What we do

October is Down syndrome Awareness month.  Last year during this month I wrote part of our story about having Polly in Ukraine and in the midst of her fighting for her life in those first weeks the news of her extra chromosome.

It was a cathartic month, writing about that experience, remembering tears and joys, sadness, darkness, light.

With Evie home just over two months, there’s no way I can blog every day this month. 

But I’m going to do a few posts.  And I’m going to get practical.

I want to talk about what we do; what I do as a mother of a child with Down syndrome.  Parenting Polly and now Evie is different than parenting my other kids.  I’d like to explain some of that.

It’s also strangely, beautifully the same.

What we do; Sergei and I, is the same thing most other parents do.  We kiss boo boos, make dinner, screw up, and try to figure out 2nd grade math.

There are things we do for our kids with DS; it’s our kind of normal but not a usual component of every day life for a family.

But it’s what we do.

And I’m going to talk about it.

Stay tuned.

Day Thirty-one

I am amazed that I actually posted the whole month of October for Down syndrome awareness month.  It has been a wonderful experience for me to go back to the time of Polly’s birth, to look at what I wrote then and fill in the blanks, to share with others.  Thanks to those of you who read my words and commented here and there.

We’ve come a long way.  I’m hardly ever sad that Polly has Down syndrome these days.  It does happen sometimes, but the feelings are fleeting.  I learn so much  about life and myself and God from Polly.

And now I suppose we are ready for a new story. 

Sergei and I have committed to pursue the adoption of a little girl from Eastern Europe who has Down syndrome. 

I can’t really explain how we got here.  We have talked about adoption and after my time of grieving Polly’s diagnosis our conversations about adoption included the words Down syndrome.

Then I saw this little one’s face and I knew that once again our lives were going to change.  And although it will be a difficult and tedious process and at times I will wonder why in the world we would commit to something like this it all will pale in comparison to what God has for our family as we step out in faith.

This is Veronika and she is six months younger than Polly.  God willing, if we get her we would like to change her name to Evangeline.  We found her through an on-line ministry called Reece’s Rainbow.

Pocket Lint readers may have to make room in their lives for a little more lint, as do we.

Day Thirty

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

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

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

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

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

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

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

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

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

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

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

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

Day Twenty-nine

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

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

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

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

The city looked different to me.

Day Twenty-eight

PERSPECTIVE!

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 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 Twenty-four

 To say that I was not prepared for Polly’s diagnosis is putting it lightly. 

The first few days after we knew the test results were positive, I was dehydrated and shattered and shocked.  It was not really a shock but more like continual zaps. 

Each day was like a labor contraction.  I fell asleep thinking that I absolutely could not bear the next day.  But the next day came, like all labor contractions do.  Many moms have said, and I agree, that the anticipation of a contraction during labor is almost worse than the actual contraction.  That is why the rests in between are unbearable. 

The only thing I could say over and over after Polly’s diagnosis was, “I don’t want this.”  I could not say that I did not want her.  Well, not out loud anyway.  I was a missionary for heavens sake.  But I didn’t want her.  I had horrible thoughts.  Thoughts that a mother assumes she is unable to have.  “Maybe she won’t wake up today.  Maybe I will get my life back.”  I’m a Christian.  I am not supposed to believe in luck.  I felt like the most unlucky woman in the world. 

A time in life that is supposed to be a hallmark of great happiness, lay deflated in the pit of my stomach.  I wasn’t paralyzed with grief, I was deadened.  I was living in a different, fuzzy world.  I tried to put on a brave face like a layer of make-up every time I left my room.   

It was difficult to sit in the nursery with Polina, unable to hold her, unable to care for her physical needs, not wanting to care for her emotionally.  Sometimes I was able to get outside of myself and then I was ashamed of what I saw.  As believers we are told to be good testimonies to others.  The hope is that others will get to know Jesus by watching us.  What a horrible knock-off.  I tried to muster up the strength to pretend that I was handling it all well.  Mostly I rolled with the disconnect I felt towards my child and towards my life and towards my faith.  I would sit quietly by my daughter in the nursery for a while and then race back to my room and cry until I fell asleep.

Remember when we were little, how sometimes an elementary school day felt like it lasted a lifetime?  You would find yourself looking at the clock, thinking, ‘surely it’s time to go home now,’ only to find that it wasn’t even lunch time yet?  I imagined that my life would now be a really long day in school.

Sergei came to the hospital early every morning, a black thin-lined Bible tucked underneath his arm.  He took turns sitting with me and the baby all day long.  We cried, we prayed, we talked about the “what ifs” of our future.  We wondered about how to live now.  Most days ended in a good place having successfully broken through the chaos of our emotions, grabbing on to whatever comfort we found in God and in one another.  Then he would leave my little hospital room around nine at night, unto his next duty of taking care of the kids and my mom at home and I would sit on my bed, underneath the large fluorescent wall light, on top of the crisp white sheets, completely lost again. 

My middle daughter cannot sleep without her favorite pillow.  I could not breathe that week without my husband.  The next day he would find me lumpy and sad, and we would start again our attempts at healing for the day.

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.”

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.