Moyamoya? Oh, my.

It’s been an interesting week in the Marchenko household. 

Last Saturday found me driving down US 131 in Michigan, the autumn tree colors glorious against the crisp blue sky.  The day was breath-taking, really.  It was Michigan at it’s best. 

I was alone,  amazing in and of itself.   There was no one in the backseat to ask to stop hitting her sister, I was not trying to drive with one hand and give someone a snack.  The radio played what I wanted to hear, the space in my mother’s borrowed red little car was clean and all mine.  I also was encouraged by God.  I was happy.

Earlier that morning I spoke at a women’s retreat up in Holland.  My text was Psalm 84 and I talked about Polly’s birth in Ukraine three and a half years ago and that her diagnosis of Down syndrome devastated me and how eventually I felt that God was asking me to pull my family together and to move closer to Him, like the sparrow does in verse 3. 

Even the sparrow has found a home,
       and the swallow a nest for herself,
       where she may have her young—
       a place near your altar,
       O LORD Almighty, my King and my God.

The ending of my shaky, unpolished talk, having had to wipe my forehead of sweat far too many times to look put together, focused on my rejuvenated assurance that Jesus is not only the destination for my life (i.e. eternity with him) but also the companion. 

Psalm 84 talks about pools of blessings gathered together from valleys of weeping.  I stood in front of a group of women  sure that God’s will for our lives is good, in that moment truly confident that if we all could stay close to him, that blessings, both bitter and sweet, were sure to come.  

What joy for those whose strength comes from the Lord,
      who have set their minds on a pilgrimage to Jerusalem.
 ⁶ When they walk through the Valley of Weeping,
      it will become a place of refreshing springs.
      Like pools of blessing after the rains.
 ⁷ They will continue to grow stronger,
      and each of them will appear before God in Jerusalem.

The next morning, Sunday, after visiting one of my favorite places, The Chapel, and witnessing dear friends dedicate their new little guy to God, our minivan was pointed towards Chicago.  Our weekend plan was well thought out; Elaina and Evangeline stayed back with Sergei in Chicago, Lainie had a commitment on Friday night and Evie still needs to stay close to a parent at all times.  Zoya and Polly, both free and up for a sleep over at Grandma’s went with me to Michigan.

Polly was fussy.  I attributed it to an early morning start, a large church and a new Sunday school class.  At one point in the rear view mirror I noticed her shaking her head.  After about a minute she stopped.  And I did not think anything of it.

Thirty miles down the highway she was still crying on and off and generally was not happy.  Zoya and I decided we could all use some brunch and pulled into a Bob Evans restaurant.  Polly seemed to like the idea of pancakes.

You know how you get a child out of the car and stand him or her up, threatening dire consequences if any movement is detected, and turn back to reach in and take another kid out of a seat coming and going from anywhere (there has to be a mom who is reading this that knows what I’m talking about)?  Well, I got Polly out of the car after we parked in front of the restaurant, stood her up and reached back in for the diaper bag.  She immediately collapsed to the ground.  My awesome mommy radar; I thought I had knocked her a bit and messed up her balanced.  I said sorry, she stopped crying enough to laugh at the cutesy voice I used.  I scooped her up and carried her into the restaurant.  Again, I didn’t think anything of it.

We were seated and I quickly ordered meals for all three of us when really, the waitress was only asking about drinks.  Polly started to fuss.  She really just needed a good meal and some attention and she would be fine.  The waitress walked off to put in our order and I got Polly out of her high chair and hugged on her in my lap.

After a couple moments her head started shaking again.

She could not stop herself.

And it clicked. 

Something was wrong.

I barked at Zoya to get her coat, grab the diaper bag and follow me.  Heading out the door,  a manager asked if we needed an ENT.  By then Polly had stopped shaking.  She was breathing, coherent and interacting with me.  I thanked him for his concern and herded my little half of the family under my responsibility back out to our gray minivan.   Zoya was miffed that we had to leave before the pancakes came and I was angry at her for being selfish.

And I was really scared.

Once everyone was buckled into their seats, I called Sergei on the cell.  Now, mind you, it was Sunday morning at approximately 10:55am.  My husband is a solo pastor of a small church on the north side of Chicago.  The night before the guy playing guitar for worship came down with a stomach bug and none of the other musicians were going to be there that morning.  Serg had stayed up until 2am in the morning learning the songs to accompany the singers.  And he had Elaina and Evie all morning during rehearsal, prayer and Sunday school.

I was calling him five minutes before the service was going to start.

“Serg, I don’t mean to bother you but….(crying now), something’s wrong with Polly.”

As I explained to Sergei the shaking, and how she collapsed and how upon our return to the car she would not bear weight, nor could she move her right leg at all, Polly’s head started to shake again.  This time her leg was kicking out too.  She couldn’t stop herself. 

I started to cry harder. 

I imagined my husband standing in the foyer of the building; church members and visitors trickling in.  Him giving silent nods and tight-lipped smiles, making eye contact and trying to focus on the phone with me and understand what in the world his petrified wife was telling him from Michigan City, Indiana.

“OK, Gillian, is she breathing?”

“Yes.”

“Coherent?”

“Uh, huh.”

“Interactive?”

I looked back at Polly and asked her if she was alright?

“No,” she whispered as her head continued to shake.

The shaking finally stopped.  I asked her to kick her feet.  She only could kick her left leg.

“Drive home, Gillian.  You’ve got 50 miles.  Come home and we’ll take her to the ER at Children’s.”

I hung up with Sergei and asked Zoya to pray with me.  Polly bowed her head before I closed my eyes to ask God for his help.  Dear, sweet girl.

I sped home, the next hour went by quickly.  Watching Polly out of the rear view mirror I tried to figure out what in the world just happened.  I knew that she had some kind of incident three times, all lasting about a minute, involving her head and leg to shake involuntarily.  And now, she could not move her right leg, at all.  Her right arm seemed fine albeit a bit slower than the left.

We got to Chicago and I brought Polly into the house.  She kept trying to walk and repeatedly fell down. 

Sergei rushed over about ten minutes after our arrival and Polly and I were once again in the car headed to the ER at Children’s Memorial Hospital.

After about four hours in the emergency room, we were told that Polly had three seizures causing the temporary paralysis of her leg.  By then Sergei was there with us, he found a friend from church to come over and stay with the kids.

The neurologist who saw Polly decided to admit her overnight for observation.  And on Monday they wanted to do an EEG and an MRI to find out what was going on.

I went home Sunday night alone, leaving Sergei laying next to Polly in a hospital bed watching Word World on PBS.

Monday morning at 8:30am Evie and I were back up to the hospital.  After a quick visit for Evie and Polly Sergei took Evie back home and I started my day shift with Polly.

She had an IV in and was not allowed to eat or drink anything, nor was she allowed to sleep.  No food for the MRI, no sleep for the EEG.  The day was long but Polly was a trooper.  We talked and sang songs.  I so enjoyed her laying on me, breathing her in.  The pleasure of having her with me, at peace, was intense.  I prayed throughout the day that Jesus would keep her well and safe.

After a very long day, Polly managed to have both tests completed.  She was put under general anesthesia for the MRI and I sat in the cafeteria and ate some dinner; the first food of the day.  I didn’t want to eat in front of Polly.  I watched other parents in the cafeteria, trying to imagine what illness had brought them there.

Later Monday night Polly woke for the anesthesia, Sergei was with us and we were told the results of Polly’s tests.

Moyamoya .

What a shock.

We had no clue what that was.  I had heard of it on my Down syndrome boards on-line here and there but all I really knew about it was that you don’t want your kid to have it.

The Doctor explained that it had to do with blood vessels in Polly’s brain progressively narrowing, resulting in strokes.  The disease worsens with age.  And the only way to combat it is brain surgery.

On Tuesday we met with the surgeon qualified to do what Polly needs.  He walked us through what an indirect by-pass would look like for Polly; basically it will create new blood vessels providing adequate blood flow. 

Polly stayed in the hospital, commanded to lay flat for the next day and a half and we got to bring her home yesterday (Wednesday).  We have to wait four weeks after the stroke for surgery.  It will probably be mid-november.  And there will be two surgeries.  One for each side of the brain.

We still have a lot to learn about Moyamoya.  But for now we wait, and pray, earnestly, that she will not have any more seizures or complications or strokes in the next few weeks.

Unbelievably, Sergei and I feel like God was preparing us for this.  These last few months I have been spiritually dry; emotionally depleted as we’ve attempted to get Evie the help she needs and get to know her.  The women’s retreat forced me to read scripture and pray.  In preparation of my talk God reminded me of Polly’s story; of tears and struggle and depression.  And later the pure joy and sunshine that Polly has brought to our lives.  God reminded me that he walked with us through that experience and that he is with us for whatever comes.

But I didn’t think something else was coming quite so quickly. Like, the next day.

We appreciate prayer for Polly. 

And pray that I will have enough wisdom in this sitaution to trust God and to walk with him; to gather up my family and once again move closer to him, to the throne of grace, for all of our sakes.

Moymoya?  Really?

¹⁰ A single day in your courts
      is better than a thousand anywhere else!
   I would rather be a gatekeeper in the house of my God
      than live the good life in the homes of the wicked.
 ¹¹ For the Lord God is our sun and our shield.
      He gives us grace and glory.
   The Lord will withhold no good thing
      from those who do what is right.
 ¹² O Lord Almighty,
      what joy for those who trust in you.

The windows are open…

I sit here tonight in my silent living room, the girls’ movement quieted upstairs, lights off, rest time.   Sergei out jogging, listening to a sermon, I’m sure.

The windows are open.  The glorious sunshine of the day set and forgotten; having done it’s duty honorably and with it’s push downward up springs a pleasant, breezy evening.  My street is alive with chatter as people happily pass the house walking home from work, while others make their way to meet friends for a drink.

I feel settled, coming into our third summer at this large gray house here in Chicago.

And although another cosmic shift in our minute lives is about to take place with the addition of  Marchenko #6, tonight I relish the feeling of peace.  I love the first nights of summer when we can keep the windows open.

This is the time of year for new beginnings, the leaves burst forth on trees and perennials spring up and we give an amicable nod to the last footprints of winter as we watch it walk out the door.  I love this time of year.  Before it’s too hot to just sit and enjoy the sounds outside.  Before the windows are slammed down and the air condition is cranked up.

The first nights of true summer…

Relational Capacity

I dropped my two older daughters off at day camp this morning.  They are part of Chicago’s six week park district program, 9-3, everyday, or I guess I should say as much as they want to go.  We’ve never done something like this before so we’ll see how it goes.

This morning after the girls’ hair was brushed to the side, after backpacks were stuffed with bathing suits and towels and water and sun screen, after Polly was dressed in oversized school t-shirt and buckled into her car seat, I looked back at my kids. 

Elaina was grinning ear to ear.  She was literally squealing, albeit under her breath.  She couldn’t wait to get to camp. 

Zoya was quiet.  She has not yet bought in to this whole day camp idea.  This morning before we left we stopped a moment to pray and she asked that we’d pray she’d make a friend.  One friend.

Elaina will eat up the day camp experience.  She is ready to make friends with every child there.  And I bet she does too.  Zoya will be happy to find one girl in her little group.  She will pointedly ask the little girl to be friends and then she will stick closely by this little ally through thick and thin; through the “getting to know you” time, when receiving her new t-shirt for the summer program, as she explores her first camp boxed lunch.

My kids’ relational capacities are significantly unique and completely different.   

And it makes me wonder.  What is my relational capacity?  What was my relational capacity before three children?  Before ten years of marriage?  Before 7 moves and six hours a week of therapy?

Honestly, I am not very good at friendship these days.  Of course I have friends.  I like the people at our church and I try to meet up with them here and there.  I have some great girlfriends from high school who still like me after sixteen years of friendship even though sometimes I don’t communicate with them for months. 

Some neighbors on our street have quietly moved over into the friendship category, not because of time spent together, but simply because I know I could ring their doorbell any time for a cup of sugar or call in the middle of the night if we need to take a kid to the emergency room.

But sometimes at night when S is gone and I am watching something on TV totally embarrassing to admit (like the Bachelorette, I know) a thought will pass through my mind, “boy, it would be nice to call someone right now, just to talk.”

I am not there right now in my life, though.  I am at my limit most days with therapy schedules and camp supplies, bills, cleaning, food, writing, there just isn’t much left for anything or really, anyone else. 

What about you?  How is your relational capacity?  Do you have a lot of friends?  One or two?  None?

Maybe I should invest more of myself in the people around me, people outside of my little nuclear family who are ready to be invested into.

Maybe tomorrow. 

Tutu Much

I wrote a post for Chicago Mom’s Blog about Zoya’s dance recital last weekend.

I am still feeling sheepish contributing there, like I’m the new girl that doesn’t have any friends yet.

Check it out here, if you’d like.

What would you do with three hours?

S took Polly to preschool this morning.  They will not return until 12:30pm.  There’s a dishwasher to unload, two loads of laundry to fold and put away, junk piled up on the dining room table and dust bunnies monsters roaming around our upstairs floor, scoffing at the notion of a dust pan and broom.

With three young children, these times are rare.  In fact, I will not have this again for a while as tomorrow is Zoya’s last day of Kindergarten.

Here I sit with my coffee. 

What would you do with three free hours?

If you are going to post that you would clean, I urge you to click away.  I am just not interested in hearing that this morning.

In the Zone

This post is part of this weeks Hump Day Hmms.  Click over to read more about what others are saying about comfort zones.

Last Thursday night I went to a Moms Night Out for my kids’ school.  It took me an hour to figure out what to wear before I left.  It was not going well.  In a moment of pure insanity, I even tried on a pair of maternity jeans I had set out for a friend who is expecting.  While admiring the boot cut fit, I schemed about a shirt that would actually cover the elastic band around my waist.  Then I imagined bending over at the party and showing off my secret to neatly dressed, put together women and I peeled off the jeans and chucked them across the room. 

Going to the party was definitely out of my comfort zone.  

Which begs the question:  where is my comfort zone?

And the answer:  I have no idea.  I have not been comfortable for years.

There have been many changes in my life in the last six years.  Sometimes I liken myself to having gone through menopause several times. 

First we moved to Kiev, Ukraine.  Elaina was 2 1/2 and Zoya was 9 months old.  For two years my husband helped out with a church plant in another part of town while buying groceries, paying bills and looking after his little foreign family.  I studied the Russian language full time and learned to walk to the Metro station looking down at my feet.  Things that came easy to me, American mannerisms like smiling at strangers, wearing your shoes in the house and Kraft Macaroni and Cheese were boxed up and left in my mom’s attic over the garage in Michigan.

Time went on.  I tucked comfort around my children in our little seventies style apartment like a warm fleece blanket the only way I could think of.  I mixed our new culture with the old, pouring the American Happy Birthday song in with the custom of not wrapping birthday gifts in Ukraine.  We dressed the girls up in costumes for New Year’s Day and pretended it was Christmas.  I found the only store in Kiev that sold Lasagna noodles.

Everything I did in Ukraine was uncomfortable, until one day it wasn’t, and I was able to conjugate the verb ‘to buy’ in Russian’s past, present and future tenses.  After three years there I noticed friendly faces around me, offering to show me how to make a warm compress for my daughter’s cold instead of reaching for Tylenol.  We were part of a church that was growing closer to one another and to God, and my oldest daughter was learning addition and subtraction in her Ukrainian preschool.

I almost felt comfortable.  So we decided to try for our third child.

God blessed our efforts and along came Polly.  She was born there in Ukraine, three weeks early, in a private hospital that looked a lot like our western hotels.  After her birth I had to learn a new language.  I had to find out how to speak special needs; words like Down syndrome, IEP, therapy, hypotonia.

We landed (twenty days overseas in the NICU, packing our lives up once again, saying goodbye to our church) in Michigan and attempted to find comfort in our new surroundings once again.

I thought that moving back to the States would be easy.  I already spoke the language here.  Only, my time overseas changed me.  A large part of me identified with Ukraine.  I was out of place in church.  The music was loud.  There were too many faces.  Every thing was so big and people had a lot of stuff.    I came home from Zoya’s preschool round-up drenched in sweat.  I remember standing in the school supplies aisle at Walmart, overwhelmed by the variety of paper and pens and lunch boxes.   

And then last summer, we moved again, from Michigan to Chicago, from rural to urban, from middle class to upper class, from being average church goers to my husband pastoring a church.

And once again I am out of my comfort zone.

So, you see, there really is no such thing as small talk in my life.  Which is why I dreaded the Mom’s Night Out last week.  My small talk either gets big quickly or it gets quiet.  Simple questions like, “where did you live before you moved here?” or “what does your husband do for a living?” or the ever present, “tell me a little bit about your kids?” do not have simple small talk answers. 

After I found an outfit that fit, the party last week wasn’t that bad.  I made small talk.  The questions came up and I answered shortly, “we lived in Ukraine,” “my husband is a minister,” “I have three girls; seven, six, and two.”

My life has changed so much and so quickly, at times it’s like watching a three ringed circus.  I have the poles and the plates, I am just having a hard time getting them all to spin at once.

In the midst of all these changes, I am finding that comfort is not really the point. 

I speak different languages; special needs, English, Russian, Christian, urban, rural.  And every language molds me a bit more into who I am to become. 

I guess I am learning to speak small talk here in Chicago as well and to be OK with it.

That, in and of itself, brings me a bit of comfort.

Patheticism

I made up a new word:  patheticism.

Yesterday morning I woke up with a tight back.  I rarely have back issues.  Although I do remember one time my back gave out when I sneezed.  S and I were newly married and living in an unbelievably hot and dusty one bedroom apartment in the Ukrainian Village here in Chicago.  I remember spending two days straight flat on my back.  Our good friends brought over their television so that I would have something to do to keep my mind off of the pain.

So this time, I didn’t do anything major like sneezing.  What I feel is more of a dull ache and a lot of tightness.  It makes for a long day when your two year old is not walking and weighs 26 pounds.

Sleeping flat helped.  Until I got up and started walking around at 7 am.

Polly had physical therapy this morning.  Lately she has been doing so well in her sessions, but today she cried and cried and cried. 

I know she isn’t really sick because she just saw her doctor yesterday for a check-up.

Decidedly, it’s her teeth, still.

The PT left, I gave Polly her obligatory dose of baby Tylenol and then we laid on the floor whinning to one another.

After a while I got her, somehow, up to her bed for a nap.  She was glad to go. 

I just looked up patheticism.  It seems I did not make this word up.

Patheticism:  In its simplest terms, it’s appearing helpless enough that one does not present any danger to those with the power to do one harm.

Exactly.

 I’m going back to the floor. 

The Mom at Gymnastics

The names in the following post have been changed to protect those unknowingly written about on my blog.  The people are real but their names are different.

—————————————————-

You never know who you end up sitting next to, or what their story is. 

I posted about Elaina signing up for gymnastics.  I waited outside her class with a book on the first day.  I wasn’t very interested in reading.  The book wasn’t that good.  

Another mother sat next to me.  Her book looked better than mine.  I asked her about it and we chatted a bit here and there.  She laughed when I overheard someone mention that the gymnastics class was for experienced gymnasts.  The look on my face communicated that my child was a beginner. Elaina would just have to pretend that she knew what she was doing.  

I remember thinking this lady was nice. 

The next week, a rainy Tuesday, S had a meeting.  So off to class we all went; me, Elaina, Zoya and Polly.  I had a headache.  Polly was fussy.  Zoya decided spur of the moment that she really wanted to take gymnastics instead of ballet so her nose was out of joint. 

We shuffled up the cement stairs and into the building.  Polly straddled my hip, coat unzipped and falling off; her hair was coming out of the ponytail on the top of her head.  It hung in her face.   

The class is just an hour, but I wasn’t about to hold Polly on my lap for the duration.  We couldn’t play outside at the park because of the rain and the floor looked pretty dirty, well, dirty enough that even this seasoned mother of three wouldn’t put her youngest down to toddle around on her hands and knees.  Plan B was to drop Lainie off and head home.  Sergei would pick her up later. 

The nice mom with the good book walked in a few minutes after us.  Immediately, she noticed Polly. 

“You’re the minister’s wife, right?” 

I was surprised.  Most people who know that S is a minister try to avoid the topic. 

“Yes, how did you know?” 

“I’m Sarah, Charlie’s mom.” 

My mind jogged back to last summer.  We were new to Chicago.  One day S came home from the park with the girls.  He told me that a lady came up to them.  She wanted to meet Polly.  As they talked, he found out that she, too, had a child with Down syndrome.  But her son had serious health issues, and he passed away. 

“She gave me her phone number and wants you to call her,” he said. 

I was scared to call.  While punching in her phone number on my cell, I took a deep breath.  Waiting, I looked out the window.  The view was still new to me.  The Japanese maple tree planted in front of the porch was in full bloom. 

I left my name and number after the beep. 

A few days later, she called back.   

It was getting dark outside.  All the windows were open.  People chatted as they passed our house on the way to a restaurant or a bar.  S figured out how to get a few stations in on the TV with the rabbit ears and we were watching a rerun.  I can’t remember what show it was.  But I do remember our house was barren.  The living room held two chairs, empty bookcases, the old television.  Boxes lined up against the wall. 

We talked about Polly for a little while. I briefly covered our history, …lived in Ukraine for a few years as missionaries…had Polly there…she was very sick at first, in the NICU for twenty days…on the sixth day a blood test confirmed the Down syndrome…six weeks later we were on a plane, headed back to the States, primarily to care for Polly, holistically, because we all needed the care.  We talked about Early Intervention in this area and about therapists who were good.  I wrote down her recommendations. 

Then I asked her about her son.   

And she began to cry. 

“He had a lot of things going on.  His little heart just couldn’t take it all.  When we found out he had Down syndrome, I told my husband we could handle this.  I knew that we would have struggles, but I didn’t think Down syndrome was that big of a deal.  But his health issues were something different, entirely.” 

After Charlie died, Sarah started a preschool named “Charlie’s Place.”  The goal of the preschool is to provide a safe, learning environment for all children.  Sarah’s dream is to see the preschool integrated with typical kids and kids with special needs, so that they can learn from one another. 

That evening, sitting in the dinning room, in the dark, I said something to this mother that still haunts me sometimes.   

“It’s taken me a while to grieve Polly’s diagnosis.” 

I did not decide to grieve.  When Polly came along it’s not like there was a drum roll somewhere off in the distance.  I did not say, “And now, officially, I will fall apart.”  It happened gradually.  It was like a small cloud, quietly, most assuredly taking the place of th sun, until you are left in a shadow.  

I felt my heart sort of tip a bit after the words were out of my mouth.  I gasped.  I was ashamed.  This woman was actually grieving her child.  She couldn’t hug him anymore, or kiss the insides of his elbows, or watch him smile and hear his laughter as he swings back and forth at the playground.   

These are the things I’ve been thinking about this week: Writing about Emma and then, Ella, running into a mother who is bravely living life despite her great loss.  Walking around the neighborhood, pushing Polly in her pink polka-dot stroller, Lainie and Zo leading the way with their brightly colored helmets, peddling as far away from me as they dare.  Indubitably stopping at a street corner. 

I can’t help but pay attention to the blessing of health.  And at least, for today, not take it for granted.  I’ll clap for Polly in therapy every time she puts another block in the bucket.  I’ll act silly, smile and dance around when she cruises up and down the couch.  I will let Zoya read me “Not Dots” for the fiftieth time, simply because she is reading.  I will not turn a deaf ear to Elaina as she talks to me again about friend troubles at school.   

Polly’s face lights up when her favorite therapist walks through the door.  The one who lets her pick what to do next, who applauds after an impromptu song, who lets Polly pick the same book every week, because she knows it’s her favorite.  They like to play with playdoh together.  “Rolling, rolling, rolling, rolling, roll it out, roll it out.”

This is one of the therapists Charlie’s Mom recommended.