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Day Twenty-two

 “Then God looked over all he had made, and he saw that it was excellent in every way.  This all happened on the sixth day.” Genesis 1:31

The sixth morning of Polina’s life was bright and clear.  The air outside was crisp.  The sun was already high in the sky.

I stood looking at my daughter, my hand pushed through the plastic window, resting gently on her leg, my fingers gripping her heel.  I was happy because she had her eyes open. 

It was a busy morning in the nursery.  People rushed around, going this way and that; some were washing equipment, others changing babies, giving them wash cloth baths and putting on clean fitted sheets in the cribs.  I wasn’t used to so much action.  It made me tired.

About this time every morning I would meet up with the doctor on call, the one looking after Polly.  I was not surprised when I heard footsteps coming from behind.  Turning I saw the rock star Pediatrician.

 “Dobre Utra” I said, greeting her with a smile. 

The Doctor looked down at her feet and when she looked up her gaze did not meet mine.  She looked passed me and focused on the sunshine streaming in through the window.      

The morning after my daughter’s traumatic birth a sharp needle broke through her placid skin, diving into a vein.  A vile quickly filled with her blood.  Then it was closed up, labeled and sent off to be tested for an extra chromosome in her cells. 

We were told it would take two weeks to get the results.   

Polina’s blood was to determine our future.

I have always been afraid of heights.  This fear is shared with others in my family; my father, my oldest daughter.  In middle school I was the kid who wouldn’t go on rides at amusement parks.  I worked hard those days, pretending I preferred the carousal or that I really did think my recording of The Wind beneath my Wings had talent, but everyone in my class knew that I was scared. 

I am even a little jumpy in elevators.  Anywhere you can fall.

“I am here to tell you, with disappointment, Gillian, that your daughter has Down syndrome.”

No “good morning, how are you today?”  No “will you husband be here soon because there is something I’d like to discuss with you.”

Sometimes I dream that I am free falling.  They say if you actually hit bottom in your dream that you are dead in real life. 

I stared at the woman in front of me.  I blinked a few times.  I hit bottom. 

My earliest memory of a person with disabilities is enclosed in fear.  I was a young girl, a toddler really, at an outdoors barbeque with my parents.  The whole morning I had played and swam and ate watermelon.  That is, until I saw a woman with Down syndrome.  I noticed she was different right away and it scared me.  I found a place to hide, a tent.  All day long my parents tried to get me out of the tent.  They lured me with ice cream and hamburgers.  I wouldn’t budge. 

I looked around my daughter’s nursery room.  There were cribs and nurses and diapers and equipment.  But there was no place to hide.

The doctor droned on.  Her painted face was hard, like a brick wall.

“So what do we do now?”  I cut in. 

I wanted to fling myself on the floor, bang my fists and tare my clothes but instead I stood silently, blankly.  As adults we want to look together.  It is one of the most nagging sins. 

The Doctor talked about other health concerns.  Her words had no sound.  I watched her painted face contort as she mouthed words.  My ears felt like they were stuffed with cotton balls.  It was like I was under water. 

When there was a lull I blurted out a hurried “spaseeba”, my attempts at a thank you. 

A better woman would have bent down and drawn close to her baby.  She would have looked into the baby’s sleepy eyes and vowed to love her and to protect her and to treasure her. 

I turned and ran out of the room.  I did not even look at my child.  If I stayed, I might have turned to salt, like the woman in Genesis who looked back to her city as she fled.  I reached my room across the hall, already sobbing and yelling.  And some how I was detached, it was like I was watching a scene unravel in front of me.  I didn’t recognize who this person was crying and screaming.  I fell onto my bed and howled like a person getting put into a straight jacket.   

In the last five days while sitting for hours in my quiet tan hospital room I had considered every scenario in my head.  I played them over and over and prayed to God for strength.  I knew there was a great possibility that my daughter had Down syndrome.  But I had never thought about how it was going to feel.

Instantly, several women surrounded me.  One nurse patted my arm.  Someone handed me a small plastic cup filled with thick purple liquid.  Each woman carried on her own personal monologue directed at me.  Dazed, I gulped down the syrup.  The rock star stood closest to my head on the right.

“Stop crying”, she told me.  “Yes, it is terrible that your daughter has Down syndrome.  But there is nothing that can be done.  Now stop crying!”  The other women nodded in agreement, still patting me and saying “neecheevo, neecheevo, it’s nothing, Gillian, it’s nothing.”

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October 22, 2008 at 7:38 pm 2 comments

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.

October 21, 2008 at 6:40 pm Leave a comment

Day Fourteen

The nursery quarters consisted of three rooms.  Each room was completely visible to the other.  The bottom part of the walls were like a cold dark January day, the top halves were windows.  The rooms were strictly functional.  Nothing in them celebrated the new lives they held. 

On the right was a room lined with four or five bassinets against one wall.  A diaper changing station occupied one corner.  A rocking chair where nurses sat to feed or soothe a newborn was in the other corner.  Each clear, plastic bassinet had a blue or pink card on the front with the name, weight and height of the child inside.  

The room on the far left held four elaborate warming beds, donned with bright yellow lights.  Two or three babies lay under screamingly bright lamps.  The penetrating light nursed them to healthy bilirubin levels, changing their carrot-like skin back to newborn pink.  The babies were spread eagle with little black tanning masks over their eyes.  They looked as if they were enjoying an Aruba vacation.  I half expected an exotic drink with an umbrella resting in a little hand.  I wanted to climb up with one of them, scoot him over and enjoy the warmth on my skin too.  I was jealous of these babies and their mothers.  If only a bright light could bring my daughter back to full health.

The middle room was for babies who were sick.  It was plain except for medical equipment. 

And there our child was, alone. 

The machines hooked up to her showed she was alive.  Her domed bed was adorned with wires and switches.    Oxygen and warmth pumped into her little plastic house.  She too had a pink card taped on the right side of her plastic house.

But the card did not have a name written on it.  The birth surprised us three weeks early.  We had yet to decide on a name.  After her birth my mental list of names did not fit her.  Though in many ways she resembled her sisters, honestly, I could not consider choosing a name.  I still felt like I was visiting someone else’s sick child. 

Life was happening around her but not in her.  While visiting I concentrated on her body to ensure that her chest moved up and down.  Her actions, if any, were slight.  She hardly ever opened her eyes.  Her lips were crusty and peeling.  Just under five pounds you could see her bones sticking out of her limp flakey flesh.  Her body was long.  She had big feet and a full head of golden brown hair.  I remember thinking that she looked like a grumpy old man at the end of his life, too weak to bother with the rest of us.  I was allowed to open the plastic window and lay my hand on her body or hold her hand for a couple of minutes here and there.  Her oxygen went low when the window was open.  I liked to hold onto her heel.

I stood by her incubator in small increments of time for the first three days. My incision ached and I became light headed often.  Every two hours a nurse would take a tiny tube connected to a bottle of formula that held a few ounces.  The nurse would place her hand on the back of the baby’s neck, lift her head a bit and when her lips parted the tube was placed inside her mouth and then pushed down her esophagus and into her stomach.  Instantly the liquid would disappear.  Every time it was very quick.  I asked the nurses to let me know when they were feeding.  Usually I did not find out in time. 

October 14, 2008 at 7:24 pm 1 comment

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.  

October 13, 2008 at 2:17 am 4 comments

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?    

October 10, 2008 at 9:11 pm Leave a comment

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.

October 10, 2008 at 2:13 am 1 comment

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. 

October 8, 2008 at 8:46 pm Leave a comment

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