Down the Road that Leads Upward
(by Genia Lackey)
Chapter One
“Oh, look Sharon is pregnant again,”—Gina said out loud, though no-one was around to hear her. She stumbled upon her friend’s blog page showing a photo that revealed the advanced stage of Sharon’s pregnancy. “That must be number seven for them”,--Gina thought, smiling down as she gently caressed her round belly. “I guess they have been keeping up,”—Gina could hardly believe that Sharon was sticking to her plan of having eight children. Sharon was Gina’s hero for many reasons, but in this particular case, for being such a sport. Pregnant Gina looked and felt like a helium filled balloon, full and round but light on her feet, with only occasional mild discomforts. Pregnant Sharon spent nine months “heavy with child” weighted down to bed and burdened with morning sickness lasting from three in the morning till two fifty at night!
Gina returned to her needle and quilt. She was due in about a month and really wanted to finish the baby blanket before his or her arrival. As always she was hoping for “her”, but the blanket was turning out a bit boyish and she started dreading having to pick a boys name again. With four boys, she felt they had already used-up all the good ones. There are only a few that sound equally nice in the three languages spoken in their family -English, Russian and German.
Sharon and “the Man” (as she referred to her husband on the blog) sure would have liked having another boy, as they had only one so far. Nevertheless, so many girls gave Sharon the chance to outdo herself in making the cutest girly knits. Her Wool and Chocolate blog had no entries on cakes or cookies, as the name might insinuate. Knitting was as sweet as chocolate for Sharon and any time she was not home schooling her kids, cooking or washing, she spent knitting or spinning.
Gina and Sharon had a lot in common. They shared their views on nutrition; organic only, no additives, no partially hydrogenated oils, no glucose syrups, aspartame or fluoride. Both women used cloth diapers on their babies and spared them immunizations. Neither of the women did any prenatal screenings; they loved their babies, boy or girl. Pink or blue could be decided after the birth. And besides, they both liked the element of surprise.
***
Gina, anxious to check on Sharon’s current status, came up to the computer to find the space occupied by her husband. “Hey Gina, listen to this song,” Rob said, taking off a set of headphones and handing them to her. He was listening to a new song that his band had sent him for adding his vocal lines.
Gina listened for a while. “Sounds cool, do I get a part?”—Gina had studied opera singing at the Vienna conservatory and even though Rob was in a metal band, there usually was a song on every album on which he would ask her to sing the choir. She was still patiently hoping for a part with actual words, instead of just “oh”s and “ah”s.
Gina took off the headphones “I need to use the computer now. I want check on Sharon. I want to find out if she’s had her baby yet.”
“But I am still…” --Rob tried to protest, reaching for his headphones.
”This seat is reserved for the pregnant and the handicapped,”—she interrupted,--“I don’t see a neck brace on you,” -- outright kicking her husband out of the computer chair.
As she took seat in front of the screen, Rob stood behind her and began lightly massaging her shoulders. Gina went straight to the blog page. Sharon‘s photo always popped up on the right hand side. She must have taken that picture herself, holding the camera in her right hand above the head. She was smiling, looking up straight into the camera, squinting a bit, because she had to take off her square dark framed glasses. Her hair had grown long, probably more out of neglect rather than fashion. For the same reason she was not wearing any make up. Gina admired Sharon‘s casualness with which she selected her internet pictures. Gina was quite vain about what she posted. Just like Sissi she wanted the world to remember her young and beautiful; at least younger and more beautiful than she really was. Still smiling at the photo, her attention was drawn to a post named The Worst Week of my Life which Rob had been reading over her shoulder, which she as well, began to read.
“Yesterday I shared my birth story. Such a sweet, peaceful, and quick birth it was that brought The Blessing into our lives. For almost two whole days we basked in the afterglow of that birth, adoring our new little baby, beginning to understand what an extra chromosome meant to us. And then it happened. My world threatened to collapse on top of me.
I have been considering exactly what to write concerning this nightmare that we had entered into. Words fail me as I try to remember how it all happened. Do I just list the events in chronological order, separating out the emotion from fact in an attempt to accurately tell a story? Or do I try to convey the despair, terror, and desperation that haunted me every second of that week? Is any of that even possible? And so I beg your indulgence as I muddle my way through my tale, knowing that words can never really express accurately the things I am trying to tell you.
The diaper was filled with blood. Not a little streak …“This is as far as Gina got when she was interrupted by Rob who was quicker to read.
“You should not be reading this, honey. You have a baby due in two weeks and I don’t think it is good for you to invest yourself in this emotionally.”
“Ok, then you finish it and tell me what happened,”--her face still gleamed with a slight hint of the smile she had from Sharon’s picture, as it began to fade into a dropped jaw, furrowed brow expression of complete inability to comprehend what she had just read. She really appreciated her husband looking out for her at that moment.
“Why don’t you go work on the quilt if you want to finish it in time”,--Rob said as he took the chair and continued reading. Gina quoted Scarlet O’Hara to herself, “I won’t think about it today”, -- and walked away counting her blessings.
Chapter Two
Gina was tossing and turning in bed. At that stage of pregnancy it was almost impossible to lie in bed comfortably. Only this time it was not just the inconvenience of the unproportionately huge belly. There was some pulling and cramping in combination with back pinches. Gina counted--twelve days before due date. She returned to thinking about Sharon and her baby. Rob had told her that everything ended well and that the baby was safe and sound and already at home. However, the image of that diaper filled with blood kept coming back. Was that somehow connected to the chromosomal augmentation? She remembered the exact words: “what an extra chromosome meant to us.” To the rest of the world it means Down syndrome. Gina had worked with such kids before and knew that having one was not necessarily a sad thing. It also seemed like Sharon and the family were taking it well. Still, Gina was not sure what the appropriate thing to say would be. What would be the appropriate thing to even feel? “I guess, no one dreams of having Down syndrome babies,” –she decided that a touch of pity would be appropriate. She started a bath, like she always did when she had to check the seriousness of the contractions. These ones proved to be real but she decided to try to get some more sleep and went back to bed. She managed to snooze a bit. A couple hours later she opened her eyes, shook off the sleep and decided it was time to run the bath. Only Gina’s firstborn was delivered in a hospital, the rest of the children were born at home in all kinds of combinations: with and without midwifes, on a mattress and in water. She swore on the latter, but wanted to do something different this time. She had even looked up “unassisted birth” on you-tube and was determined to do just that—have her baby entirely alone.
Rob heard the bath water running again: “Are you OK? Do you need anything?”
She told him just to stay in bed for now, and went to make some bath tea. The sun was not up yet, and it was too chilly outside to search for garden herbs, so she searched the kitchen for dried lavender and roses and whatever herbs she could find and put them into a big pot of boiling water. Rob knew that at this point she is better off left alone; she would call him if she needed his help. He appreciated her self- sufficiency and sovereignty in child bearing, not to mention the extra sleep this would afford him. Besides, he did not like feeling like a fifth wheel—a sensation unavoidable for any man in presence of a birth giving woman. Gina poured the tea into the deep bath. She had a flash back of walking into this bathroom during the first tour of the house and thinking how nice it would be to deliver a baby in this gorgeous room with faux marble tiles. She felt grateful that they were able to get this wonderful place two years ago which she coveted to christen with at least one more baby. She sat the empty pan on the window sill. From here she could see the stork nest. Storks came every year, previous summer they were able to observe baby storks from hatching to learning to fly. The storks came back in the spring, only this year none of the eggs hatched, probably drowned in the heavy rains of the early summer. Gina stepped into the tub. In an attempt to avoid thinking about bad omens she focused on being fortunate not to depend on the weather for her babies to survive. She immersed into the water which immediately rose to fill the sitting corner of the Jacuzzi tub. The top of the belly with a popped out belly button was distorted by a contraction. The warm water engulfed her sagging limp body. The sent of lavender dominated all the other herbs. If only she could take a half and hour time out and get some more rest! She relaxed her jaw, her mouth half opened. “As above so below”,--she visualized opening gates, unfolding rose buds and dilating cervixes. She concentrated on her breathing sending the air all the way down to her lower back. Between the contractions which were now coming about every five minutes she was able to doze off.
A couple of hours later little Annie woke up and asked for her morning cocoa. Rob got up. Interpreting the moans and breathing that he heard on his way to the kitchen he presumed that he would not be going back to sleep. “Should I call the midwife?” –he asked on the way back down the hall toward the bathroom. They both new she would not make it there on time, but this had been Gina’s plan to begin with.
“Sure, go ahead,”-- she was expecting to enter the second, most unpleasant stage of birthing, but instead of the familiar painful contractions she got the urge to push. She did not think it could get any better than her labor with Annie, but obviously there was always room for improvement. After the third push it was over. She lifted a blue and very tiny baby out of the water. A pair of little dark pearls was staring past the mother’s face.
“Rob!”—the intensity of her holler surprised her. Having just gone through labor she did not expect to have any strength for a cough, let alone for such a shout.
“What can I do?”—thinking the birth was about to begin, Rob opened the bathroom door to help with the delivery. A waft of roses and lavender startled him for a moment. Right then he saw the little blue creature. “Oh my…” As he knelt down to take the tiny baby into his hands, he saw the umbilical cord wrapped around the neck. Twice, they realized as they unraveled it. The baby was completely limp and not breathing. “Breathe, baby, breathe!” Gina and Rob looked at each other helplessly at a loss for what to do. All three of them were holding their breath. “Come on baby, breathe, breathe,”—Rob gently pleaded. A faint cry finally came out. Two sighs of relief followed. Gina looked down and confused the navel part of the umbilical cord for another body part, so she was very surprised to hear Rob say that it was a girl. She got out of the water and sat down on the corner of the bathtub holding the tiny infant tight to her breasts. All babies look strange when they are just born. It takes some time, even if only a few seconds, to recognize them as your own, because they look somehow foreign, nothing like one might have expected. But this one looked plain alien. Gina kept staring at the baby’s eyes. Rob handed her a towel and left the room. He returned promptly with a camera in his hands already explaining to the future viewers the date and the occasion. He walked around to be able to get a good shot at the baby, he zoomed in and through the camera screen for the first time was able to take a close look at his baby girl.
“Does she look,” – he paused for a second, “downish?”—he continued not sure if he used the right word. Gina nodded. Now that her suspicion was confirmed her heart was frozen in shock. She felt neither sadness nor fear, neither remorse nor disappointment. How could one have any feelings about a parcel that got delivered to a wrong address? This is what was going on in her head, just a bunch of thoughts detached from any kind of emotion: “A mistake, that’s what it is. I am young and healthy, I had done no ultra sounds, and therefore this cannot be happening to me.” The fact that she was going on forty that summer thus putting her in the “risk group” had no relevance at that moment. She knew that Down syndrome was not a sickness which could have been caused by any events during pregnancy. She tried to go back to the day and the circumstances of the conception. She was pretty sure it took place on New Years which also happened to be her birthday. She was about to have a sense of guilt about being quite tipsy that night, but since guilt is a feeling, her numb heart did not allow for it. “Ok, we can deal with this, but how on earth am I going to tell my Mother? I swear I will stop talking to her if she only stammers about it being a result of me not baptizing my children.” Just then she remembered Sharon: “No way! What are the chances?!” Talking about kindred spirits: for both it was the seventh baby, both had a home water birth, both without midwifes, both ended up with girls (they even were given different variations of the same name), both had their babies in the same month—this alone should have sufficed for a plot of a book or a movie. But if one were to write in such a book that both babies also had Down syndrome! This was beyond mere coincidence! “Sharon never drinks, they are steadfast Christians”, thinking of her friend annihilated two possible reproaches at once. “That’s kind ‘a cool. Unbelievable, but cool”,--she actually felt honored to share such fate with her admired friend. Gina tried to imagine how Sharon would react to such news. At that moment she was feeling closer to her friend on the other side of the world she ever had. Deep down in her heart she already knew that a Down syndrome baby was not a curse but a blessing, not a punishment but a gift.
Rosa, the oldest of now three girls, cut the umbilical cord. The afterbirth was left in the drained bathtub for the midwife to examine and the whole family convened to the master bedroom. The kids were gently squabbling over who gets to hold the baby. Gina was considering if she should mention anything to the children. Rob went to google the characteristics of Down syndrome: “Maybe her eyes were just puffy from the birth…” On the chart of common responses to a traumatic event, he was currently in denial. She was entering the mourning stage, imagining how beautiful the baby’s eyes could have looked like. “Did all your babies look like this?”—the midwife asked. She had arrived an hour after the birth and was already finished with the routine check up of the new born. Her obvious attempt at being as delicate as possible catapulted Gina and Rob into the next stage -- confrontation. “Do you mean Trisomy 21?”—Gina used the medical term to show she had everything under control.
And she did. She had already learned to accept life’s challenges as opportunities. It took her one night of crying over the eyes. It took her another couple of weeks to get over her speculations of how having a Down syndrome baby could reflect on her: “she should have stopped while she was ahead”, “would it take a sick baby for her to stop having kids?”
One month after the birth she was able to write the following baby announcement being completely sincere in each and every line:
When a new child is born, life never stays the same.
There are more worries, more challenges, but also more joy and a lot more love!
Mascha’s little extra (the third 21. chromosome) triples all these things:
The biggest worry is her congenital heart defect, which will be surgically fixed
The biggest challenge was overcoming our fears about the new and unknown situation
The biggest joy is recognizing Mascha as a gift and blessing
The biggest love fills our hearts
Life is never the same when a new child is born—life is better
With Mascha life is THE BEST!
There are more worries, more challenges, but also more joy and a lot more love!
Mascha’s little extra (the third 21. chromosome) triples all these things:
The biggest worry is her congenital heart defect, which will be surgically fixed
The biggest challenge was overcoming our fears about the new and unknown situation
The biggest joy is recognizing Mascha as a gift and blessing
The biggest love fills our hearts
Life is never the same when a new child is born—life is better
With Mascha life is THE BEST!
Nine months later she posted on Face book: “I never knew I wanted a baby with Down syndrome until I got one!”
