head of hair like both of her sisters.    

I was wheeled out of the recovery room, frightened, depleted.  I needed to see her, to know she existed apart from me, to really believe that I had given birth.  Moving slowly down the hall, into the elevator and out onto another floor, I was sure that every person who saw me felt sorry for me.  “There is the lady with the sick baby.” 

Doors are often used as symbols; opportunity, closure, safety, entitlement.  The groom carries his bride over the threshold of their new home together, an angry teenage daughter slams the door in her mother’s face, a thief kicks the door down.  In the cartoon “Monsters Inc.”, the scream factory houses millions of doors to children’s rooms.  The monsters go in and out, swinging from one life to the next on the roller coaster conveyor line of doors. 

Even Jesus used the metaphor “Ask and it shall be added unto you, seek and ye shall find.  Knock and the door shall be opened unto you.” 

Reaching out and turning the knob, opening the door and going into my daughter’s sick room was the most difficult threshold I have yet to cross. 

In the corner of the nursery room was a lonely incubator that held my newborn.  My cheeks were wet as Sergei wheeled me up to her side.  She was so small.  I wanted to hold her but settled with reaching through the plastic window and laying my hand on her chest.  Her breathing was fitful, quick.  It sounded like she was having an asthma attack.

“Hi, little one, I am your mommy.”

I needed to hear those words.  She was still, her eyes pursed tightly together, her little chest contracting with every breath.  I sat beside my daughter, quietly, for a while and prayed.  “Beep, beep, beep,” the black screen with the squiggly green line was still with us, ensuring that our daughter was alright. 

I was wheeled out of the sick room, to the elevator, up a floor and back into my room.  I remember rooming in with my other two babies, sleeping lightly, getting out of bed to change a diaper, staring at my newborn’s face for hours.

The remainder of my time in the recovery room with the preoccupied nurse was uneventful.  I slept, I ate a little.  My body started to wake up.  My middle ached and my toes itched.  After Sergei left for the night, I cried. 

The nurse asked me if I’d like to stand up.  I pretended I didn’t understand what she was asking.  There I lay into the night, exhausted and sore but unable to sleep.  The sun set and the night nurse came into my room and asked if I minded if she took the small television in the corner.  I fell asleep listening to the laughter of the nurses watching a Ukrainian soap opera in the hallway.  

Day Ten

I have given birth three times in completely different ways. 

The first time was the easiest.  I had an epidural.  The birth was pain-free.  Soft music played in the background, the doctor on call was a little miffed to be woke up in the early morning and took out her aggression on the chipped red polish on her nails.  I breathed deeply and pushed with all my might three or four times and we had our girl. 

The first six months of Elaina’s life she cried seven hours a day and I sat on the couch in our little Chicago apartment and waited for Sergei to come home from work, beside myself, convinced I was the only woman in the history of mankind who did not possess an innate mothering intuition.      

Zoya’s birth was long and painful.  I let a friend talk me into a natural water birth and the pain was like none I had experienced before or since.  I lugged my huge body out of the tub, down the hallway and back to my hospital bed in the hopes for some last minute drugs, a towel draped over my shoulders. 

Only Zoya could not wait.  She shot out of me while I stood next to the hospital bed, one leg hiked up on the mattress.  She was caught like a football by my mid-wife, her robust cry filled the whole hospital floor.  I fell into bed, oblivious of new life, a black haired, swollen little girl.  My second daughter. 

They say that as soon as a woman bares her child, she forgets the pain and struggle of the labor.  Because she gives birth.  She actually delivers a life.  I have given birth three times.  But the last time, I feel like I didn’t actually give birth.  I think it was taken from me.  I do not remember the third birth experience. 

I have to make up the first few moments of my third daughter’s life. 

And I imagine silence. 

I imagine the baby, blue and tiny, doctors scurrying around the room, hooking her up to monitors and beepers, sticking a breathing tube in her nose.  No cries, no tears of joy and laughter from the proud parents, no welcome and congratulations from the doctors and nurses.  No inquiries of her name. 

I imagine a pause, doctors noticing that beside her struggle for life that she showed some outward markers of Down syndrome.

I imagine pity.   

I imagine professionalism kicking in and the doctors jumping to the task of saving my child’s life.   

I have no memory of remarkable joy when she came into the world.  I don’t get to have those memories because they do not exist.  In those first few moments of living, in her struggle, did she wonder where her parents were?  Did the doctors treat her with any love or tenderness as they slowly pumped life back into her?    

Day Nine

After a quick kiss from Sergei, I was whisked through double doors.  The temperature dropped twenty degrees in seconds.  My teeth began to chatter.  I felt very small and alone.  Nurses and doctors buzzed around the room while Russian words swirled above my head. 

I remember being asked if I would like an interpreter for the birth when we signed our agreement to deliver in this hospital.  Thinking Sergei would be there to help, I said no. 

A thin blue paper robe stripped me of armor and eloquence.  I was rubbed raw, unable to play the part of a person confident in her maker.  My mind was cloudy without a clue of what came next, unable to understand basic Russian words memorized in the first six months of language classes.  I could hardly think of how to extend pleasantries to the staff because of nerves.  Prerecorded prayers I had memorized to date were no where to be found in the usual places in my mind. 

“Help me Lord.  Help us.”      

The smiling doctor was in the operating room with several nurses and the pediatric team and an anesthesiologist.  She greeted me and started to explain about the epidural going into my spine.  Her breath reeked of cigarette smoke and her voice was scratchy. 

The room was the kind of cold you feel in an old woman’s hand or when you sit outside on a cement bench on a winter’s day.

I felt a stinging prick in my lower back, smack dab in the middle.  Immediately warmth spread passed my belly and out to my toes.   

A nurse laid me back on the gurney and placed a mask over my face.  I thought I would be awake for the birth like those television shows you see; the little curtain at the woman’s mid-section, the husband seated on a high stool up by the wife’s head.  The baby’s cries fill the room as the doctor lifts up the child to proclaim “it’s a girl!”

The nurse told me to count backwards from ten and I was confused.  I didn’t know if I should count in English or in Russian.  The hum of the fluorescent lights screamed in my ears.  “Deysyet, deyvyet, vohsehm”, my voice shook, “sehm…”

I floated upwards away from the smiling doctor, a scowl now on his face as he bent over me, away from the anesthesiologist waiting for her next smoke break, away from my friends keeping my husband company in the lobby by swapping birth stories, away from the little one struggling in my womb.  I floated upwards towards a bright yellow light.  Relief flooded my body.  I was asleep.

Day Eight

J and her husband and L arrived within the hour.   

They were upbeat, commenting on the private hospital’s nice rooms, shyly cracking jokes, squinting at me through the room’s bright lights.  All three tried to act like it was the most natural thing in the world to be hanging out in a Ukrainian hospital room at one in the morning.   

I loved them for it.   

The smiling doctor with the thick gold necklace was found and L told him we needed a Cesarean section right away.  He was unsure of the soft spoken American woman.  Once again he said we should wait and see if the IV helped. But L persisted, looking to my husband for linguistic assistance and nodding incessantly as words poured out of her mouth in a mixture of English and Russian.  Her face was stern and her words were pleading.  Eventually the smiling doctor agreed to take a closer look at the baby.   

I found myself waddling towards the ultrasound room, a white bath robe tied loosely around my expansive middle, my black slippers swishing down the hall. 

Everything happened quickly once the baby’s extreme distress was proved on the ultrasound machine.  An anesthesiologist was shaken out of her sleep and on her way to the hospital. The smiling doctor hurried off to prepare for surgery.  The pediatrician on call put on her scrubs, elastic snapping over her shoes.   

Back in my room ready for surgery, I perched on the end of my high hospital bed and looked around at the warm tan walls.  A wooden desk and a matching chair stood against the wall in front of me.  I watched my feet dangle above the cold white tile floor.  They seemed separate from my body.  I wandered where they were taking me and if I even wanted to go.   

I thought about Elaina and Zoya sleeping in their Estonian made bunk-beds at home.  Sergei and I had searched all over Kiev before purchasing the pale colored wooden beds.  Thick cotton blankets pulled up tightly to the girls’ chins, in an attempt to keep the frosty night air that lingered inside our old apartment at bay.  Their Babushka slept in the room next to them ready if needed for a drink of water or a trip to the bathroom.   My little girls, unaware that in about a half hour their baby sister would be here.   

Heavy footsteps came down the hall and I saw my smiling doctor who wanted to learn English poke his head in the door of my room.   

“Gotov?”   

I nodded that I was ready and suddenly two other men were at my side helping me down from the high hospital bed and on to a cold gurney with a thin white sheet.  I settled and my husband came close to me.  He covered my hands with his and prayed for God’s protection, for our child’s health and for a peace in my heart that would surpass my understanding.  When he finished his prayer he looked at me and smiled.  “She’s coming tonight!” 

The orderlies wheeled my gurney down the hall with my husband walking next to us.  Our friends set up shop in the waiting room.  They didn’t want Sergei to wait alone and J wanted to be there to take a picture of all three of us together when the surgery was over. 

Day Seven

The first two years we lived in Ukraine I studied cultural norms and learned how to buy ingredients for borscht and leaned heavily on my American teammates.  They were a life boat in rough waters. 

Having been through culture shock and language classes, many could roll with superstitions still prominent in the culture; spitting over your shoulder three times to keep the “evil eye” away from babies or not whistling indoors to ensure prosperity and wealth.  They had a basket of topochkee near the front door of their apartments for visitors to wear inside instead of shoes.  The call to live and serve in Ukraine was strong and true.  It helped on days when someone was ready to pack up and go home. 

I loved getting to know Ukrainians but I appreciated American banter at team meetings and praying with others in a language that was comfortable when everything else in my life was uncomfortable.  It took so much energy to even attempt to acclimate to the culture.  With teammates and other ex-pats, I breathed, I rested. 

After settling into my room at the hospital the day I was admitted, my friend J called my cell phone. 

“I hope you don’t mind, Gillian, but I called L to tell her about you and the baby.” 

L was another teammate who before moving to Russia and later to Ukraine for a counseling ministry was a post natal nurse in the States. 

J was only looking out for us.  She really was a great mother hen for the whole team.   But I was on edge and a bit flustered and scared.  Her phone call provided me with something to replace my worry.  At least for a couple of minutes. 

“That’s fine, J.  I am glad she knows so that she can pray,” I lied through clenched teeth. 

My friend sensed my frustration and continued on anyway, 

“We are coming up to the hospital.  My husband and I are leaving the kids with a sitter and we’ll pick up L on the way.” 

I was not given a choice.  Thank God. 

A few minutes later the telephone rang again.  This time it was L. 

L is a wonderfully sensitive, soft spoken woman.  I imagine she is a fantastic counselor because when you talk with her she gives you her full attention.   

I explained that the baby had not grown at all since the last visit, how I was admitted and on an IV with glucose and other vitamins.  I told her about the green squiggly lines on the monitor screen, how the baby’s heart beat dropped low, very low when I’d have a contraction. 

There was silence on the other end of the phone.  And then, 

“Gillian, I will be there in a half hour.  The next time your doctor comes into the room you need to demand an emergency c-section.  I don’t want to scare you but in the States your baby would have already been delivered.  She is not doing well.  Listen to me, you have to talk to your doctor.” 

I held the phone up to my ear taking in L’s words.  Was this some kind of bad dream?  

We hung up and I told Sergei what L said.  He went to find the doctor.   

I closed my eyes and exhaled.   

“Please God.  Keep this baby alive.  And help us to know what to do.”  

I was sure I was watching a scene unfold in someone else’s life.

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.

 

My weekend in the village

Last weekend S and the kids and I begged off of life in Chicago and drove to Peoria, IL to meet on-line friends in real life. 

I couldn’t wait to leave.  On the way there I told S I felt like we were travelling to see Polly’s aunties.

And that we were.

Polly’s birth has brought many things to my life.  Brokenness, a clearer vision of what matters most, an opportunity to better myself and those around me, compassion, empathy, joy.

And friends.

I belong to an on-line forum of parents who have children with Down syndrome.  The day I got home from the hospital after having Polly in Ukraine I did a search for the words “parents to children with Down syndrome” and the first site that popped up was this forum.  For over two years I have daily logged on and smiled at sweet pictures, cried over sickness, cheered and laughed with other parents when our kids meet their milestones. 

The first time I looked into the faces of families on the forum I thought, “I can do this.”  With their help and with God’s help, I am doing it.  And the experience is utterly amazing.

“It takes a village to raise a child.”

I love the village I live in.