My daughter’s 3rd anniversary of a stroke & diagnosis of Moyamoya
Not that you want an anniversary like that in your family.
I’m weepy this morning.
Three years ago this week, our third daughter Polly, who was born with Down syndrome, had a catastrophic stroke that resulted in temporary paralysis on the left side of her body and the diagnosis of Moyamoya disease, a very rare condition that thins the arteries in your brain to the point of stroke and seizure.
Every year I re-post my blog entry about Polly’s stroke, and how God met us there at that time of great struggle and fear.
After this post, Polly regained movement on the left side of her body with the help of physical therapy. She had two brain surgeries, one for each side of her head, and spent about a week in the hospital after each one.
Although she still sees a neurologist and a neurosurgeon twice a year, and still takes a daily aspirin and anti-seizure medication, I am happy to report that the blood is flowing freely in her brain, and so far since the surgery she has been stroke and seizure free.
In the blogging world, a post should be around 500 words. Sorry, this one is three times that size. But it’s my stake in the ground. I need to read it every year.
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 breathtaking, really. It was Michigan at its best.
I was alone, amazing in and of itself. There was no one in the back seat 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 the 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 sleepover 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?”
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.
The diagnosis of Moyamoya
Later Monday night Polly woke from 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 bypass 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 situation 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.
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.
More about Moyamoya … if you are interested:
Moyamoya is a Japanese term that means “puff of smoke.”
According to Children’s Hospital Boston…
“Moyamoya disease is a very rare condition in which the walls of the internal carotid arteries – which supply blood to important areas of the brain – become thickened. This gradually slows the flow of blood to the brain and increases the likelihood of blood clot formation, both of which can lead to strokes and transient ischemic attacks.
In this condition, small blood vessels also form a network of “side roads” trying to supply oxygen to the oxygen-starved areas of the brain once served by the narrowed arteries. These many tiny blood vessels show up clearly on an angiogram, explaining the name for the disease; in Japanese, “moyamoya” means puff of smoke.”
Apparently there are only a couple hundred cases diagnosed every year. This is a rare disease. The only viable treatment option is surgery. For children the most popular surgery performed for Moyamoya is pial synangiosis. Basically, a large artery from the outside of the head is attached to the brain which in turn, with time, creates new blood flow, essentially by-passing the un-healthy, lack of blood flow do to the disease.