It’s been seven years, and I can’t believe I’m only now
sitting down to do this. I’m not even sure where to start, and when I think
maybe I don’t need to, I find myself unexpectedly overcome with emotions when
thinking about Son’s birth. Not even about his birth, but the events leading up
to and following as well. Maybe following the birth even more so because it’s
been a journey, and we’re still on that journey. I have Kelle Hampton’s book, Bloom,
waiting to be downloaded to my Kindle, and I’ve suddenly felt the urge to put
my story and my feelings down on paper before I read her memoir. I guess I
don’t want to be influenced by her writing and by her experience. Or maybe I’m
just avoiding reading her book because I’m afraid of the emotions pent up
within me that I’ll have to face. Regardless, I’m here now, and I’m writing my
story.
I think that this story begins when I was visiting Russia
and about five months pregnant. I was traveling with a friend, and we were
meeting our husbands, who had already been in Russia for a couple of weeks. We
visited many holy places – churches, monasteries, istochniki (translated to
“source,” but basically pools of water (lakes, ponds) that are considered
blessed). Each miraculous icon I venerated, each holy place I visited, I said a
special prayer for my unborn child. “There can be nothing wrong with this
baby,” I thought. “With all these blessings we’re receiving, this child can be
no less than perfect.”
When I finally went into labor, I was surrounded by my
husband and two caring friends acting as doulas. One of my friends, Aga, was a
nurse on the maternity ward at the hospital where I gave birth. The midwives
pretty much gave me over to her care, and came to check up on my progress once
in a while. As the labor progressed, she was there as a support, yet did not
push any one method on me. She gave me choices as to how to handle my
contractions, and always maintained an aura of peace.
 |
| Left- Aga, Right-Masha.I was obviously not suffering much yet! |
|
My labor was very unique in that my contractions were very
slow, and I had a lot of time in between them. The other friend who was with me
hinted at pitocin or breaking the amniotic sac, but Agniezka and the midwife
advised to let my body lead the way. I didn’t know this then, but the midwife
already sensed that something was amiss. I spent a lot of time in the Jacuzzi,
and again, I didn’t know this then, but Son’s heartbeat was very low. Oh, I
heard them talking about it – 94, 93, 96, but it was just a number to me. Now
that I’ve given birth two more times, it frightens me, because I now know the
average is between 120-150. Ignorance is
bliss, it turns out.
When I was almost fully dilated, my friend asked me whether
I would like to try to give birth in water, and I decided to give it a try. Pushing.
I have to say, pushing was not as much
of an effort. I don’t know if it was adrenaline, or his small size, but pushing
him out was not a bad experience for me. I don’t want to say it was fun. It was
definitely not fun. But it felt productive to me – real work, as opposed to
dealing with the pain of contractions. After pushing for a long time, I
remember hearing, there’s the head! and being offered to touch it. Of course,
in my mind, I thought it would be the
whole
head, and imagine my disappointment when it was only a small
patch of his head! Finally, after over
an hour of pushing, I remember hearing my friend cry – the amniotic sac is
still intact! Son broke it with his shoulder as he was sliding out, and I
caught him underwater with my arms, and lifted him up to my stomach. I remember
hearing Aga proclaim that he was born lucky, since the amniotic sac was still
intact. I was privileged to be the first to see the sex of my child, and to
announce it to Husband and the world. He was 6 lbs 4 oz, and his umbilical cord
was unnaturally thin. My sister had been waiting outside the birthing room from
the time I had started pushing, and since she was relatively young, I hadn’t
allowed her in the room for that part because I didn’t want to gross her out.
How naïve of me, because I allowed her to come in right after Son was born, and
she got to witness the birth of the placenta! You can’t get grosser than that!
 |
| Just out of the tub, looking at Papa |
 |
| my sister, Kypa's Godmother |
Oh, the high of giving birth and having that baby in your
arms! And oh, the wonderful naïveté of being first-time parents and knowing
absolutely nothing.
Did it seem strange
to me that no one came to wash the baby? Maybe fleetingly. I chalked it up to
the considerate staff giving new parents time to bond with the baby.
It was a long time before anyone came in, and
I wondered when they would come to wash him.
Note:
I found out years later that Aga could not bring herself to come into the room for
that time, because Son had been identified as an “FLK” – funny looking kid,
which meant a child with questionable appearances that could be indicative of
an issue. I guess everyone involved has their own grief to bear. Did it
seem strange to me that my baby wouldn’t latch on to my breast?
 |
| attempting to nurse |
Not really. I
figured it just takes time. In the time we were waiting for whatever was going
to be next (like washing of the baby, and transfer to a “real” room – lots of
babies being born meant that I labored in the triage room), we took a million
pictures, made a million phone calls, and picked a name for our son – Kyprian.
When Aga came in to help us with Kyprian, she was all smiles
and loving to the baby. This wonderful nurse friend of mine spent all night
helping me labor and give birth, then went on to work a full day shift with
only about an hour’s worth of nap under her belt. She finally got us
transferred to a beautiful room, where we settled in. Things get a little fuzzy
at this point, and I can only share those poignant memories that stick out as
reminders of where we once were.
******************************
Because I had tested positive for Strep-B, and had had
antibiotics during labor, they ran blood work on Kyprian, which showed a high
white blood cell count, so he had to have antibiotics too.
Our poor little guy, so tiny to begin with,
was fitted with an IV, and his arm was wrapped up and stabilized. Because of
this, it was difficult to hold him or pick him up whenever we wanted to.
 |
| in the comfy hand-woven hat my mother bought in the lobby on day 2 |
********************************
My parents drove three hours to get a glimpse of their first
grandchild. I actually don’t remember my
dad being there as much as my mom. I think he read the prayers after birth over
Kyprian and me.
******************************
When I was finally situated in
my room, I was still on my adrenaline rush from the birth, and my voice during phone
calls was euphoric and full of humor. “He
looks like a little turtle.” “He has
hobbit feet.” “He looks like Yoda.” Those on the receiving end of these comments
may have been a little shocked, or felt a little bit uncomfortable, but I was
telling the truth. At the time, I found a lot of humor in his physical
appearance. He really did look like a turtle! And his feet were huge compared
to the rest of his body. Although he was tiny and only three days overdue, he resembled
an overdue baby in that his finger nails were really long, and his skin was
peeling. He was the most beautiful thing
in the world.
******************************
Eugene, my mother, my sister and
I were hovering over Kyprian’s little crib that first day, basking in the glory
of the firstborn son/firstborn grandchild/firstborn nephew when the words came
out of mouth. I really had no filter; maybe it was the hormones. “
He looks like an old man with Down
syndrome.” My mother was horrified
that I could say such a thing about my own son. “
Well, he does” I answered.
 |
| our little prince |
******************************
The hospital I gave birth in
doesn’t have a nursery, so all babies room in with their mothers. I remember
slanty-eyed Kypa lying in his little bed next to me. I figure it was the first
night that I sent him out to the nurse’s station to get a little bit of
sleep….I was just so tired. I had looked in horror at my mom when she suggested
I let the nurses take him so I could sleep. What?! Let someone else watch my
baby?! Let him out of my sight?! Well, those thoughts went out the window
that night, for reasons I no
longer remember, but I guess I was pretty exhausted. I sent him out to the
nurse’s station to get a bit of sleep, but he was brought back to me relatively
soon to attempt to nurse again.
***************************************
We’re going to take your son for an EKG. Okay.
I figured this was routine.
***************************************
EKG came back normal. -Ok, thanks.
******************************
“How is the Little Man?” “Oh, Little Man, you are so cute!” “Come on,
Little Man, let’s change your diaper” There is one nurse in particular that
I remember calling Kyprian “Little Man,”
even though others did too.
Although I had been poking fun at Kyprian’s looks since he’d been born,
this cut me to the core. I was so offended that this woman also saw the old man
characteristics of his features and was so obviously pointing them out. Later I
found out that all the nurses call all the baby boys “Little Man.” I was still
offended, though.
***************************************
The nurses were so kind. They came to change Kyprian’s diapers. I didn’t
even have to ask. Or rather, I didn’t know that I should ask, or that actually,
I was supposed to be doing it myself. That I only found out two and half years
later, when my daughter was born. After two days of being at the hospital with
her, and paging the nurse’s station to help me change her diaper every time she
soiled it, a nurse told me, we can’t let you leave until we see you change a diaper.
What?! I had no idea I was even allowed to change her diaper!
***************************************
As I was excitedly talking to my best friend, Natasha, a group of
medical staff walked into my room. The person in charge ignored me completely,
and bent over Kyprian’s bassinet. She turned to the team of what I assumed to
be medical students and started pointing out Kyprian’s cute features. I figured
this must be the pediatrician come to examine the baby, so I hurriedly hung up
the phone so I could talk to the pediatrician. Even though I was no longer on
the phone, the pediatrician continued ignoring me, so I said Hi, are you the pediatrician? At that
point, she finally introduced herself, but did not say why she was there.
(Apparently to showcase a real, live flesh-and-blood infant with Down syndrome
to her students.)
***************************************
My poor little guy kept
shivering. He just couldn’t get warm enough. I rang the nurse in and told them
that Kyprian always seemed cold. Kyprian was carted away. I didn’t see him for
a long time. Finally, I couldn’t wait any longer, and I dragged myself up off
the bed and slowly walked down the hall, looking for my baby. As I rounded the
corner, I saw Kyprian lying on a large, square table in just a diaper. Behind
the table stood a group of three nurses who seemed to be arguing and I could
only hear snippets of conversation as I approached. “…if he’s going to go home…what do you suggest…he needs…” As I got
closer, one of them looked up, saw me, and quickly tried to hush the others “…the mother’s coming…”
Un-confrontational as I am, I pretended I didn’t hear anything; I smiled and
asked, “When can I have my baby back?”
I found out two things: Kyprian was having a hard time maintaining his body
temperature, and he was jaundiced. The big square table he was lying on had a
big heat lamp above him, with a special UV lamp to help with the jaundice. It
looked like I wasn’t getting my baby back any time soon.
***************************************
Hours went
by. My friend, Aga came to visit, and was surprised that Kyprian wasn’t in the
room with me. I told her about his jaundice issue, his inability to maintain
his temperature, and that the nurses had told me he needed to stay in the room
down the hall. She said that was ridiculous and asked if I wanted him in my
room with me. Of course, I did, and she left saying she would soon return.
Thanks to Aga, Kyprian was finally returned to me. He was in his little
bassinet on wheels, and we were given a portable UV lamp to warm him and help
clear the jaundice. The nurses advised not to take him out of his bassinet too
often, but Aga kept encouraging me to give him skin-on-skin contact. I admit that
I did not follow her advice as often as I should have because I was too scared
of harming him.
***************************************
The amount of icons placed along the wall of Kyprian’s bassinet grew.
***************************************
On the second morning, the same unfriendly pediatrician returned along
with her team of students. I was alone. Eugene was in his last semester at SUNY
Institue of Technology and couldn’t miss class. My mother had not yet arrived
after spending the night at our apartment. My sister had already returned to
school near Albany. So the pediatrician walks in with her entourage, and I
remember everyone sitting in a semi-circle. There could not have been enough
chairs for everyone, so most of them had to have been standing. We’d like to do some chromosomal testing are
the words I most remember. In my heart I already knew, (ever since my “rude”
comment the day before about the old man with Down syndrome there was an
unsettled feeling within me), but I wanted to hear them say the words, so I
asked, what are you testing for? The
pediatrician listed two genetic disorders, but I stopped listening after the
first two words: Down syndrome. Then
a female, I guess medical student (because I don’t remember the pediatrician
explaining who the rest of the team was), said they may also test for another
disorder, but it ran in Jews. Are you
Jewish? I looked at the big cross on my nightstand, and the plethora of
icons bearing the image of the Virgin Mary around me, and answered No. She shrugged and said, I didn’t
think so. The pediatrician stated that the chromosomal testing was a precaution
because Kyprian did not have all the markers of a baby with Down syndrome. So there was hope. But I still knew.
Deep in my heart, I knew. Why am I alone to
hear this? And why are all these other morons here while this news is delivered
to me? I tried to keep my face expressionless while they all stood around
me, most of the team trying not to meet my eyes. I nodded and said I had no
questions as my entire being shattered inside.
After the group of physicians left, I picked up my little Nokia cell
phone and called three people. Two were unavailable, but I was able to reach my
cousin, Tina. Tina is younger than me, and was in college at the time. She was
so excited to hear from me, and I’m sure I gave her the shock of her life when
I burst into tears and told her that the doctors thought Kyprian had Down
syndrome. To her credit, even though I was probably one of the first of her
friends to have a baby, Tina was a pillar of strength for me. She was not horrified,
and she offered only positive thoughts. Once I had that first cry, I didn’t cry
again when telling people what may lie ahead of us. Besides, there was still hope that this wasn’t true.
Soon after the phone call, my mother appeared in the doorway. She had
bought Kyprian the most adorable little blue knitted hat, which we immediately
put on his head to keep him extra warm. She sat with me and said Remember what you said last night about
Kyprian? Well, I went on the Internet last night and….I have to tell you
that my mom must have been *really* curious to even consider going on the
Internet at our apartment. We had a dial-up modem connection if anyone even
remembers what that is anymore!...I cut her off with a gruff I already know. The doctor came this morning
to say they want to do chromosomal testing. I did NOT want to lose it in
front of my mother. I think I did pretty well.
***************************************
When Eugene finally came, I don’t remember telling him the news. I
remember him going out into the hall to phone our spiritual father,
Archimandrite (now Bishop) George Schaefer. Eugene never showed any negative
emotion. To this day, he has not shed a tear over anything pertaining to
Kyprian’s diagnosis. The only thing that overflowed out of him was love. Love
and comfort and unconditional acceptance.
All he said was This is my son, and I
love my son. Of course, I loved my son too. But I wanted things to be
different. I wanted things to be the way I imagined my perfect life would be.
***************************************
When Fr. George came to visit, he looked over Kyprian in his bassinett
and blessed him. My mother wanted to know if we should baptize him right away.
He smiled his little smile and said, everything
will be okay. My mother latched on to those words –Maybe he knows something we don’t, she whispered. Maybe he doesn’t really have Down syndrome.
But I shooed those words away. No Mama,
he is just saying that he’s perfect the way he is. Even though in my heart
of hearts I kept that flame of hope alive of a misdiagnosis, I outwardly
acknowledged Kyprian’s diagnosis.
***************************************
I’m a researcher at heart. If I don’t know something, I look it up. I
definitely didn’t know anything about babies, so I read a lot about them while
I was pregnant. In my reading, I was advised to provide a lot of skin-on-skin
contact and to encourage the baby nurse as soon as possible after birth. I had
read that it takes a little while for the baby to catch on sometimes, so when
Kypa didn’t latch on right away, I wasn’t really worried. Actually, I’m not
sure I even thought he didn’t latch on. I remember trying to force my
breast in his mouth a few times. I thought things were going well…until they
weren’t. That first night, the nurse came in and roughly shoved Kypa onto my
breast. Ouch, that kind of hurt….hope Kypa wasn’t traumatized by that!
That didn’t work, so she gave me a nipple shield, which I tried using, but it
seemed to me that he kept choking on it. Why does he keep gagging every time
the shield is in his mouth?
***************************************
Since
Kyprian still wasn’t latching on, I was attached to an industrial breast pump.
My friend, Anne, came to visit me on a break from work to find me bent over
like an old lady trying to catch every bit of colostrum being squeezed out of
my boobs.
***************************************
Kyprian
couldn’t go home if he wasn’t nursing or taking a bottle. The nurse brought in
a bottle of formula since my milk had yet to come in, and everyone took turns
trying to feed Kyprian the bottle. The nurse tried, and Kyprian did not latch
on. Eugene tried, and Kyprian did not latch on. My mother tried, and Kyprian
did not latch on. I sat back, watching everyone take a turn, and finally I
said, can I have a turn? I cuddled
Kyprian into the crook of my arm and gently pressed the nipple to his mouth. To
everyone’s surprise, Kyprian opened his mouth and started sucking. My chest
puffed out in motherly pride and my eyes filled with tears – he knew who his
Mama was, and he wanted to be fed by his Mama. I was good for something.
***************************************
The second
night, a young night nurse came in and introduced herself to me. Her name was
Renee and she told me that she has a daughter with Down syndrome. Why is she telling me this? There is still hope. It was the middle of
night – she worked the night shift so she could be home with her daughter
during the day. She said she’d come back to give me a packet she wanted me to
have….It was around 2 am when she returned. The lights were low, and we spoke
quietly. She asked me how I was doing, and I mentioned to her that Kyprian was
not able to nurse, that he seemed to be choking on the nipple shield. After
watching Kyprian try to nurse, she said she thought that maybe the nipple
shield was too large, and went to get another one. In the dark room, while all
around us slept, I applied the new nipple shield and lifted Kyprian to my
breast. Tears flowed down my face and I choked on sobs as Kyprian finally
latched on and sucked efficiently. Renee kept insisting that her participation
was no big deal when I could not stop thanking her, but she was wrong. I will
never forget Renee, not for sharing the world of Down syndrome, but for giving
me a sense of normalcy in her gift of a simple breast shield. In a world in
which the future was so unsure, perhaps even bleak, and different from everyone
else’s, I was finally on common ground. Everyone in my community breastfed, and
now I could join their forces.
Renee left
me with a red folder that held information about a Down syndrome support group in
the area and other typical handouts people receive as new parents of a child
with Down syndrome. She also gave me a book called _______________. I
ignored all of it. I shut my mind to that red folder and pushed it aside on my
sliding table on wheels. After all, there was still hope…but if there
was hope, why was I sitting here with this folder? Still, if I didn’t read it,
maybe it would never pertain to me…
***************************************
When I was
pregnant, my mother kept talking about this huge christening she wanted us to
have. We lived three hours from my home parish, and my mother dreamed of us
bringing our newborn baby there for its baptism. I was strongly against it – I
didn’t believe in driving three hours in a car with an un-baptized infant. We
discussed this on a few occasions, and we hadn’t come to a compromise. I
remember saying to Eugene after Kyprian was born, well, one good thing about this is that we can baptize Kyprian sooner,
and have a smaller baptism where we want it. We sent out invites to the
whole family, of course, but few could make it at such short notice. Kyprian
was baptized at 14 days. The weekend he was baptized, we travelled four hours
to a wedding. I was so happy to have my newborn son with us, and I was excited
to show him off. I was not expecting the outpouring of support and pity,
however. News travels fast in the Russian community. People’s smiles were extra
big and their hugs uncomfortably long. That was another thing. I didn’t want
people’s commiseration. I smiled to the
world. And truly, if I just looked at my son, and basked his glory, I was
happy. I truly was. I could ignore all that other stuff, and just be with my baby. I didn’t need those
people bringing me down. I had my baby, and I just wanted to be happy with him
without any reminders of what might be.
We waited
and waited for the results of the chromosomal testing. If I remember correctly,
it was over two weeks. I remember the phone call from our pediatrician, Dr.
Margaret Young - can you come in to see
me, she asked. Deep inside, I knew, if she’s asking us to come in to see
her, the news cannot be good. But the mind is an interesting thing. Until those
words are spoken, you can convince your brain to think otherwise. So we put
Kyprian in the car and drove the 20 minutes to Cooperstown. I don’t remember
what we talked about on the way. We may have played the “what if” game we loved
to play. What if she wants to tell us
that he doesn’t have Down syndrome? What if there’s something else wrong? I
do remember it being a pretty autumn day.
I remember
sitting in the patient room, our backs to the windows, waiting for Dr. Young to
come in. When she came in, I was holding Kypa; I may have been nursing him. I’m
sure Dr. Young didn’t walk in and say the test came back positive, but I
honestly don’t remember anything but, the
test results came back, and Kypa does have Down syndrome. He has the most
common version trisomy 21, not the mosaic version, and I remember bringing
Kypa close into a tighter hold, hugging him to me, breathing in his baby smell and saying – I’m sorry, but I’m going to cry now. The
worst had happened, and the dam was broken. I proceeded to cry and sob, and I
could not stop. I remember saying not to misunderstand me, I love my son, but I need to cry, and the kind face of Dr. Young
looking sympathetically and understandingly at me. The worst, though, was when
I attempted to get control of myself, and I went to the bathroom to wash my
face. Do you know what it feels like to be that person walking the halls of a
pediatrician’s office – the place where only happy things are supposed to
happen – and your eyes are swollen and your face is blotchy from tears? Every
person I passed in the hallway looked away as fast as they could. No one wants
to even think about what a person is crying about at the pediatrician’s office.
It can never be good. I walked into the bathroom and splashed water on my face
as I sobbed. I looked at my swollen face in the mirror, and thought to myself, what is going to happen now? I love my son,
but I can’t deal with this.
I walked back to my waiting husband (who has not shed a tear)
and my waiting son. I apologized to Dr. Young, who said I have nothing to
apologize for. I’m sure we talked about our next steps, but I only remember
getting in the car, and as we drove down the tree-lined street, I turned to
Eugene and I said, I’m really sorry, but
I have to cry this out. I love Kypa, but I still need to cry about this. He
said that it was okay, but I don’t think he really knew what he was agreeing
to, because I proceeded to cry for the next three days.
I was lying
on the bed in the dark, huddled in a fetal position around my pillow. Silent
tears ran down my face as I suffered in another bout of self pity of the
unknown and grief of a plan that wasn't to be. My sister came into the room and asked me what was wrong. Nothing, I answered. Obviously not nothing if you’re crying.
Suddenly, I couldn’t hold it in any longer, and I snapped, why me?! What did I do wrong, what am I being punished for?! And my
sister responded with words that I will never forget – maybe it’s not about you. Maybe it’s about bringing the people around
you closer to God. And that is the truth. Our world is a community, and Kypa has
shaped not only our family, but everyone who interacts with him. He is a jewel,
glistening in a sun baked desert. He brings so much joy to our lives. He
softens the hard edges of everyone who knows him. We’ve adapted well to our new
normal, and we haven’t looked back. Well, maybe that's an exaggeration. I still have my hard days, of course. Sometimes I find myself wishing we could go back to the days where the expectations weren't so high and the difference wasn't so obvious. I wish I could go back to a more carefree outlook on the whole thing. I'm sure it will come again, because the rough patches come in waves. We're in the tumult of a breaking wave right now, but I know it will clear up in the future and we will again be sailing on a sea of smoothness, or at least some calmer waves.
 |
| Left- Kypa, captain of his 8th birthday pirate party, October 2012 |
I tried to make a green juice without a recipe...
