Posts filed under ‘Missionairies’
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.
The next morning I woke early again. Looking around, I remembered where I was. The television was back in the corner. The walls were still bare and I was still sore and confused and scared.
The nurse suggested I get up and go to the bathroom. She was obviously out of her mind. My middle had been sliced open and a baby, plus a large liver looking thing had been cut out of my body. I was sewn up with heavy green thread, the kind you see on an old rugged pillow. The doctor tied a bow at the end of my incision.
My catheter was removed so I no longer had a choice. I could either wet myself or get up.
I was moved downstairs across from the nursery. It was like an apple dangled out in front of me. I was just across the hall from my daughter. By day two I was up and moving, painfully, slowly.
My mother had applied for her passport with the intent to come to Ukraine to help with the new baby. After she heard of the early arrival, bags were packed and without hesitation she boarded a plane for the sake of her daughter.
The first time I took a shower in my hospital room was three days after my c-section. My mother and the nurses where in some sort of cosmic agreement, although they could not communicate, that I needed a shower. It was in the afternoon, the first actual day of my mother’s experience in Ukraine. She had flown in late the night before.
My mom’s remedy for most things in life is cleanliness. Baths, showers, cleaning, generally anything hygienic is good for the soul. One time when I was a kid, I was complaining to her about a particularly hard day. Her advice to me was, “go shit in the tub.” And unsurprisingly, I felt better after a half hour of uncontrollable laughter at her slip of the tongue.
She helped me lug my wobbly body, donned with one enormous Always maxi pad that was supposed to catch buckets of blood while stuck to a flimsy pair of gauze underwear. From just under my rib cage down past my unmentionables, my body felt like a horrible nagging tooth ache every time I moved. I clumsily undressed and my mom helped me step up into the shower. At thirty-one, I am sure that my body had expanded and changed quite a bit since she last saw me in this light.
The hospital was similar to a hotel in the States. It was like all of this was happening at a Best Western. Little bottles of shampoo and conditioner and soap lined up on the shower wall ledge waiting to wash my body.
As a missionary I have not had a good relationship with travel size toiletries. Supporters of our foreign work think we either cannot afford our own products or that the country itself does not sell soap. People took it upon themselves to save up shampoo, lotion, conditioner and soap from their hotel stays and ship them to us in care packages. Good friends of ours working in Mexico received already used tea bags that were still “good” for a second time around. When I’d get care packages like this, I’d throw it all in my bathroom closet and walk down to the supermarket. There I would get a big bottle of Dove shampoo, some Pringles chips and a couple candy bars.
My body ached as I attempted to get clean in the shower. It felt like there were little flecks of sand in the water, but I just assumed I was mistaken by my own filth. The worst pain was trying to lift my hands up to wash my hair. That motion localized and climaxed the pain of my incision. After doing the best I could, I tenderly stepped out of the shower. Drying was going to have to be an air thing as I reached for my fresh pair of queen size gauze underwear with the Always maxi pad, compliments of the hospital.
By the time I was in my new throw-away underwear and fresh night gown I felt like a wilted flower that had been pounded on by a harsh rain. I was clean, but nearly wiped out. Hoisting my thick lifeless belly up onto the bed I commented to my mother about the little pebbles of dirt that were all over the shower. “That’s what surgery will do to you,” my mom said in all her wisdom.
As soon as I was on the bed I was asleep. I don’t remember getting from the shower to the bed. Later we found out that the hospital did have a problem with dirt in the water for a few days. By the end of the first week the dirt was gone.
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.
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.
The first two years we lived in Ukraine I studied cultural norms and learned how to buy ingredients for borscht and leaned heavily on my American teammates. They were a life boat in rough waters.
Having been through culture shock and language classes, many could roll with superstitions still prominent in the culture; spitting over your shoulder three times to keep the “evil eye” away from babies or not whistling indoors to ensure prosperity and wealth. They had a basket of topochkee near the front door of their apartments for visitors to wear inside instead of shoes. The call to live and serve in Ukraine was strong and true. It helped on days when someone was ready to pack up and go home.
I loved getting to know Ukrainians but I appreciated American banter at team meetings and praying with others in a language that was comfortable when everything else in my life was uncomfortable. It took so much energy to even attempt to acclimate to the culture. With teammates and other ex-pats, I breathed, I rested.
After settling into my room at the hospital the day I was admitted, my friend J called my cell phone.
“I hope you don’t mind, Gillian, but I called L to tell her about you and the baby.”
L was another teammate who before moving to Russia and later to Ukraine for a counseling ministry was a post natal nurse in the States.
J was only looking out for us. She really was a great mother hen for the whole team. But I was on edge and a bit flustered and scared. Her phone call provided me with something to replace my worry. At least for a couple of minutes.
“That’s fine, J. I am glad she knows so that she can pray,” I lied through clenched teeth.
My friend sensed my frustration and continued on anyway,
“We are coming up to the hospital. My husband and I are leaving the kids with a sitter and we’ll pick up L on the way.”
I was not given a choice. Thank God.
A few minutes later the telephone rang again. This time it was L.
L is a wonderfully sensitive, soft spoken woman. I imagine she is a fantastic counselor because when you talk with her she gives you her full attention.
I explained that the baby had not grown at all since the last visit, how I was admitted and on an IV with glucose and other vitamins. I told her about the green squiggly lines on the monitor screen, how the baby’s heart beat dropped low, very low when I’d have a contraction.
There was silence on the other end of the phone. And then,
“Gillian, I will be there in a half hour. The next time your doctor comes into the room you need to demand an emergency c-section. I don’t want to scare you but in the States your baby would have already been delivered. She is not doing well. Listen to me, you have to talk to your doctor.”
I held the phone up to my ear taking in L’s words. Was this some kind of bad dream?
We hung up and I told Sergei what L said. He went to find the doctor.
I closed my eyes and exhaled.
“Please God. Keep this baby alive. And help us to know what to do.”
I was sure I was watching a scene unfold in someone else’s life.
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.
The names in the following post have been changed to protect those unknowingly written about on my blog. The people are real but their names are different.
You never know who you end up sitting next to, or what their story is.
I posted about Elaina signing up for gymnastics. I waited outside her class with a book on the first day. I wasn’t very interested in reading. The book wasn’t that good.
Another mother sat next to me. Her book looked better than mine. I asked her about it and we chatted a bit here and there. She laughed when I overheard someone mention that the gymnastics class was for experienced gymnasts. The look on my face communicated that my child was a beginner. Elaina would just have to pretend that she knew what she was doing.
I remember thinking this lady was nice.
The next week, a rainy Tuesday, S had a meeting. So off to class we all went; me, Elaina, Zoya and Polly. I had a headache. Polly was fussy. Zoya decided spur of the moment that she really wanted to take gymnastics instead of ballet so her nose was out of joint.
We shuffled up the cement stairs and into the building. Polly straddled my hip, coat unzipped and falling off; her hair was coming out of the ponytail on the top of her head. It hung in her face.
The class is just an hour, but I wasn’t about to hold Polly on my lap for the duration. We couldn’t play outside at the park because of the rain and the floor looked pretty dirty, well, dirty enough that even this seasoned mother of three wouldn’t put her youngest down to toddle around on her hands and knees. Plan B was to drop Lainie off and head home. Sergei would pick her up later.
The nice mom with the good book walked in a few minutes after us. Immediately, she noticed Polly.
“You’re the minister’s wife, right?”
I was surprised. Most people who know that S is a minister try to avoid the topic.
“Yes, how did you know?”
“I’m Sarah, Charlie’s mom.”
My mind jogged back to last summer. We were new to Chicago. One day S came home from the park with the girls. He told me that a lady came up to them. She wanted to meet Polly. As they talked, he found out that she, too, had a child with Down syndrome. But her son had serious health issues, and he passed away.
“She gave me her phone number and wants you to call her,” he said.
I was scared to call. While punching in her phone number on my cell, I took a deep breath. Waiting, I looked out the window. The view was still new to me. The Japanese maple tree planted in front of the porch was in full bloom.
I left my name and number after the beep.
A few days later, she called back.
It was getting dark outside. All the windows were open. People chatted as they passed our house on the way to a restaurant or a bar. S figured out how to get a few stations in on the TV with the rabbit ears and we were watching a rerun. I can’t remember what show it was. But I do remember our house was barren. The living room held two chairs, empty bookcases, the old television. Boxes lined up against the wall.
We talked about Polly for a little while. I briefly covered our history, …lived in Ukraine for a few years as missionaries…had Polly there…she was very sick at first, in the NICU for twenty days…on the sixth day a blood test confirmed the Down syndrome…six weeks later we were on a plane, headed back to the States, primarily to care for Polly, holistically, because we all needed the care. We talked about Early Intervention in this area and about therapists who were good. I wrote down her recommendations.
Then I asked her about her son.
And she began to cry.
“He had a lot of things going on. His little heart just couldn’t take it all. When we found out he had Down syndrome, I told my husband we could handle this. I knew that we would have struggles, but I didn’t think Down syndrome was that big of a deal. But his health issues were something different, entirely.”
After Charlie died, Sarah started a preschool named “Charlie’s Place.” The goal of the preschool is to provide a safe, learning environment for all children. Sarah’s dream is to see the preschool integrated with typical kids and kids with special needs, so that they can learn from one another.
That evening, sitting in the dinning room, in the dark, I said something to this mother that still haunts me sometimes.
“It’s taken me a while to grieve Polly’s diagnosis.”
I did not decide to grieve. When Polly came along it’s not like there was a drum roll somewhere off in the distance. I did not say, “And now, officially, I will fall apart.” It happened gradually. It was like a small cloud, quietly, most assuredly taking the place of th sun, until you are left in a shadow.
I felt my heart sort of tip a bit after the words were out of my mouth. I gasped. I was ashamed. This woman was actually grieving her child. She couldn’t hug him anymore, or kiss the insides of his elbows, or watch him smile and hear his laughter as he swings back and forth at the playground.
These are the things I’ve been thinking about this week: Writing about Emma and then, Ella, running into a mother who is bravely living life despite her great loss. Walking around the neighborhood, pushing Polly in her pink polka-dot stroller, Lainie and Zo leading the way with their brightly colored helmets, peddling as far away from me as they dare. Indubitably stopping at a street corner.
I can’t help but pay attention to the blessing of health. And at least, for today, not take it for granted. I’ll clap for Polly in therapy every time she puts another block in the bucket. I’ll act silly, smile and dance around when she cruises up and down the couch. I will let Zoya read me “Not Dots” for the fiftieth time, simply because she is reading. I will not turn a deaf ear to Elaina as she talks to me again about friend troubles at school.
Polly’s face lights up when her favorite therapist walks through the door. The one who lets her pick what to do next, who applauds after an impromptu song, who lets Polly pick the same book every week, because she knows it’s her favorite. They like to play with playdoh together. “Rolling, rolling, rolling, rolling, roll it out, roll it out.”
This is one of the therapists Charlie’s Mom recommended.