Posts filed under ‘Grief’

My response to a new mother of a child with Down syndrome

Today has been a difficult day for no reason in particular. 

I woke up feeling defeated and deflated…and still had yet to start the day.

My attitude got worse as I gathered up hours all around me, I made bad choice after bad choice to sit around and lull myself into a sad comma.

This evening after dinner, Sergei walked to the library with L & Z.  After cleaning up the kitchen I put in a video for Polly and sat down to peruse some of my forums. 

And I found a post from a mother who just found out her unborn child has Down syndrome.  She is in her darkest period…getting over the shock of such a diagnosis and grieving the loss of the child she thought she was going to have.

Polly sat in the living room, mimicking words and signs from her show and I hit the respond button to this women’s post.

And this is what I wrote:

Thank you for being brave and coming here to tell us how you are feeling about your daughter’s diagnosis.  You are normal…most of us have been through this and we want to support you.

Let yourself grieve…give yourself time to process all of this and I’d even dare to say go to the end and back, think about everything this will mean for you and your family. Your emotions are expected and it’s common to play the “what if” game. I think it’s all part of this.

One day you will look your little one in the eye and you will be washed from head to toe with a wild love for her…it will clarify so many things in your life, so much so that many other things and experiences will pale in comparison.

For some of us, the beginning was so dark as we grieved the loss of the child we expected. And then… I get giddy thinking about it…, then it’s like lightning zapping you a million times a day, this love for your child who you thought you wouldn’t be able to love.

Oh the light that my daughter brings to my life.

It’s like living near the sun.

My prayers with you!  God bless.

When I finished writing to this woman, whom I understand, whom I am sorry for because of the pain she has today, I went over and scooped up Polly for a cuddle and kissing fest.  We laughed and I looked at her hard and long, usurping all the Vitamin D I could from her pores.
 

  

I love this little girl.

 

lainies-hair-and-zoo-018

March 20, 2009 at 1:02 am 11 comments

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.”

October 22, 2008 at 7:38 pm 2 comments

Day Nineteen

Breakfast consisted of oatmeal and sour milk, sometimes I was given a thin pancake with cheese.  Every day I ate potatoes mashed with water, no butter or salt, boiled chicken or pork unseasoned, bland soup with beets and carrots, a baked apple, weak black tea.  My friend snuck me in a box of chocolate truffles when she visited.  At night I’d take one piece from the box hid in the table next to my hospital bed underneath pieces of paper; emails from friends and family promising their prayers, fact sheets and information about Down syndrome.  I licked my fingers clean. 

I walked down to the water cooler to fill up my bucket.  I’d walk slowly, peeking into other rooms, watching moms coo at their healthy newborns, bouquets of bright vibrant flowers in glass vases in the corner.  Some mothers were watching television, passing time until they would pack up to go home.

Several times a day an orderly came to my room asking if I needed any fresh towels or a new bathrobe.  I was disoriented, unsure, I could not understand what she was saying.  I’d nod and go back to what I was doing.  Piles of towels and bathrobes were stacked in the corner of my room. 

My green threaded incision started to heal and my daughter struggled in her incubator.  She still could not breath on her own, therefore could not be held.  I resigned myself to sit next to her, my hand resting on her heel.

A few months after Zoya’s birth I remember waiting in my car in line at a gas station.  An old man with a red baseball cap was in front of me, pumping gas in his rusty blue truck.  Assumingly he had children, which meant that at one point ihe and his wife had a newborn.  That day I sat and watched the old gentlemen, amazed that he had made it through the very difficult task of sustaining a life.  Something so daunting to me at the time.

I ate, I walked, I sat by my new baby daughter, Polina, and I examined her.  Sergei and I took turns.  “Does she have Down syndrome?  She doesn’t, does she?  Wait, her eyes do slant a little bit.  But she doesn’t have a single crease in the palm or her hand?  She’s long, but her neck is a little thick.”

The fifth day after Polly’s birth I decided to take a walk outside.  Tentatively, I stepped out of my pajamas and tenderly pulled up my maternity jeans and a black t-shirt.  My mom and I moved slowly gazing up at the green trees, the large white hospital ominous in the background.  People walked down the street, on their way to work or to see a friend, an umbrella tucked under someone’s arm because there was a chance of rain.  I saw a mother step out into the sun, she looked on as her husband scrambled around her; baby in car seat put gingerly down at her feet, race to the car and slowly bring it up to the waiting new family.  I watched all three settle into their car and drive off to their life.  There I stood, in limbo, my arms empty, my middle aching.  A new mom, but not really.  

October 20, 2008 at 1:17 am 5 comments

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 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.

October 3, 2008 at 7:04 pm 2 comments

Should I?

 

I wrote a lot after Polly was born.  I have the whole tearful, devastating, beautiful story of my first year as Polly’s mom smudged into a couple of journals.  I read through them from time to time to convince myself that everything really did happen.  Then, during our sabbatical year in Michigan, I wrote almost daily about how it felt to go through the grief process of having a child with special needs.  At the time I had high hopes to write a book about it someday.  And maybe I will.

October is Down syndrome Awareness month.  There is a challenge for bloggers who are touched by Down syndrome to write every day for the month of October.  It’s called 31 for 21. 

I’d like to do it.  But you all know just how sporadic my posting is.  Then I thought about my story.  The pages that live inside my head and in my computer hard drive.  What if I post my story of having Polly in Ukraine on my blog in daily installments?

I don’t know.  There’s a lot of things about my story that aren’t things I’d like to admit to the world (or to the small collective who actually follow this blog).  And if I do it, I have to be honest. 

I definitely have enough material to last 31 days and knowing me I would probably end up adding on and omitting, you know, I’d probably play around with my playdough of pages until it looked like something completely different anyway.

What do you think?  Should I take on the challenge to blog for 31 days straight about Trisomy 21, a.k.a. Down syndrome?  Specifically, should I retell my story of delivering Polly in Ukraine here on Pocket Lint?

I’m looking for opinions here.  Drop me a line and let me know what you think.  I have until October 1st to decide.

If you’d like to take up the challenge, go here for the rules and details.

September 29, 2008 at 4:21 pm 14 comments

Condolences

Evan Kamida, July 30, 2000 – July 24, 2008

My heartfelt condolences and prayers go out to the Kamida family on the loss of their son, Evan.

Go here to send your love and support.

July 26, 2008 at 1:16 am Leave a comment

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