Saturday, December 21, 2013

Some more juicing adventures

I love beets!


Don't be afraid of the ginger. I read in many places that a little bit of ginger goes a long way,  but the amount (lying on top of the beets) I put in this juice wasn't enough.

I tried to make a green juice without a recipe...
Don't forget the laws of color: Orange and green make a brown. Think balanced. 

Wednesday, December 11, 2013

A Juicing Adventure

One bunch of cilantro
1 cup of sinach
2 leaves of kale
2 wedges pineapple
1/2 a lime

I finally decided what to buy with a gift card I received at work over the summer: a Breville fountain plus juicer. Thank you cyber monday for $100 off - now let the fun begin!
Recipe credit to the *free* kindle book,  Breville Health Full Life:

Sunday, May 26, 2013

"Fishe Water"

Daughter came home with a mothers day poster she made for me at school. I was pretty excited until I read the second item on the list, which was supposed to be about me.

Fishe water?! Why is fishy water on the list to describe me?! Daughter: oh, that's us swimming at the beach.
Yup.  It's always interesting around here. :)

Monday, April 15, 2013

Reading Corner: The War of the Wooden Soldiers

I bought a 1933 edition of a book called The War of the Wooden Soldiers on eBay. It caught my eye because Baby is obsessed with soldiers and knights and pirates. It is difficult to interest him in books; the same books about animals that interested Son and Daughter don't really light the fire for Baby. Part of me felt guilty; perhaps it's because I don't get to read to him as often as I read to the others. Perhaps it's because when I do read, I read something at the level and interest of the older children. I realized it was just a matter of interest when, one night, I grabbed a book on ancient castles (for a much older audience of 8-11) and Baby sat riveted through the entire time I sat reading excerpts from the book. I hoped that Baby would enjoy this eBay find, and boy, was I right! I had to read the book twice in a row, then the kids took it upstairs and Manya read it one more time before bed. I love how the books of that time we written at two different levels. More wordy for the advanced reader on one side, and a short sentence with a nice illustration on the other for the beginning or non-reader.
Note: this was written back in April, and the book is just as popular now as it was then.

Friday, April 5, 2013

My Favorite Mispronunciations

There are always those favorite "baby words" our kids say, and although I try to model correct pronunciations of words as my kids are learning to talk, there are a few things that I don't correct because I just love them and I want to prolong the mistake as long as possible.

I *love* how Daughter says липчик instead of лифчик....I guess that would be something like "pra" instead of "bra."  Just the other day, I was driving Daughter and her friend, and somehow the conversation went to липчики (bras) and her friend asked her what that was. It was hilarious to listen to the random words floating up to me from the back row: ты знаеш....твои груди...майка.... (you know...your breasts...shirt) so funny. I also loved her Russian accent when she was starting to learn English.

I love how Baby says his name: АлЁса instead of Алёшa. It melts my heart every time. I love how he says Ипа instead of Кипа, and how his little tongue sticks out as he "ths" words.

World Down Syndrome Day (a few weeks late)

We celebrated World Down Syndrome Day at school on 3/21.The day was established in 2012 by the UN; last year we marked it with Kypa's photography being in a photo exhibit in New York City. This year, I thought it would be a good idea to celebrate this day at school with all of Kypa's friends. After talking to Kypa's teacher and asking if I could bring in a snack that day, the idea blew up into a grand event thanks to the typical behavior of Kypa's teacher going above and beyond expectations. He coordinated a $2 dress down day for the staff in order to raise funds for the Down Syndrome Advocacy Foundation, the whole school was encouraged to wear blue and yellow (the DS awareness colors), and the K-Kids (Kiwanis Club Kids) made posters to hang around the school to raise awareness.

I brought in awareness stickers for the whole school and my good friend (whose son has been in class with Kypa for two years) and I baked cupcakes decorated with yellow and blue frosting for the entire first grade to have as a snack during lunch as a way to make the day memorable for Kypa's classmates. I was also invited to participate in a "secret reader" type activity in the classroom to read a book and answer any questions the kids had. I was a bit nervous about the questions part, and I failed miserably at encouraging any questions because I was worried that I might get too choked up or something.

I picked a book called Common Threads: Celebrating Life with Down Syndrome. It's a compilation of pictures, stories and quotes about and by people with Down syndrome. Here's a picture of the cover and it can be purchased here:

I specifically chose stories that I felt would move the class. I chose the story about a "special tomato" (in a nutshell that tomatoes that look different still taste the same) that was contributed by a girl with Down syndrome and hilariously, when Ms. Miller (Kypa's regular ed teacher) said that we're all special tomatoes in our own way, one of the boys kept insisting that he was not a tomato. Five minutes later, as part of a different conversation, he broke in with - But I'm still not a special tomato.

I also chose pictures that portrayed friendship - specifically between typically developing children and a child with Down syndrome. What struck me the most was that Kypa's classmates were completely unimpressed! AS I showed thses pictures to his class, and as Ms. Miller asked the kids to share things they think are special about Kypa, they participated, but with an overwhelming vibe of - so what? One of Kypa's friends put it best - "You know, even if you have Down syndrome, you can still have a ton of friends." Another said - "You can still have fun if you have Down syndrome." For them, it was like, what's so special about Kypa and why do we have to give him all this attention? I got the feeling that all the kids were thinking - Kypa's Kypa, we love him, and there's nothing special about that.

They don't realize (and I wasn't about to break it to them) that their relationship is so special, and we adults apply our limitations and perceptions on our children, and are amazed when our children have flown way beyond them without us even knowing.  We were raised and formed by different stereotypes and beliefs, and we are amazed by the bonds we see being cultivated. They don't care though;  I left that classroom so uplifted, and I didn't tell the class that there are people who don't feel like them. There may come a day when they may need to make a choice; will they defend Kypa in middle school? Will they continue to see him as the friend he is now? I don't know, but I do know that we need to learn from them- our children - and strive for a time when the whole world feels like Kypa's classmates: that we all have our challenges, and Kypa is just another kid that happens to have challenges; until there's a time when we won't have to have an awareness day.

Wednesday, February 13, 2013

Happy Valentine's Day!

I love Valentine's Day. Now, before you start gagging, it's not because of all the lovey dovey stuff. Well, it is, but not in the romantic way.
One of my favorites childhood memories is of Valentine's Day. Coming downstairs into the kitchen to find a bag of treats at your seat. My mother reused the same bas every year (I wish I could be that organized), and there were always Russell Stover chocolate hearts that came in a tray. Another staple: red hots. This evening, as I was in the store buying candy for my kids, the cinnamony smell of red hots wafted over to me, and woooosh! I was back in the kitchen at parents house.
Tonight, I was on the phone with my mom as I prepared for our festivities. I was taping pencils to the kids' valentine cards for school, and my mother asked me - are you doing anything at home? I said - yup, and she replied - I love that you do that!
What? Of course I do it, and I do it because my mom raised me to. It was my mom's influence that helped form the meaning of Valentine's day for me. Valentine's Day has never been a romantic holiday for me. It has been a time to tell the people in your life that you love them. It's a family celebration of the love you feel for one another. It's a cozy holiday, filled with sweets and snuggle time, and then church in the evening, for the Entrance of The Lord Into the Temple. I have all of that to thank my mom for. Thanks, I love you, and you are a great mom!

Some shots from tonight's preparations:

Tuesday, February 5, 2013

Teaching Moments: Part Deux

Every night before we go to bed, we take Son and Daughter on one last bathroom run. I've read that in order to teach the kids to wake themselves, you have to make them do all the work (walk to the bathroom, pull up their pants, etc), so that's what we do. Son is actually pretty good with the night training; he would wake up dry regardless, but Daughter is having a more difficult time.
Last night, I came in to take her for the last run, and she had already wet the bed. It's a little frustrating to have to deal with when you're tired and worked a ten hour day and just want to go to bed, so I sternly told her to get out of bed and go to the bathroom and undress herself. As I'm stripping the bed, I hear her standing and crying right outside the bedroom door, so again, I yell to her to get undressed. She proceeds to wail and wail, and I'm thinking, this is a great teachable moment here. She will now realize that it's no fun to have to get up and get undressed in the middle of the night. This will probably prompt her to start trying to pay more attention to the need-to-pee feelings at night. She finally gets undressed (with moderate assistance from me) and I help her into her new pajamas, and I tuck her into bed. I snuggle up to her and kiss her soft cheek because I don't want to end this night with her still upset. In the morning, Daughter comes into our bedroom and asks - Mama, почему я одета в другой пижаме?! (Mama, why am I wearing a different pajama?) Doh!!! Looks like another fail in the Teachable Moment department!

Monday, February 4, 2013

Potty Training: Week One

Day 1:
Baby had three accidents. We used a timer set at 20 minutes. The 20 minutes started at every toilet use/accident.
Highlights of Baby screaming "Kaaaaaki" as he pooped his pants. He is not happy to have poop in his underwear or on his legs. Now he's scared to go #2. That will be the next hurdle.
Over the course of this week, we've evolved very nicely to not really using the timer.
Baby showed signs of "potty knowledge" as early as a little over a year. Needless to say, I was not ready to tackle that monster then, and I didn't want to torture Husband. However, a month or two ago, Baby started leaving the room to poop, and tell us when he peed in his diaper. We eased into the potty training thing. Every once in a while, we would put Baby on the toilet before bath time, or in the morning. The day he peed in the toilet (last week), the diaper came off, and it's not coming back (except at night, and long trips out, but then it will be a pull up).
And, by the way, Baby still refuses to use that little potty seat.

Sunday, January 27, 2013

A Different Kind of Birth

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

Saturday, January 26, 2013

Teaching Moments

For the last few months, we've had issues with Daughter eating lunch at school. Well...she just has eating issues. She is a snacker, and never wants a meal. And by snacker, I mean any unhealthy candy-like snack available. It's really a hassle, and, honestly, it's getting old. But I digress...
So lunch at school. Very often, Daughter comes home with a barely eaten sandwich. The other day, her sandwich was untouched. Husband asked her why she didn't eat her sandwich, and Daughter answered that today there was no time to eat lunch. It was recess right away. Obviously, the school is not going to start recess without allowing time for lunch, but Husband chose to let it go. A little while after, Daughter said she was hungry, so Husband sat her down with the sandwich and told her to eat it.
That night, as I was tucking Daughter into bed, I said to her, Маня, я слышала что сегодня не было времени в школе обевать, и что сразу был recess? (I heard that today there wasn't time to eat lunch and it was recess right away?) She looked at me with her big, blue eyes, and she slowly answered, "Да.......я наврала" (Yes.....I lied.)
I took this moment as a great opportunity for explaining how to apologize. I looked at Daughter very seriously, and it wasn't hard to make my voice sound sad. I told her how sad I was to hear that she lied to her father. I told her how upsetting it was to me to know that she would do such a thing. And then I said, I know this is a very hard thing to do, but you have to get out of bed right now and you have go tell Papa you are sorry that you lied to him. I said that I was sure that if she apologized, Papa would kiss her and hug her. As I was talking, Manya opened her mouth wide, stuck her little thumb in, and started to suck. (I should have taken that as my warning sign, but I missed it.) All the while, she watched me with her big, blue eyes and listened. I opened her blanket and I took her by the hand. I really thought it was going well! Then it started. "Я не хочу сказать прости!" To make a long story short, I ended up dragging her into the room where Husband was, and forcing her to stand in front of him. She kept crying that she didn't want to say anything, but finally, and I have no idea how I got her to do it, she wailed - Прости что я тебе наврала (I'm sorry I lied to you).  Over her wails and behind her, I'm signaling and mouthing to Husband - {Hug her and Kiss her} - because obviously with that kind of delivery, who would think that a hug and kiss is warranted? I decided to stick with my teaching moment, as I walked her back to bed, though, and I said - Saying sorry is one of the hardest things to do, but it's one of the nicest and best things that we can do, especially when we know that we've done something wrong. I walked out of the room, and caught eyes with Husband, who said - looks like I'm not the only one who has trouble with saying sorry. I guess it runs in the family! ....Perhaps my teaching moment wasn't a total failure with at least one audience....

Friday, January 25, 2013

Les Miserables

When I was a teenager, I was obsessed with musicals. In high school, we had a day called Enrichment Day. Every year, I picked to go to a musical on Broadway in New York City. Miss Saigon will forever be carved in my memory with the sight of a real helicopter coming down on stage. It may even have been the first theatrical production I ever cried at.
I  was a member of chorus and the Thespian Society (yes, my brother made fun of me with a play on words  for that one).  The soundtracks to Les Miserables and  Phantom of the Opera, as well as Miss Saigon could forever be heard coming from the stereo in my room, thanks to the public library system. I would borrow the records and record tapes of them before returning the records back to the library.
For my 18th birthday, my parents surprised me with tickets for the whole family to see Les Miserables. Unfortunately, the night before the show, my mother had a heart episode, and ended up in thehospital for observation, so my lucky father got to take us himself. I’m sure he was “thrilled.”
Most people know that Les Miserables, the musical, is based on a novel by Victor Hugo. I will admit to never having read the book. Yet. I’m pretty sure my father never read the book either. Although I knew every song,  my 18 year old, very young and naïve self did not understand the play. I will confess that during the show, I was embarrassed to think to myself – this wasn’t what I expected, and I may have been a little bit bored with it. I felt bad that my father had to sit through it, considering he really wasn’t into the whole musical thing.
Fast forward to today. I do believe I watched the 1998 movie production of Les Miserables, but it didn’t have much of an effect on me, especially if I’m not sure I watched it! This evening, I went to the movies by myself, to see the newest production of Les Miserables, directed by Tom Hooper.
I have never been so moved by a movie. I am being honest. I know this is embarrassing to admit, but halfway through the movie it was suddenly revealed to me that this story is classic Scripture. This story is about Pharisees and publicans, about judgment, forgiveness and redemption.  Many claim author Dostoevsky opened their hearts to God through books like Crime and Punishment and The Brothers Karamazov. My eyes have been opened by Victor Hugo.  It all makes sense to me now. I am shocked that I haven’t seen the glory of God in this story before now. I can’t put into words how I feel, but my Kindle is already open to the first pages of the novel, and I bid you all to take the time to do the same.  Looking at my life so far, I see the work of God so clearly. Perhaps I saw it before, but today I look with more forgiveness and less judgment and I feel my life has been changed. Lord Jesus Christ, Son of God, forgive me a sinner. As St. Basil the Great said (in a nutshell), sometimes it is beneficial to read “pagan” (worldly) materials so that we may see God more clearly.