Posts filed under ‘Jesus’

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.

October 22, 2009 at 6:58 pm 71 comments

Day Twenty-four

 To say that I was not prepared for Polly’s diagnosis is putting it lightly. 

The first few days after we knew the test results were positive, I was dehydrated and shattered and shocked.  It was not really a shock but more like continual zaps. 

Each day was like a labor contraction.  I fell asleep thinking that I absolutely could not bear the next day.  But the next day came, like all labor contractions do.  Many moms have said, and I agree, that the anticipation of a contraction during labor is almost worse than the actual contraction.  That is why the rests in between are unbearable. 

The only thing I could say over and over after Polly’s diagnosis was, “I don’t want this.”  I could not say that I did not want her.  Well, not out loud anyway.  I was a missionary for heavens sake.  But I didn’t want her.  I had horrible thoughts.  Thoughts that a mother assumes she is unable to have.  “Maybe she won’t wake up today.  Maybe I will get my life back.”  I’m a Christian.  I am not supposed to believe in luck.  I felt like the most unlucky woman in the world. 

A time in life that is supposed to be a hallmark of great happiness, lay deflated in the pit of my stomach.  I wasn’t paralyzed with grief, I was deadened.  I was living in a different, fuzzy world.  I tried to put on a brave face like a layer of make-up every time I left my room.   

It was difficult to sit in the nursery with Polina, unable to hold her, unable to care for her physical needs, not wanting to care for her emotionally.  Sometimes I was able to get outside of myself and then I was ashamed of what I saw.  As believers we are told to be good testimonies to others.  The hope is that others will get to know Jesus by watching us.  What a horrible knock-off.  I tried to muster up the strength to pretend that I was handling it all well.  Mostly I rolled with the disconnect I felt towards my child and towards my life and towards my faith.  I would sit quietly by my daughter in the nursery for a while and then race back to my room and cry until I fell asleep.

Remember when we were little, how sometimes an elementary school day felt like it lasted a lifetime?  You would find yourself looking at the clock, thinking, ‘surely it’s time to go home now,’ only to find that it wasn’t even lunch time yet?  I imagined that my life would now be a really long day in school.

Sergei came to the hospital early every morning, a black thin-lined Bible tucked underneath his arm.  He took turns sitting with me and the baby all day long.  We cried, we prayed, we talked about the “what ifs” of our future.  We wondered about how to live now.  Most days ended in a good place having successfully broken through the chaos of our emotions, grabbing on to whatever comfort we found in God and in one another.  Then he would leave my little hospital room around nine at night, unto his next duty of taking care of the kids and my mom at home and I would sit on my bed, underneath the large fluorescent wall light, on top of the crisp white sheets, completely lost again. 

My middle daughter cannot sleep without her favorite pillow.  I could not breathe that week without my husband.  The next day he would find me lumpy and sad, and we would start again our attempts at healing for the day.

October 25, 2008 at 3:28 am 2 comments

Day Twenty-one

While we waited for Polly’s test results, friends and family came to visit.  Ukrainians brought food.  Americans brought cards.  My friend Raya brought ice cream and sat on the edge of my hospital bed while I fumbled for words Russian, nodding and agreeing.  Understanding without words. 

Visitors would tip toe into Polina’s sick room wearing blue paper robes, wash their hands in hot soapy water for a minute and walk slowly up to her incubator.  Some smiled when they saw her.  Some prayed.  Many asked questions and got very interested in the equipment.  Others were silent.

Then we’d walk back to my room and talk about the delivery, her condition, how I felt and how this whole situation was affecting them. 

I found myself wiping away tears, quoting Bible verses, comforting, trying to make some sense out of our circumstances for their sake.  It was easy to be more positive because we didn’t know for sure if our daughter had Down syndrome.  When I convinced someone else of God’s love and grace and help, it convinced me for a little while as well. 

It was hard too, because I tired quickly and sometimes I wanted to say, “look, at the end of today, you are going home to your usual life where nothing really has changed.  I will still be here quite possibly for the rest of my life and I can’t be bothered with supporting you.” 

Don’t we all go through life feeling entitled?  When things happen outside of one’s plan, others around that person think, “poor her, poor him.”  I am not a gambling gal, but I would put a hefty wager on a person’s second thought, “thank god it’s not me.”  I imagined people coming to my hospital room or calling, heartfelt sadness and fear in their voices.  I imagined their thoughts of sympathy for what they would assume was our misfortune, fervent prayers on our behalf and then I imagined them later on that day, plopping down in front of the television with a nice snack, laughing at a rerun of Everybody Loves Raymond. 

But they tried. 

Everyone had a story about kids with Down syndrome.  Many people told us those who lead normal lives.  Some kids go to college, live on their own, hold jobs, make their own lunches.  The first time I talked with my brother from California he reminded me of the show I loved in middle school that starred a guy with Down syndrome named Corky.  Another very good friend told Sergei and me about a girl he knew who is a real cool kid.  “She can talk and everything”, he said. 

I felt like people were saying albeit sub consciously “you have a kid with Ds, but we are painting a picture of her, making her as normal as possible.  “You are going to have the smartest, most well developed child with Down syndrome ever raised!” 

And I wanted to hear it.  It was helpful to hear about families who adjusted to this twist in life. To know that there are people who are happy and feel blessed with their children. 

Then well wishers hung up and went home and I sat in my tan hospital room across the hall from my little girl in her plastic house.

But I wasn’t alone.  Without invitation, even against my will, Jesus was in the hospital room with me, uninvited, quiet.  He did not demand or even expect my attention at a time when everyone else did.  He let me cry.  He stood close to me.  He held my hand, strong but smooth.  His grip was tight.  And I knew he was with Polly in her room too. 

During those times I felt strong, in spite of myself. 

I may have even thought once or twice that we were going to be OK regardless of the test results.

October 21, 2008 at 6:40 pm Leave a comment


Our new friend Hope needs our prayers too!

Polly needs our prayers!

Reece’s Rainbow Christmas Angel Tree


To Select a Bauble For Your Blog
CLICK HERE

Archives

All material on this blog is copyright of Gillian Marchenko