Posts filed under ‘Having a baby’

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.

 

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March 20, 2009 at 1:02 am 11 comments

Day Sixteen

We met the head pediatrician and her colleagues the morning I woke up in the gray, bare recovery room, the morning of the emergency c-section.  It surprised me when I saw a whole team of doctors pile into our room.  I wondered if that’s just how it was done in Ukrainian upscale hospitals but soon learned that they were there because my child was sick.  Because this was serious.

The main doctor became “the rock star” to us because her shoulder length hair was a brassy blonde, almost gold with three other colors thrown in for good measure.  She wore thick make-up; deep blue eye shadow, bright pink blush and rich, ruby red lips.  She looked official though, clipboard in hand, stethoscope draped around her neck, a crisp white medical coat with clothes underneath that were bright and stylish.  The doctor next to her, who ended up being the kinder of the two, had dark brown hair and wore no make-up, a large mole sat above her lip on the right side of her face.  She wore sensible black shoes. 

My daughter had low blood platelets.  She seemed to have some kind of infection in her blood but they could not figure out why nor how to fix it.  Her body temperature and breathing were being helped in the incubator.  She was a bit jaundice too. 

That bleak morning, in hushed tones the rock star said it was too soon to know if the baby could fight off the infection.  They were doing everything they could for her.

Elaina had jaundice the first few days of her life what seemed like a million years ago in our little apartment with the porch in Chicago.  I sat outside with her while the sun seeped vitamin D into her skin making everything OK.

Shaking my head, I realized the rock star was still talking.  Russian words fell off her tongue, cutting through the silence and apprehension thick in the room.  I heard the words “syndrome downa” and knew she was repeating what I was told earlier; that my third child may have Down syndrome.  I looked over to the side table next to my bed.  There sat a tan telephone, a plastic cup filled with ice water and a straw and three pages of information about Down syndrome.  She said that they had already taken a vile of the baby’s blood and sent it off to a geneticist for testing.  We should know in two weeks.

The rock star said she would try to get the test results as soon as possible and then depending on what they are, my husband and I would be given options of what we would like to do.

“We know what we are going to do with her, we’re going to love her,” I thought to myself.

I said nothing.

October 16, 2008 at 7:18 pm Leave a comment

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. 

October 15, 2008 at 7:53 pm 3 comments

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. 

October 14, 2008 at 7:24 pm 1 comment

Day Thirteen

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. 

October 14, 2008 at 4:01 am 4 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 Ten

I have given birth three times in completely different ways. 

The first time was the easiest.  I had an epidural.  The birth was pain-free.  Soft music played in the background, the doctor on call was a little miffed to be woke up in the early morning and took out her aggression on the chipped red polish on her nails.  I breathed deeply and pushed with all my might three or four times and we had our girl. 

The first six months of Elaina’s life she cried seven hours a day and I sat on the couch in our little Chicago apartment and waited for Sergei to come home from work, beside myself, convinced I was the only woman in the history of mankind who did not possess an innate mothering intuition.      

Zoya’s birth was long and painful.  I let a friend talk me into a natural water birth and the pain was like none I had experienced before or since.  I lugged my huge body out of the tub, down the hallway and back to my hospital bed in the hopes for some last minute drugs, a towel draped over my shoulders. 

Only Zoya could not wait.  She shot out of me while I stood next to the hospital bed, one leg hiked up on the mattress.  She was caught like a football by my mid-wife, her robust cry filled the whole hospital floor.  I fell into bed, oblivious of new life, a black haired, swollen little girl.  My second daughter. 

They say that as soon as a woman bares her child, she forgets the pain and struggle of the labor.  Because she gives birth.  She actually delivers a life.  I have given birth three times.  But the last time, I feel like I didn’t actually give birth.  I think it was taken from me.  I do not remember the third birth experience. 

I have to make up the first few moments of my third daughter’s life. 

And I imagine silence. 

I imagine the baby, blue and tiny, doctors scurrying around the room, hooking her up to monitors and beepers, sticking a breathing tube in her nose.  No cries, no tears of joy and laughter from the proud parents, no welcome and congratulations from the doctors and nurses.  No inquiries of her name. 

I imagine a pause, doctors noticing that beside her struggle for life that she showed some outward markers of Down syndrome.

I imagine pity.   

I imagine professionalism kicking in and the doctors jumping to the task of saving my child’s life.   

I have no memory of remarkable joy when she came into the world.  I don’t get to have those memories because they do not exist.  In those first few moments of living, in her struggle, did she wonder where her parents were?  Did the doctors treat her with any love or tenderness as they slowly pumped life back into her?    

October 10, 2008 at 9:11 pm Leave a comment

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