A Click and St. Nick

There was a stretch of childhood years in which every Sunday morning my sisters and I would pile into our family’s green mini-van and make the half hour journey into town to St. Mary’s Ukrainian Catholic Church.  It was time for catechism.  We weren't terribly religious, but this had less to do with religion and more to do with tradition.

We would assemble in our church's basement which, after decades and decades of pirogi making, had absorbed the smell of butter and onions into its walls, its woodwork, its essence. 
 
But the familiarity of that smell was welcoming.  You knew exactly where you were in space and time, grounded in the presence of an aroma layered on by the past.  Our past. My sisters and I knew that our great-grandfather had carved the beautiful picture frame hanging by the stairs leading up to the vestibule.  The frame was adorned with an intricate pattern of leaves and vines; we could see our roots in this church.


The woman that taught our catechism class was the same woman that taught my mother and all of her brothers and sisters’ catechism classes.  She was the female figure of the male dominated church, and the remnants of the motherland's language still clung to her words.  Catechism would always begin with prayer - Our Father. Hail Mary.  I've heard stories from my aunts and uncles that back in her heyday she had a little heavier approach to the teachings of the church.  By the time our generation sat before her, she had softened - a little.

We spent a lot of time coloring, making chocolates, crafting, learning words in Ukrainian and above all else: singing.  Oh! And a very important thing to remember if you ever find yourself in a Uke catechism class:  If at any time the priest comes to visit, you stand up and say “Slava Isusu Christu.” To which he will respond “Slava Na Viki.”  I could never remember what it meant in English, but I did always remember to perform the ritual.  

Rituals are a cornerstone of the Uke church. I think that over half of my time spent in church was as part of a procession.  And a large portion of catechism was dedicated to rehearsal.  It is no secret that the Catholic mass is half devotion, half aerobics. There are certain times to sit, stand, kneel, walk, sit again.  So how do you train a group of kids to know when to do what?

With this:



A clicker.

A device that makes a metallic click when pressed, a sound that carried much meaning within those sacred walls.  This clicker was the same one she used when teaching previous generations, when our mothers and fathers were in our place in the processional line, with arms folded neatly over their chests, walking down the aisle one by one towards the altar, listening for the click to let them know when it was time to sit.  Her training worked too well.  You could see everyone fighting their muscle memory to not react to the sound.  

One of my favorite processions was dedicated to St. Nicholas.  The Holy Name Society had already been hard at work decorating the church for Christmas.  The children would wait downstairs until everyone was seated, then click walk down the aisle to take our place in the front row and click sit down.  We would participate in Mass, which was more Ukrainian than English on a holy day like this.  

We waited patiently click
stood click
left our pew click
arranged ourselves click
and sang

Ой хто хто Миколая любить

The song is the reason why I loved this particular day.  It is a song for children.  It was the same song our parents sang many years ago, but now it was ours.  Our little group that sat in the belly of the church, soaking up the smell, making paper beads out of old church bulletins, and practicing the Ukrainian words until they felt right. And now there we were, in front of the congregation, listening for clicks and watching everyone's face light up as we began to sing. 

When you grow up, you don’t sing this song anymore; you listen to the children sing.  There is a loophole though- for the past month or so, way before Ryan deemed it an appropriate time to begin singing Christmas carols (good thing he doesn't speak Ukrainian), I have been singing this song to the boys every night before bed.   As soon as they learn it, though, I won’t sing it anymore. It can be their song, in their great-great-grandfather’s language, to pass down to their own children someday.  

A Simple Poem

 

Little boys blue or yellow or green

Whatever shade you feel today

Blow your horns

Sing your songs

Cry your sorrows

Tell your stories

Explore the corners of your world.

Ask impossible questions

Search for the root children.

Play.

I will find you

Rosy checked and beautiful

Nestled against Mother Earth’s heart

Grass clinging to bare feet

Today’s treasures heavy in pockets

And we will walk home 

hand in hand.

Owlie Hats

Tis the season for warm winter hats.  I will breakdown the pattern for this at some point - pretty easy to crochet up in one sitting - as long as you have already cleaned, fed the pets and the family, finished working, the kids are sufficiently distracted, and you are still awake. 

NICU PTSD

Sometimes I have flashbacks.

My mother and I are sitting in her SUV in the hospital's underground garage.  I have just been discharged and we are making our way through the dimly lit rows of cars to reach street level.  I am sitting with my forehead pressed against the window. As we surface I am forced back into my seat by the sun.  I've spent the last two weeks cooped up in a small white hospital room with artificial light and stale air.  This feels unnatural.  As we sit at the intersection marking the boundary between the hospital grounds and the real world, the reality of my situation crashes over me.  I can't breathe. I might scream.  If I wasn't so numb, I would jump out of the car and run back.  But all I can do is cry and picture my tiny little ones in their small white NICU rooms with artificial light and stale air. 

My mother, the maternal juggernaut, does her best to help me collect myself.  She isn't crying, but I can tell she is hurting too. And for the first time, I understand why.  She is feeling my heart ache.  I am her child. I am in pain, and there is nothing she can do about it - a feeling that I had become all too familiar with over the last few days.

Our battle with TTTS had reached its climax with the birth of our sons via Cesarean section at 28 weeks, which gave our boys a fast pass to the NICU.  They were fitted with CPAPs, IVs, and an assortment of wires.  I had to fight every maternal instinct urging me to hold them, hug them, cover them with kisses - and just let them be.  They were so small; a touch bigger than scary small.  They needed help breathing, and I would have given anything just to breathe for them for one moment, just to give their little bodies a break.  My husband and I stayed with them until I could no longer keep my eyes open.     

The next morning I attended rounds. The language was jargon heavy and I had to keep asking questions, though they didn't seem to mind.  They were placed in adjacent rooms, and it would be another month before we were all reunited in one room.  My room was one long hallway, an elevator ride, and two sets of doors away from theirs.  I could have walked there with my eyes closed. The nurses would help me take each of them out of the incubator (I was too nervous to do it on my own) and into my arms or onto my chest for kangaroo care.  In those moments - the room, the machines, the wires, the nurses - all faded away, and all I could see were my sons.  And then it was time for me to go home.

But this was all wrong.  My husband and I should be triple checking the car seats and fussing over how to buckle the boys in properly. We should be driving home at ten miles an hour.  We should be terrified, excited, worried, and beside ourselves with happiness.   Once at home, we'd revel in our first successful diaper change, feeding, bath time, and bedtime. 

Instead, we were just terrified.  
Instead, a rotation of relative strangers will be caring for our babies.

Everything felt like a lie.

I gave birth.          You still look pregnant.
I have two sons.   They shouldn't be here yet.
I am a mother.      Where are your children.

Driving away with my mother that day, I kept thinking - I am a mother. I AM a mother - while every other emotion fought for my attention.  But what do mothers do? I had skimmed through some baby books and had asked my friends with children to find some tricks of the trade, and I was prepared to deal with engorged breasts, to be covered in everything from spit to pee, to not sleep ever again, but I hadn't read anything about this.  How to be a mother while someone else cares for your babies.  

Although I wasn't going back to work, I poured myself into my new job.  Every morning I would drive to the hospital in time for rounds, eventually learning all the jargon.  I would spend as much time as I could holding my darling little ones - singing to them, talking to them.  I had my book or knitting ready for when they fell asleep.  My husband would arrive after work, and we would spend the evening together as a family, making sure to spend equal amounts of time in each room.  As we drove home at night, we would encourage each other to stay strong, that eventually they would come home.  More often than not, the night nurse would receive a phone call from me around midnight, just to check in.

We acted out our lives over the next two months.  I received emails from Baby Center telling me what size vegetable the babies would be that week in the womb.  I printed pictures of the boys to bring to my baby shower.  Ryan painted their room robin's egg blue.   And we rode the NICU roller coaster.   We knew what every number on the monitors meant.   We knew which beeps were good and which were worrisome.  We knew our As, Bs, and Ds: apnea, bradycardia, and desaturation. We learned how to change a diaper through the holes of the incubator.   During Ryan's first go at this, he diapered Sawyer's arm into the mix.  It felt good to have a new parent moment, even if it was under the watch of a nurse.  Slowly, incubators were exchanged for open air beds, and bottles replaced feeding tubes. And then it was time for them to go home.

Sawyer was coming home with oxygen and monitors.  The thought of not having a doctor no more than ten feet away was troubling.  Did they really expect us to be able to do this ourselves?  After a crash course from the nurse on CPR and how to operate an oxygen tank in which I wrote down every single word she said, we packed up two months worth of accumulated baby stuff - clothes, blankets, toys, and cards.

We dressed the boys in the beautiful hand-knitted rompers Ryan's sister made them. We quadruple checked the car seats, and Ryan drove us home at five miles an hour.

Having only held them both at the same time only a handful of times, I knew the first thing I was going to do when we arrived home.

 That was one year ago on October 6th.






  

Welcoming Fall

Michaelmas: Beware the Blackberry Bushes

I love when the seasons change.  It is hard to ignore the beauty of nature as she exchanges her flowery, green gown for one of cascading yellows, oranges, and reds; a palate that warms your soul, which is convenient since you can no longer rely on feeling warmth from the sun.  You have to find it huddled around a bonfire,  in a mug of hot apple cider, or in that worn out, oh so comfortable sweater that you've been waiting to resurface.

The pre-frost harvest of the co-op garden we share with our next door neighbors has brought in the last of the tomatoes and peppers, perfect for chili.

We took the boys to the big wooden playground where they discovered their new favorite thing: fallen leaves.  They gathered and held on to every leaf we came across, and you'd be surprised at how many they could fit in their little hands.  I cannot wait until there are enough leaves to rake up into a pile fit for playing. 

With our autumn spirits in full swing, we celebrated Michaelmas on September 29th.  Michaelmas is one of the Quarter Days.   These are the four days of the year, roughly three months apart, which coincide with religious holidays AND the two equinoxes and two solstices. You can celebrate Michaelmas on quite a wide spectrum, focusing on archangels or dragons or both.  Michaelmas is the Feast of Saint Michael, the archangel who is credited with casting Satan out of heaven (and right into a blackberry bush).  Along with this story, running along parallel themes of courage and bravery, is the tale of Saint George who defeated the dragon of Silene.  Both of these narratives fit neatly into the good versus evil archetypes, but they also encourage self refection of the "evils" in our own lives, internal and external.  Now, as days grow shorter, colder, and darker, is an ideal time to acknowledge and dispel these forces so that we may fill our homes with warmth and light. 

Our celebration was simple and fine tuned to be enjoyable for our boys.  (Although I stockpiled some ideas for when they are a little older and better able to wield swords.)  Since the boys are still working on scribbling, I decided that I would do the Michaelmas crafting this year.  After some late night brainstorming, we decided to make a simple felt tree wall hanging with colorful leaves for the boys to collect and rearrange.

I had some large pieces of felt left over from making their stump playhouse and using the grout lines of our kitchen floor as a guide, cut a large piece of light brown felt.  I folded over the top edge and hot glued a seam, leaving enough room for a dowel rod.  I cut out a dark brown tree, no pattern, just kind of went for it, and hot glued that onto the large piece of felt.  I sketched some leaf patterns and assigned my husband the task of leaf production while I made the bird and owl.  After tying a ribbon onto either side of the dowel rod, we planted our tree on the wall in the boys' corner of the living room.

Our hybrid tree was a big hit!

I also made a Michaelmas pie.  I found the recipe here.  The ingredients come from combining the apple harvest with the tradition of not eating blackberries after Michaelmas because the Devil fell/spit/cursed/and did who knows what else to them after Saint Michael gave him the boot. I used Honeycrisp apples because A. I had some left over from our visit to Soergel Orchards because B. If they are in season, they are the only kind of apples I buy.  It was a simple recipe that produced a simply delicious pie, the sweetness of the fruit was the perfect complement to the brown spices which filled our home with the smell of fall.  Next time - after having a conversation with my pie baking expert mother which probably should have taken place BEFORE I made the pie - I am going to add a little more flour to the filling to thicken it a bit and brush some milk on the top crust to give it a golden brown color.

Now that we have properly welcomed the season, there is a lot of autumn knitting, crafting, and baking to be done before nature changes her dress once again, bringing a fresh set of ingredients, aromas, and traditions.

What Little Boys Are Made Of:

Co-op garden tomatoes and peppers

Our Battlehymn - Surviving TTTS

Over a year later, and I still have trouble thinking about it for too long.  Like if I relive too much, the ending will change.  I think of the other babies and mothers fighting through this devastating disease, and I go numb.  But what can I do? In the grand scheme of things, relatively little.  But I can share our story in the hopes that it reaches someone who needs it. 

******

This story has a happy ending.  I say this now because it gets a little dodgy in the middle, and if you are anything like me, someone who has only seen the ending of West Side Story once out of one hundred viewings, you avoid the tragic. 

This is the birth story of the our identical twin boys and the disease that plagued us along the way, Twin to Twin Transfusion Syndrome.   At six weeks, we were thrilled to find out through an emergency ultra sound and the technician’s use of the word “they” that we were having twins.   At sixteen weeks, we received the devastating news that we suffered from Twin to Twin Transfusion Syndrome. 

If you don’t know what TTTS is, you are in the majority.  Twin to Twin Transfusion can happen when identical twins share the same placenta.  Eighty-five percent of the time, the single placenta acts like two separate placentas, keeping the blood flow and nutrients of each baby separate from the other.  In the other fifteen percent, connections happen within the placenta that result in the unequal sharing of blood and nutrients between the twins.  One twin becomes the donor and the other becomes the recipient; both in a life threatening position.  If left untreated, the chance of survival for both babies is nearly zero percent.  

Picture courtesy of http://www.tttsfoundation.org

This was all being explained to me as I sat alone and panicking in the ultrasound room after being diagnosed with this terrifying disease.  There are several options at this point.  Do nothing, abort one of the babies, amniocentesis to remove excess fluid around the recipient baby, and finally a laser surgery to seal off the connections in the placenta, helping it to function more properly.   The last option came with a seventy-five percent survival rate for both babies, so I immediately scheduled my surgery.  I left the hospital and called my husband, no answer; I called my mother, my middle sister, my little sister, nobody answered.  I finally reached my best friend.  She could barely understand what I was saying in my hysteria.  When my husband came home I sat wrapped in his arms with my hand on my belly, crying, weeping, sobbing and praying that I would get to see my babies alive. 

But then, over the course of a sleepless night, I realized that I could not continue carrying on like an emotional wreck. This was going to be an extremely difficult road, and the last thing the babies needed was an unstable mother.  I wanted them to be able to draw strength from me, and since treating this disease was entirely out of my hands, I felt like this was the one thing I could do for them.  I needed to do this; I needed to at least try. So we charged ahead. 

In the longer version of this story I would explain the details of my surgery, which happened around Mother's Day, that our case had the most placenta connections our doctor had ever seen.  I would have you imagine our excitement in finding out that it had worked and our devastation in finding out that it had come back a few weeks later.  I would explain the details of my second surgery, which fell a couple of days before Father's Day, comparing the anxieties between not knowing and knowing what to expect this second time around.  I would express our cautious  acknowledgement that the second surgery was successful.  (Although if you really want to know you can read about it here.)

                  I will summarize by saying this: every day was potentially the last day I had with the little ones I was trying to keep safe.  Forget living day-to-day, I was living hour- to-hour.  I had to dig deep to try to balance this anxiety with my resolve to remain strong.  But at times, it was all just too much.  Luckily, I had a support system that could keep a house up in a tornado.

            My hypersensitivity compelled me to make an impromptu hospital trip when I felt like something wasn’t quite right.  I was dilated one centimeter and they kept me for observation.  This was at 27 weeks, that is 13 weeks too early for those keeping track at home.  The next morning my water broke and I was told I would be taking up residence in the hospital until the babies arrived, which everyone hoped would not be for another couple of weeks. After one week of hospital food and blood pressure readings every six hours, on August first, which happens to be our two-year wedding anniversary, the boys decided it was time.  

            Sawyer and Greyson were delivered by cesarean section at 2:38 and 2:39 in the afternoon, weighing in at 3 pounds 1 ounce and 3 pounds 4 ounces.  They were tiny, but perfect.  We gave them each a kiss before they were taken to the Neonatal Intensive Care Unit, a place that would become a second home for us for the following two months, but that is a story for a different day. 

            The day that we brought them home, oxygen tank, heart monitor, and all, our TTTS saga was finally coming to an end and the real work of raising twins began.  All of the work, all of the heartache, all of the anxiety, all of the hope had brought our two little ones into this world and home safely, and I would do it all over again – every single time.  

            This story has a bit of a moral; maybe it is more of a message.  This is a rare disease, and we were lucky to be at a a hospital with a leading expert in the treatment of Twin to Twin Transfusion Syndrome.  Other women and babies are not so fortunate.  The way to fight this killer is to catch it early and monitor it closely.  After reading this story, you are now in the know.  If you told one other person, and that person told another, and so on, this information may end up reaching a person who may really need it.  You may help save a life, or two.  And don't mistake that last sentence for a trivial, sentimental way to wrap up this story. It is simply the truth.