Day Twenty-seven

We were in the hospital a total of twenty days.  The last week Polly was well enough to be out of her incubator.  During the day she stayed in my room with me and we sat on the high hospital bed and I tried to get her to drink two ounces of formula out of a bottle.  It would take forty-five minutes.  She tired easily and her suck was weak.

Polly was so small, so bird-like.  I willed her to drink formula, whispering softly in her ear.  Having her in my arms helped my depression, although I was still scared about the future, hers and my own.

Sergei brought Elaina and Zoya over occasionally to visit us.  I’d laugh when they walked into the room, their hair all done up, Zoya wearing Elaina’s shirt, two sizes too big, Elaina squeezed into a pair of Zoya’s pajama paints.  My mom did the best she could in a foreign country, hours on end with two rambunctious girls ready to play, too afraid to leave the apartment.  She ate a lot of M&Ms for six weeks.

The girls decorated Polly with kisses and affection.  I watched them love her effortlessly and wished I could follow their lead. 

I was ready to leave the hospital but fearful too.  Polly still wasn’t eating well and I knew once I left my little tan room life was going to get crazy.

We decided to move back to America.  I could hardly believe it.  Suddenly, all the things that I struggled with in Ukraine and about Ukraine were endearing.  It was mine.  Something getting taken away from me.

When I thought about leaving all that we had worked for, all that God had done in and through us in the last three and a half years I was sick to my stomach.  And in the next breath I was sure that we were doing the right thing.  The best place for Polly to thrive, to receive therapy and medical attention was in the States.  It was the right decision for our family.

Sergei was already scrambling around, passing on the baton at church to a gregarious man who was ready for the call.  He met with the land lady to sever our lease.

The plan was to leave the hospital with our new daughter that week.  And it seemed the whole hospital was unsure about what to do.  Nobody knew how to send us off.

Day Fifteen

I felt guilty that I wasn’t there more often.  I was not the vigilant mom I imagined I would have been in those circumstances.  Whatever energy I had built up dissolved quickly while standing.  No one offered me a chair.  My husband finally brought me a chair on the fifth day of our stay.

I was sore and weak but the real reason why I didn’t stay long with my baby was because of my own self pity and fear.  When I was there, I sat despondently beside my lifeless new born, feeling sorry for myself, almost embarrassed.  I did not see her.  I saw a sick, possibly defective baby.  A baby the doctors insisted was mine. But I wasn’t so sure that she was the same little one who had prodded my tummy and kicked at my bladder all those months.  There was no familiarity. 

I imagined the nurses looking at me, nudging each other that this was the mom of the sick baby.  I imagined half of them feeling sorry for me and the other half confused as to why I didn’t just abandon her. 

No one in the nursery met my gaze.  Most greeted me curtly first thing in the morning and then looked through me during the remainder of their shifts.  After moving from surgery to post partum, I experienced the first of many hurtful words from the nursing staff. 

“That’s what you get for thinking that you could have three normal children.” 

In Ukraine, it is very common to have just one child.  Two children is a large family.  According to this nurse, having a third was just asking for trouble.

I sat in the nursery and watched the healthy babies through the window.  It made me sad.  Other post partum moms waddled in and out in their white terry cloth robes to take or deliver their babies.  They looked tired, sore, flushed.  But they looked happy.  Chunky pink babies swaddled in gauzy blankets slept dreamily.  Others thrashed and screamed for food.  About four feet away, they were a world away from me.  More then a window separated us. 

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. 

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.

 

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.

Oops!

The tooth fairy forgot to come last night. 

We had one very unhappy six year old at our house this morning.

I suggested that maybe the tooth fairy was really far away last night like in China and couldn’t make it back in time.

Then my eight year old leaned over and whispered “I think I know who the tooth fairy is.”  I said nothing.

And a horrible tooth fairy at that.  

I managed to spoil both of my children’s childhoods in about fifteen minutes.

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.

Bath time

When I was a kid I loved to take baths.  Not quite to the environmental era, I was allowed to fill the tub up close to the top.  I loved steaming water, the kind that actually causes you to steep like a tea bag.  When I got out my legs would have a pulse. 

It felt good.

I am still all in favor for baths…for the girls.  Bath time is play time.  All three blonde beauties go in, along with sea creatures, cups, wash clothes.  The water is turned off way before the half way mark.  And they play.  They sing songs all the while making a world under the sea comparable to any red head wanting to be “part of your world.”

They stay in the bath way too long. 

I remember my mom making me get out after about fifteen minutes when I was young.  “You’ll get all prunny.”

Well mom, on a rainy day with no therapy, no school, nowhere to go, a day where everyone is already bored by nine-thirty in the morning…

I’m bringing prunny back.

“Never go full retard”

Saturday was a rainy day so S and I took the girls and headed out to the suburbs to make a friendly visit to IKEA.  It was one of those outings that we weren’t 100% sure about doing.  Traffic, rain, cranky kids, the chance of spending too much money on things we never knew we “needed” until we were there.  But off we went. 

I was grouchy because it was my turn for the gooey eyes.  I had to wear my old pair of glasses with an even older prescription.  The sun hurt my eyes and I couldn’t figure out a way to fit my huge sunglasses over my thick eye glasses.

Walking into the store, Zoya decided we all needed to try the large revolving door.  Lainie and Zo and I shared our compartment with a group of teenage guys.  S and Polly chose the open/close door route. 

One of the teenagers thought it was funny to do the hokey pokey with the revolving door, he stuck his right foot in and out and our whole compartment started and stopped, started and stopped.  His peers reprimanded him.  Other people gave him dirty looks.  Elaina grabbed my hand.  This was exactly what she was afraid of.  Getting stuck in the door.

Another guy in the teenage group told the kid messing around with the door he was a retard.  He called him retarded two or three times.

And I felt a stab in my heart.  My shoulders stiffened.  I gulped and stared at the kid.

I wanted to hold Polly up to him and say that at some point in her life she will probably officially be labelled ”mentally retarded” on a piece of paper stored away in a tan file cabinet.  I wanted to tell him that my third daughter has Down syndrome and that his words offended me greatly.

I looked down at my arms.  They were empty.  I remembered that S had Polly with him.

I said nothing.  I did nothing.

I walked away from the revolving door holding tightly to my other daughters’ hands.  My eyes were watery and it wasn’t because of Pink Eye.

Now, I’ve heard the word “retard” a bunch of times.  Though I am ashamed to admit it, I am sure I used the word in high school and junior high.  Some family and friends have said it in my presence.  Most have quickly apologized.  I graciously accepted saying I understood they were not thinking of Polly with this term, therefore I was not offended.

I am learning that I need to be offended for my daughter’s sake.

Polly is two years old.  I have learned more than I ever deemed possible about stereotypes and the world of disability and about actions and words that hurt people with disabilities and their families.  And I’ve learned that like it or not, I need to be an advocate for my daughter.  Of course, there is still a lot to learn.  My family is a part of the disability community.  We are blessed that we are. 

This morning I add my voice to many others; mothers and fathers, siblings, friends, grandparents, to fight for those who some times are unable to fight for themselves.

Ben Stiller’s new movie Tropic Thunder premieres today in Los Angeles. 

S and I have enjoyed some of Stiller’s movies over the years.  But we will not be watching Tropic Thunder. 

Because of a scene in this movie now there are t-shirts for sale with the words “Never go full retard.” Go here to read what Timothy Shriver, Chairman of the Special Olympics wrote about the movie for the Washington Post.  Go here to catch a paraphrase of the scene I am referencing.

I am writing this post because I want to fight against the phrase “never go full retard” albeit in a small way.  

In my mind’s eye I see another family, a few years down the road, stuck in a revolving door at IKEA, a mother holding a new baby who happens to have a disability and some kid telling another to “never go full retard.” 

The goal of this post is to save that mother from that pain.