Posts filed under ‘Ukraine’
Our kids are growing up differently than expected.
In Ukraine I resigned myself to the fact that they loved to eat fish and at some point in life their Russian would be better than mine. It became less important that their childhoods didn’t look like mine. They thrived while living in Ukraine.
Then we had Polly and moved back to the States and now they are into High School Musical 3 and Dancing with the Stars. They ask for frozen pizza for dinner. I resign myself to the fact that their childhood doesn’t look like mine even in Chicago.
Last night Elaina found a photo album of our last six weeks in Ukraine before we moved back to the States. We took turns staring at photos of family and friends. We tenderly touched the pictures; faces, hair, hands. And I started to resign myself to the fact that, for now, their childhood experience would not include Ukraine.
It made me sad.
But the girls are growing up, in spite of where we live. Their experiences living different places; Michigan, Kiev, Chicago have only enhanced them as individuals. They are little girls with big life experience.
Having a sister with Down syndrome has caused them to grow up as well. They learned quickly that life doesn’ always go as planned. They learned that people are different but just as important. In fact, they are crazy about the idea of adding another member to our family who happens to have Down syndrome.
They are growing up well, thanks be to God. They are growing out in their understanding of faith and helping others.
That makes me happy.
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.
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.
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.
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.”
So I have missed two days out of the 31 for 21 challenge. It makes me sad but what are you going to do with stomach flu? And I just figured out that if I post at night it’s already the next day at WordPress. Oh well. Now I’ve confessed and I am moving forward.
I wanted to go back to the way things were.
In the apartment a picture of my oldest daughter sat on our coffee table, a gray cold stare, no smile, no semblance of America. She was beautiful yet so different then how I was at that time in my life. She was Ukrainian. Old yellow photos of my childhood, year after year of a girl with brown hair and a wide, mischievous grin were stuffed away in my parent’s hutch. I was American.
I sat through a ‘welcome to school’ meeting for Elaina’s preschool in Ukrainian grasping at words that sounded like Russian, trying to act like I was taking notes like all the other dutiful, sullen mothers in the auditorium. Zoya no longer complained about adorning tights and pants and a thick black snow suit just to step out the door for half of the year. The girls were growing and thriving by eating fish and beets, salads and potatoes. I finally found a few clothing stores I liked for me and the kids. I actually enjoyed going to my Russian class.
Almost every week someone new showed up at our house church on the second floor of an apartment complex in the Pechersk region of Kiev. I loved Sundays, people stuffed into our living room, the enclosed balcony opened up for one or two more to fit in. There was singing and laughing and food and growth as I sat in the corner of our living room and tried to follow Sergei’s quick mouthed Russian sermons. Mounds of open faced sandwiches were tirelessly prepared after church; mayonnaise and sausage, butter and fish on slices of thick bread with a twig of fresh parsley on top. Toddlers who didn’t make it to the bathroom in time fumbled around the apartment in my kids’ pants.
“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.”