It came and went

I just looked at the calendar this morning and realized that Polly's stroke date, October 17th, came and went this year. It's been two years since she had a stroke and was diagnosed with Moyamoya disease and underwent two brain surgeries to combat Moyamoya's nasty artery thinning abilities.

 Polly after her first brain surgery for Moyamoya in December of '09

Last year, my body sensed the date coming. All that week I walked around the house with my shoulders pressed upwards towards my ears from stress. This year, instead, I've been thinking about querying agents for the book I wrote about Polly, and about Evie's birthday coming up, and about buying candy for the weekend and catching up on laundry.

I didn't think about the stroke day. Not once.

Moyamoya will always be a part of our lives. Another stroke could pop up at any time.

But I am so thankful that Polly is here, today, stroke free, probably raising cane right now in her mainstreamed kindergarten class.

I'm thankful for her health and that at least this year, October 17th was just another date on the calendar.

Polly this year on her first day of Kindergarten

Polly Update, is full inclusion of kids with special needs always the best choice?

Polly's most recent big news is that she no longer requires glasses. We saw her Ophthalmologist at Children's Memorial Hospital a few weeks ago, and he said her lazy eye has strengthened and her far sightedness is minimal for now. She does still have Nystagmus, a condition where the eye ball shakes, but that has died way down too. We will visit him again in three months. Polly looked adorable in glasses, but she was always losing them and breaking them. One less thing to worry about makes a Mama happy!

Polly is healthy. She had her annual Moyamoya brain scan and the blood was flowing well! We have not detected any other incidences of strokes or seizures. Thank you, God!

We are working on finalizing her potty training so that she will be accident free and ready for class in the fall, she still is head over heels for Evie and includes her in her activities at home all day long. She jokes, she follows conversations, she contributes. And when one of us are hurt or sad, she is right there with us, hugging, talking, making us laugh.

She continues to amaze me every day.

Full Inclusion? Is it always best?

In June, Polly graduated from preschool. She had a great year and we were sad to say goodbye to her beloved teacher Ms. Barbara. After much worry and prayer, and touring other schools, and weighing the pros and cons, it has been decided that Polly will attend our neighborhood school and be fully included for kindergarten next year. She will have a one on one aid.

This decision scares the crap out of me, even though the growing trend is for kids with special needs to be fully included in school. I am nervous because she is coming out of a blended pre-k where she got the best of both worlds; both typically developing and kids with IEPS in one classroom, and two teachers, one of whom was focused primarily on kids with IEPS.

Polly did well in that classroom setting but it was still a challenge. She struggled with transitions. Her fine motor skills (pre-writing, etc...) were slow coming. She was behind her peers both socially and academically and gave the teacher she loved so much a run for her money several times a week.

When making this decision, Sergei and I tried to find a blended classroom for kindergarten, but Chicago has done away with it for that grade level. We toured a school that kept kids in the typical program as much as possible, but also had a self contained classroom that would include other students for math, and writing and reading. We tried to get Polly placed there, the rest of her IEP team agreed that was the best option for her, but the school denied our access. Our awesome neighborhood school (where Elaina and Zoya both go) stepped up and agreed to meet Polly's needs at home.

My question is this: Is full inclusion always best?

My concern for Polly fully included is that she will actually experience even more exclusion. When she'll need help with academics in kindergarten (and she will) she will be pulled out of class with her aid. I'm worried she will be working alone, a lot, in another room away from her classmates. Also, Polly is a smart cookie. Will she notice the difference and feel the pressure as she struggles to hold a pencil and write the letter "P." Will she notice her peers fly through their names and move on to another assignment?

She'll probably do fine. Polly is smart and confident and has taken on every challenge in life with grace and determination. (And if it is too much for her, I can always call another IEP meeting and we can work on another placement.)

I see her placement as an experiment. If she is not doing well fully included, we will re-evaluate and if need be, we will find a better fit for her. I believe in full inclusion, but I do not believe that it is always the best choice for every child. I love to see kids with special needs in typical classrooms. I want full inclusion for both Polly and Evie. But I don't want it at their expense, to either stroke my pride or to impress other people. I think that there are many instances where a self contained or blended classroom could be more appropriate for a child. Evie is a great example. She would not flourish in a typical classroom, at least for this next year.

As much as I believe in inclusion in school for kids with special needs, I even more so believe in seeing each child as an individual. Therefore, a decision regarding school that fits the child and family and situation best is individual. Sometimes it will be full inclusion, sometimes blended, sometimes self-contained.

***

Do you have a child with special needs? What's your take on inclusion? I know this is a hot topic, but courteous, respectful dialogue is always welcome here at Pocket Lint.

Want to guest post on POCKET LINT? Now you can, with Friday Feature!!

What is Friday Feature?






Every Friday (hopefully!), Pocket Lint will feature a guest post.

There are so many great things in the world:
-Great people
-Great causes
-Great writing
-Great teaching

If you are interested in guest posting on a Friday Feature, double check the topics below, subject matter near and dear to my heart, and if what you do/want to do/should do applies at all to one of the topics, I'd love to have you.

Topics include:
-Down syndrome
-Special needs
-Adoption
-Parenthood
-Writing
-Memoir
-Christianity
-Being a pastor's wife
-Moyamoya disease (or some other life threatening illness to children)
-Chicago
-Ukraine

Don't see a topic you fit into but still want to guest post? OK, pitch me, I'm listening?

To get on the Friday Feature schedule, leave me a comment on my Friday Feature page AND email me at gillian(at)rcn(dot)com (note, two steps: comment and email :). Pitch me your post. If it is a go, then you need to have your post emailed to me by the Wednesday prior to your Friday Feature. As admin on this blog I reserve the right to ask you to change or delete something and can also opt not to publish your feature if it doesn't fit here at Pocket Lint.

If you guest post for a Friday Feature, I encourage you to do a couple things:
-Write well!
-Be open and honest
-Publicize yourself at the end of your guest post :) (facebook handle, twitter, the works, bring it on!)
-Publicize your guest post at Pocket Lint so new readers will check out my blog. (Blog about it, facebook, tweet it etc...)

I'm not sure how well this idea will take off. If there are many guest post offers, please be patient as your post may be scheduled a few months out. But if it fits for Pocket Lint, it will be published. Also, please alert me in your email if you want to write about a time sensitive matter. I'll do my best to bump you up.

Friday Feature! Yay!

Oh no, now I need someone for this coming Friday...

A glimpse of how far Polly has come

This morning as I was making beds and searching for matching socks in the upstairs abyss known as the playroom, I caught a glimpse out of the corner of my eye of a painting my mom had done of Polly in her walker.

Her little face smiles a radiance in the painting. Her chubby arms clutch the metal bars on each side of her body. I remember. She was so incredibly thrilled with herself in the little walker.

In the midst of a usual, chaotic morning I stopped for a moment and breathed in a deep breath of gratitude for Polina's progress. She walks so well now. She runs! She goes up and down our steep wooden staircase carefully. Sure, she holds tightly to the rail. Sure, she's had a few scary topples down the stairs. But she does it. She can do it.

A lot of kids with Down syndrome have hypotonia: low muscle tone. Polly was like a rag doll when she was born. Her arms and legs just hung; she was flimsy and bendy like a stretched out piece of Laffy Taffy. She's almost five years old now, and she still feels like a sack of potatoes when I pick her up.

Her gross motor skills have been the slowest to come. She started using sign language early. She had a fantastic pincer grasp. But her body did not want to move. Her legs had no interest in walking. Every new stage was work. She cried through three years of physical therapy two to three times a week.

Part of her strengthening regiment was using a stander. She was strapped into a large concoction of metal and leather straps for three hours a day. She needed to get used to standing upright. Her muscles needed conditioning. I broke up the time throughout the day; an hour first thing in the morning while she watched Signing Times, another hour later in the day during speech therapy and an hour at night before bed while her sisters read her books and danced around her stander keeping her entertained.

Her desire to walk finally came once we acquired a child sized walker. After she got the hang of it, we'd slowly walk down to the edge of the corner of the block. A few steps forward in the walker. Stop. Look around. Mumble a few unintelligible words. Keep going. The length of our block took her about forty minutes with her walker. She tired easily. She'd almost always start to cry. We took breaks. And then we kept going.

That's how it was for me, too, by the way. I tired easily trying to coax Polly into walking. Thinking about it, I almost always started to cry. I kneaded the crap out of the notion that she may never walk.

But she did. It took a long time. She was almost three years old before she really started taking steps on her own.

Now, most days, I have to catch her to help her put on a pair of socks. After a quick kiss she runs away from me, laughing and luring me into a game of tag.

I am thankful for that glimpse this morning. She's come so far. I needed to remember all the physical therapy, the stander, the walker. Not even a stroke, temporary paralysis and Moyamoya disease have slowed her down.

I needed the reminder of how far we've come. Parenting a child with Down syndrome can be heart wrenching and exhausting. It also can be magical. It gives you a deeper appreciation for little things. It can make you feeling like cheering for making it to the end of the block.

It feels good.

October 17th is a big day

Today's the day.

Last year on October 17th, 2009 I was in the emergency room with Polly after her stroke. We were scared out of our minds. Why couldn't our little girl stand up? Why was she shaking.

I was fearful and yet, Sergei and I both sensed God's presence. We knew he loved Polly even more than we did. We prayed for his will to be done.

I am so thankful it was his will to bring her back to health.

I am re posting what I wrote last year about that scary day.



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), some thing'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 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.

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.

Polly's diagnosis of Moyamoya, one year out

This morning in church Polly was fussy. She ended up with me in the service. I get nervous when she fusses after what happened last year. After a while she settled. As we stood and sang along with the worship music I couldn't help but thank God for her health.

Around this time last year (on October 17th to be exact) Polly had a stroke. She was diagnosed with Moyamoya syndrome. It was a difficult six months: recovery from her stroke, brain scans and visits to specialists and two brain surgeries to combat Moyamoya.

Moyamoya will always be a part of Polly's life, but we are on the other side of a very scary time in our lives. And Polly is doing great! She still takes seizure medication and aspirin for blood flow. She visits her neurologist and neurosurgeon every few months. But over all, she is fine.

I am thankful to God.

Three Years

We moved to Chicago three years ago fourth of July weekend. This is a picture of the girls that year. Don't they look little?

I'm surprised to still be in the same place. At Thanksgiving I marveled at the crisp deep red leaves outside my window on the Japanese Elm. At Christmas we added more lights, stringing them around the door frames and on top of the bookshelf. I knew where everything should go; the stocking nails were still there from last year. And then the birthdays, Sergei, me, Zoya, Polly, all one after another shooting me out to Target every other week for presents or supplies like a little metal ball in a pin ball machine. The end of our string of birthdays welcomed spring and now here we are smack dab in the middle of summer.

Fourth of July.

Polly (with my help) waved around her first sparkler tonight.

Three years ago Sergei and I were here on our own. We spent the weekend scrubbing down the kitchen and bathroom with bleach in ninety degree weather while Elaina, Zoya and Polly played in Grandma's back yard in Michigan.

Tonight we visited with neighbors in the alley (city life) and watched dads light up smoke bombs and fireworks and sparklers. I met a new mom, Ana.

"How long have you lived here?" She asked.

"Three years."

Three years. It's been a heavy three years; difficult ministry at first, kids acclimating to new surroundings, adoption paperwork, seven weeks in Ukraine, Evie's continued adjustment, Polly's stroke, Moyamoya diagnosis, two brain surgeries.

And yet through it all we've made this house a home, again, as we always do whenever we move. As a family we've never lived anywhere longer than three years. Sergei and I have moved eight times in twelve years.

All things considered, God landed us in a pretty good spot.

And I think we may actually break our three year rule and stay here in Chicago a bit longer. Which sounds nice, and settled.

Just what I need.

Twelve Years!

Today's our wedding Anniversary.
Sergei and I have been married twelve years! This morning when I woke up it was dark outside, a storm was heading our way. Twelve years ago on our wedding day I woke up to a terrible storm and within a couple hours tornado sirens. Our whole wedding was planed outdoors; the ceremony and the reception. Everything blew away and family and friends scrambled to regroup and start over.

By 10am the sky cleared and the ceremony was quickly set up again back outdoors. I walked down the aisle to marry Sergei with the sun shinning brightly. God rolled away the clouds. Lovely. We said our vows in Russian and it wasn't until I lived in Ukraine for three years that I really understood all the words to my commitment to to Sergei.

Everything that could go wrong on a wedding day did. My family still talks about that day, all the things they didn't even tell us about so as not to worry us. We were obliviously happy after the tornado rolled through, laughing and enjoying our guests, stopping off at a rest stop on our way to our honeymoon destination to make out, because, well, we could.

Our married life has seen eight moves in twelve years, an ectopic pregnancy, three live births three different ways; an epidural, natural water birth and c-section, the shock of Polly's diagnosis of Down syndrome and then just earlier this year Moyamoya; being missionairies in Kiev, adopting Evangeline and pastoring two churches.

For fear of sounding extremely hokey, I'll abstain from providing the usual cliches regarding my marriage (you know, my best friend, love of my live, etc..).

But I will say it's been good.

Really good.

Happy Anniversary buddy!

I'm scared of July 25th

I'm scared of a date on a calendar; July 25th.

The reason that date scares me is because it's the date that Elaina, Evangeline and I came home from Ukraine last summer after spending seven weeks there finalizing Evie's adoption. I thought that by our first year anniversary home with Evangeline we would be well bonded, in love, and that Evie would be a different child and I would be a different mother. I was talking to a dear, honest friend who is also an adoptive mother the other night on the phone. She was telling me that her mantra in her head at first was, 'Let's just get through this first year. If we get through this first year it will have to be better."

Crap.

June is almost here which means July is right around the corner and between acclimating to four children and Polly's strokes and surgeries for Moyamoya, Evangeline and I have done nothing more than a dance of two steps forward and one step back.

I realized I haven't even taken pictures of her nor the other girls recently. A part of me wants to get through this time and forget about it. I don't want pictures reminding me of the pain and struggle we've gone through in order to mold into a family of six. Most days there is still a tinge of grief.

Sometimes I am at a loss on how to love her.

Oh, we have good days... good weeks even. But overall, this whole experience has
been difficult. Really difficult. Not-what-I-expected difficult. Evie is not who I expected her to be but more importantly, I'm not who I expected I would be as an adoptive mom.

We see light in Evie's eyes. Sergei and I find ourselves watching Evie do funny things or make cute faces and we laugh. "I'm so glad she's ours", we tell each other. She's mesmerizing.

But other times, the times she eats the mop and dives for a pile of dirt on the playground and cries when I pick her up to rock her, scratching my face in order to get away, rocking herself into a stupor, I find myself frustrated, at a loss, convinced I am failing miserably. Surely, another woman could do better than me.

So many other friends who adopted at the same time are doing well.

And it makes me mad.

So, I'm scared of July 25th.

Because although we've come a long way we have a long way to go.

The switch will flip some day, right?. Evie and I will love one another better, more often, in more tangible ways. But the interim hurts. Rejections sucks. Evie and I take turns rejecting each other. And the underlying nagging pain is this: I'm the mother... I should not feel like rejecting my child.

There, I said it.

This relationship with my fourth daughter has brought a new dimension to my relationship with God. It's poignant. It's not wasted.

I am thankful for invisible fishing lure line, taunt, strong, connecting me to Jesus.

And tomorrow I'm going to try again. I'm going to pray for love and patience and therapy strategies and creative ways to engage Evie. We're going to visit a developmental therapist to see what else Evie is dealing with besides Down syndrome (I suspect she is somewhere on the Autism spectrum as well) and see what other help we can receive. I'm going to interview more therapy helpers, students who major in special education. We want someone to work with Evie and Polly for a few hours a week this summer because when I think about doing it on my own I get dizzy.

So I've admitted these things (things I can't say out loud to anyone but somehow I can write it here). I'm going to look my four girls in the eye tomorrow morning, assure them and myself of my love and more importantly of God's love and then make oatmeal and toast for breakfast.

Another day.

Tonight as Polly fell asleep she kept asking me to kiss a boo boo on her elbow.

If only everything could be fixed with a kiss...

(Note: I welcome comments... more than welcome, I actually crave validation and I know that's another issue... but anyway, if you are inclined to comment that I'm a good mom and not to worry, things will get better, thanks, but that's not really the kind of validation I seek. God bless...)

Sibshops

Today I attended a workshop called 'Sibshops' conducted by Don Meyer, a hilarious communicator dedicated to a people group that is largely overlooked; siblings of kids and adults with special needs.

I sat in a room of close to 100 people and thought about Elaina and Zoya. I listened to adult siblings talk about the challenges and triumphs of having brothers and sisters with special needs. One sister cried, saying this was the first time she has connected with other siblings in her position. She is 28 years old.

It felt good to think about my two older girls, to write down tips that can help them in their unique roles.

Polly and Evie get a lot of attention by default. But Elaina and Zoya have needs too.

I found a sibshop that meets near us in Chicago today at the workshop. Elaina and Zoya will be able to go to a group once a month, play games, have fun and connect with other kids who have siblings with Down syndrome and Autism and Cerebral Palsy etc...

After our tumultuous year: bringing Evangeline home through international adoption from Ukraine and Polly's stroke and diagnosis of Moyamoya and subsequent brain surgeries I'm the first to tell you that there were many days that Elaina and Zoya were not on my radar screen. And as a mom that makes me feel like dirt.

I'm thankful that life has slowed down enough and God has pointed out to me the needs of my two older girls. They need attention, affirmation, security, experience.

This weekend Polly and Evie went to spend the night with my mom and dad in Michigan. Sergei and I took Elaina and Zoya out to eat and tonight we went to a show Elaina was performing in at school sans toddlers. Tomorrow the girls get to participate in their very own sibshop.

What a gift to focus on these dear girls for a few days.

It's filling my soul as much as it's filling theirs. It's imperative to remember there were four lives forever changed with the birth of Polly and the addition of Evie. The experience can make us rich or poor.

I hope I can help it to be rich for our family.

Family Update

Family update time!

Thanks for your thoughts and prayers. Grandma's funeral was more like a celebration in my book. A time to remember a remarkable woman with the security of knowing that she is in the presence of God.

Now on to the updates:

Elaina is doing better with her sleep. We've seen a sleep psychologist twice. He gave Elaina some good ideas about relaxing and preparing for her night of sleep. But really, most importantly, I think he gave her a platform to talk openly. This last year has been tough on our oldest. She's nine and for some reason she has decided she is really eighteen.Elaina was in Ukraine with me for seven weeks for Evie's adoption last summer and was the eternal optimist the whole trip. Once home, she adjusted to life with another sibling and then Polly's Moyamoya diagnosis came along. Lainie internalizes everything and I think it's all been a bit much. "It feels so good to get everything out," Elaina said during her first talk session with her sleep doctor.

I think Elaina mainly needs to know that although her little sisters take up a lot of our time and energy and focus, Sergei and I are equally there for her and ready to help her with her problems.

Elaina has so many wonderful qualities, especially empathy. I am thankful to have her as my daughter.

Zoya is doing well. She sleeps like a log (one out of four ain't bad). A few months ago she was having some problems with reading and writing in school but recently she has pulled up her grades and is quite pleased with herself. She turned eight in March and celebrated her birthday in Michigan with her Grandpa who has a birthday the day after. Zoya is still in to science and math. She is starting to really enjoy reading and I see her becoming more of a team player at home. Zoya is strong. She's courageous. She's always thinking. I love her.

Polly is growing up! Her surgeries for Moyamoya have not slowed her down...instead we've seen another jump in her cognition. She answers who and what questions with three and four word sentences. Whenever a candle is lit (which is a lot b/c I choose to light candles when company comes over instead of cleaning), she insists that we all sing 'Happy Birthday.' She so wants to blow out the candles. Ironically, due to my grandmother's passing we haven't gotten to her official birthday party yet. But our cutie doesn't mind!

Besides a little wobbliness, Polly does not seem to have any lasting effect from her strokes and seizures. She's still on her seizure medications and takes an aspirin every day to increase blood flow. She makes our whole family laugh out loud. The other day Zoya was coughing and Polly leaned over and said, "Zoya, no cough on me."

Polly amazes me. She is the light of my life. I remember the fearful mother who gave birth to her four years ago. She was a measly five pound raisin. A child with Down syndrome. A plague on my life.

I was so very wrong. I am humbled.

And Ms. Evangeline. We've seen progress with Evie, mainly in bonding. It's hard to admit how difficult our first months with Evangeline were. Many times I questioned God. "Did I jump the gun on this one Lord?" "Was bringing this child home really part of your plan for our lives?" Sometimes I wanted God to tell me yes, that I got it all wrong. That I really wasn't supposed to love the person rocking in the corner eating her own hair.

But that's not what I heard. Over and over, through scripture, through others and through my daughter, I heard God telling me to trust him and to open my heart to Evangeline regardless of her response to me. He reminded me that I too was an orphan adopted into his family, that love on this side of eternity isn't perfect and usually isn't pretty. It's messy and complicated...it takes sacrifice...but nothing compared to what Jesus has already done for me.

So I pushed through, loving Evie outwardly when inside I was screaming for help. Sometimes my heart attitude leaked out on to my youngest daughter. I'd be mean in tone, or put her to bed too early, pay more attention to the other girls.

With help from other mothers who have walked the adoption road and through prayer, God has showed me that Evie is worth my attention. We started spending more time together. I'd swaddle her like and newborn and rock her and sing 'Jesus loves me.'

And magic started happening. Evie looked into my eyes intently with love.

And after a while I was able to reciprocate.

Evie loves school in the morning, she joins in with her sisters at play, even if that just means she moves to where they are. But most of all, she seeks Sergei and I out. She laughs when we pick her up from school and she smiles and raises her arms to us when we get her out of her crib in the morning.

We haven't seen a lot of cognitive growth in Evangeline since we've brought her home.

But we have love now.

And somehow, stacking blocks and reading books or lack thereof does not matter anymore.

She's our daughter.

That's all.

Sergei and I are overwhelmed, thankful, a bit freaked out and tired. Our church is growing which is both wonderful and brutal. Our whole married life in ministry has been with small groups. Now we have 80-90 people on a Sunday morning. 80-90 people that we love. We take ownership. We pray for them and try to be there for them. Sergei's also still plugging along in his Master's degree in Church History. This semester he did two classes which was a bit much (don't tell him I said that).

Five years ago I was in Kiev, Ukraine, speaking Russian comfortably, attending our house church, making open-faced meat sandwiches, wondering how schooling and ministry and life really was going to work in a foreign country for my children and for myself.

Now I'm here, in a house for the first time in my married life, a part of a church filled with real people who love God, partnered with a husband who loves his job; loves the people of his church and loves his family. I write. I pray. I make macaroni and cheese.

I have family close by and family over the ocean whom I miss.

If we are honest, I think life is usually overwhelming. But I'm not alone in that, right?

I am thankful for health; for my kids and my husband. I have friends on my street and friends from childhood who still care.

What about you? What's your update?

Happy Birthday Polly girl!!

Good news for Polly

Today Polly and I went for her follow-up quick MRI and to see her Neurosurgeon.

We waited for almost an hour and a half for an MRI that lasted three minutes. But it was worth the wait. Her surgeon said everything looks good, there's no extra fluid and she is healing nicely. In six months we go back to Dr. Alden for a check-up and for another quick MRI and neck x-rays. At that time they'll decide to do another angiogram or wait a few more months. The angiogram will either prove or disprove new blood flow created by these surgeries.

So as it stands, Polly still has Moyamoya and she always will. Yes, she is staying on seizure meds and aspirin and yes, we are always on the look out for stroke and seizure activity. But, God willing, new blood flow can organically start anytime and our prayer is that it's sooner than later and that our girl won't have to struggle through any more episodes.

Please pray for Polly as she comes to mind, for new blood (not having anything to do with the Vampire rage these days).

We also have to keep Polly away from any major activities for the next three months as she heals (like, downhill sledding).

Between the MRI and the doctor appointment Polly and I had time for a quick lunch together at a cafe. Polly munched on chips and french fries (healthy, I know!) and gulped down juice. We talked about the snow and about the possibility of some snowman action this weekend. She babbled on about Evie and Lainie and Zoya and I smiled. A lot.

It was our first Mommy/daughter date. She was excited to do something with me on her own like Elaina and Zoya.

My heart is full.

Amazed

All four of my daughters are soundly sleeping in bed. The house is quiet, the hum of warm air pushing through old, cold pipes the only sound.

It soothes me.

I can't believe that Polly completed her second surgery this week. She came home today and after dinner was already 'shopping,' walking at the speed of a jog with plastic bracelets jingling on her wrists and a Blues Clues purse swung over her shoulder. Along the right side of her face from her ear up to her temple a sewn crimson incision is stitched with fine thread. The healing process already in full swing. Eventually it well match they faded scar on the other side of her head from the first surgery.

Two days ago my daughter was put into a deep sleep while a capable surgeon sawed through her skull. He found healthy arteries to replace those that had thinned and attached them to her brain to create new blood flow, stuff that will help her to think; to learn her ABCs and how to do math, as Sergei and I ate salads in the hospital cafeteria. The surgeon tonight, the guy with a firm handshake, the one I trusted to help my child reach out for her potential, in all likelihood is having a late dinner with a loved one or watching a mindless movie with a drink in his hand.

And Polly's smile is back. She became more and more herself at the hospital today, asking after her sisters and apologizing to the sweet nurse for crying when her IV was removed.

On October 18th Polina had three seizures and a stroke. On October 19th after a day of testing; an MRI and an MRA, an EEG, no food, no sleep, we learned that she was not only born with Down syndrome but also with Moyamoya disease. A syndrome that thins arteries in her head to the point of strokes; if untreated, a debilitating disease and scary as hell.

Today Polly is home. With God's help, a ton of prayer, baked Ziti from friends and play dates for the other children, the gift of modern medicine and a renown hospital ten minutes down the street, Polly not only weathered the storms of two brain surgeries and what they entailed but she treated it all as a mere vacation...a time to get away from every day life and catch up on back to back Caillou episodes, cuddles with Mama and Papa and all the apple juice and pizza she could stand.

Tonight as she sleeps I feel like my recovery is going to take longer. I have to process God's provision, his unbelievable care for his children, being in the right place at the right time for Polly's distinct needs to be met. And other, more subtle things like my own mother who gives up her life for weeks at a time to come and fold my underwear, love on her granddaughters and wash the kitchen floor on her hands and knees and my husband, who does every night shift at the hospital so I can have a good night's sleep in my own bed because he loves me. Friends calling just because they care and our girls, those amazing creatures who get upset about the wrong cereal bowl and pull each other's hair... girls who are being molded by these experiences, God-willing, into people who not only understand the gift from God in Jesus, but who actually believe it for themselves and not just to please their parents.

I'm not sure what people without faith in God do in times like this? I suppose they muster up energy and ability and focus all the good vibes and thoughts they have towards a positive outcome.

I myself am so unbelievably thankful that stuff like this isn't left up to chance or to my own strength.

My daughter is sleeping soundly in her bed at home tonight.

I am amazed.

We have lift off

I'm sitting in the surgery waiting room at Children's Memorial Hospital. Polly has been in surgery for a little over an hour and a half. The whole procedure should be about three hours. After we saw Polly off Sergei and I got some lunch in the cafeteria. I always stare at other seemingly parents and wonder what their kids are in for. I can't help it.

When you hand your child over for a major surgery (or any surgery, for that matter) it's like lifting off in an airplane. Things are completely out of your control and as a mother you've just got to breathe out a prayer and trust the pilot.

I did ask Polly's neurosurgeon this morning when he stopped in to see us if he had a good night's sleep.

Apparently he did.

Will update later.

Surgery at 1:30pm

Polly's second surgery for Moyamoya is today at 1:30pm.

Please be praying and I'll update later tonight.

Thanks!

Evie's EEG, Polly's insurance, Elaina's night terror and my sanity

It's been a couple busy weeks.

Last week we had four doctors appointments; Polly saw her neurosurgeon and got her stitches out, Elaina went to the allergist, Zoya needed her second H1N1 flu mist and on Friday Evie had an early morning EEG to check for possible seizure activity.

Evie does this thing where she clenches her arms up by her head and rolls her eyes back. She does it about five or six times a day. Even though these episodes could be behavioral we decided to check it out. We don't have a conclusive medical history for Evangeline and we haven't seen that much cognitive gain with her. I'd just hate for there to be something going on that can greatly alter her potential and not have followed up on it. So on Thursday I kept Evie up until midnight and then Sergei woke her up at 4am. They want her to be sleep deprived for the test.

Of course, she didn't fall asleep during the test at 7:15 am at the hospital even though the sweet tech and I did all our tricks to get her to snooze.

We received the results a couple of days ago which were normal (and that needs to be taken with a grain of salt b/c she didn't sleep). Our pediatrician wants us to get in with neurology and see what they have to say about the test and about Evie's behavior. So we'll see what we are doing with all that...

Elaina is not allergic to anything. We spent almost three hours at the allergist to obtain this information. After our trip to Ukraine this summer to adopt Evie (she stayed with me in Kiev for seven weeks), Elaina has complained of fatigue. Her glands in her neck are swollen a lot and she has bags under her eyes. Her ped treated her for a sinus infection with an antibiotic for ten days but it didn't help. She also had a full bloodwork up done and everything came back normal. So we were referred to an allergist and an ENT.

A couple weeks ago Lainie started having trouble falling asleep, which at times has escalated into two hours of screaming at the top of her lungs. She's nine years old and personality wise, is quite high strung and emotional. She's also compassionate, smart, helpful and happy most of the time. We've done back rubs and hot baths, tea, later bedtime but nothing seems to help. She can't fall asleep and she gets so frustrated...poor thing. Today we go to the ENT to see what he has to say about her glands. If anyone has any other suggestion to help Lainie, let me know.

So that was last week.

This week we've been on the phone with our primary insurance. They contacted us in the beginning of the week to let us know that Polly had reached her lifetime limit with her policy (read, they won't pay for anything else). Nice. And she has her second brain surgery for Moyamoya next week. Recently our insurance had to change to a lesser plan b/c we still are insured with our mission that sent us to Ukraine but support keeps dropping. This insurance is strictly medical and has a cap.

But Sergei and I thought it would get us through these surgeries as we figure out what to do next.

I guess not.

The good news is Polly does have secondary insurance through Illinois ALL KIDS and it's been confirmed that they will pay the claims if our primary declines. Ugh. So after phone tag and worry I think we are still on for Polly's surgery next Thursday, January 21.

At least Zoya got her 2nd flu mist without incident. That's something.

With all this going on I get overwhelmed pretty much every day. And then I hear about something like Haiti and it all gets put into perspective.

My friend Mel said something profound Wednesday night at home group. She said that you may not remember what you had for lunch last Tuesday but you know you were fed.

In busy times like this I may not comprehend everything that is going on in our family and I may not be getting things completed, I may not be praying enough, or paying attention to all four kids equally or folding laundry and getting it put away in drawers. But I know we are being provided for, that God cares and that we are doing alright.

I know we're fed.

Christmas

I really needed this Christmas.

These last few days both with our church and with family have been like a thick layer of balm on our chapped lives.

Things were already looking up when Polina surprised us all by bouncing back from her indirect by-pass brain surgery for Moyamoya like a champ, basically strutting down the hallway and out the hospital door last Sunday morning. She came home happy to see her sisters and asking for pizza. Her recovery from this huge surgery amazes me. And the peace God gave Sergei and I encourages me. I dare say we're ready for round two (her next surgery is scheduled for January 21).

We had a beautiful service on Christmas Eve and had a few friends over afterwards to toast Jesus. On Christmas morning Elaina and Zoya woke the rest of us at 7am. Downstairs the girls were instantly buzzed by mounds of wrapped shinny gifts holding magical mysteries, Sergei brewed a quick pot of coffee and we gathered around the tree for a little bit of reading and prayer.

Presents were opened and we spent the rest of the day at home tinkering with new toys and gadgets, snacking on cinnamon rolls and playing Wii tennis.

I couldn't help but watch my children intently all. day. long.

My presents were appreciated; a candle from Zoya, bubble bath from Elaina, comfy jammies, a yoga mat and a crock pot cook book from Sergei. But my real gifts were unwrapped in my mind throughout the day; health and happiness. This weekend I decided to stop and look around and breathe.

OK, so we are in the midst of brain surgeries and pending tonsillectomies. Elaina is tired all the time and Zoya's eczema is bizerk lately.

Evangeline has yet to see all the specialists required; she really needs to get in to see a pediatric dentist and most of the time her eyes still look sad. She spits and pulls hair and bites. I can't read her cues and at night when I lay down to sleep I worry that I'm not doing enough.

Last year I sheepishly hung a stocking for the little girl we hoped to bring home from Ukraine. This year Evie is here, suspicious of the antics of her sisters and less than interested in her toys... but here. She seems more present too, passing out (albeit sparingly) hugs and cuddles, smiling here and there.

And tonight she let me rock her to sleep for the first time.

This weekend we had health and happiness. Sergei cooked a wonderful Christmas dinner, Zoya is turning out to be quite the little athlete. Elaina includes her little sisters in her games, is thrilled with her new outfit and text messaging gadget. I made high score on the Bop It (100, if you care to know). Polly loves her new caillou doll and her incision is healing nicely. Evie decided she likes animal crackers and has moved into a booster seat at the main table.

Health and happiness. One day at a time.

Merry Christmas.

Polly's HOME!!!

And she's doing great!

The doctors came to see her early this morning and everything looked very good. They said that she can go home and the surgeon will see her in two weeks to check the wound and schedule the next surgery.

Polly was excited to get dressed and walked all by herself down the hall and out to the elevator waving and saying 'bye' to everyone she saw.

The feeling of peace has been overwhelming this past week. So many people spread the word asking for prayer for Polly. Sergei and I are thankful and we praise God for bringing Polly through this surgery so well.

So what now? We rest up and Polly continues to heal and we gear up for surgery #2, probably mid January.

My Christmas list only has two things on it this year: Health and Happiness. I pray for health and happiness for all four of my daughters but this year, specifically, I ask God for Polly's continued health and ability to handle huge things like brain surgery with strength and ease. I surely desire for our kids to be happy day to day but this year my prayer is for Evangeline to be happy in our home. I am praying that the Lord binds us together and that she feels comfort, unconditional love and joy.

I'm experiencing a little bit of Christmas this morning as Polly sits in the kitchen eating goldfish crackers and drinking apple juice.

Day 3 post surgery

Polly continues to improve. All cords are removed except for her IV for liquids and this afternoon they moved her out of ICU into a typical recovery room.

The left side of her head has started to swell and now her left eye is almost completed closed. According to her doctor it's common after this kind of surgery and should go down in the next few days.

Polly's spirits are high but she is getting bored. She really didn't need any pain meds today.

Someone asked how we are doing. That's a tough question b/c I am so exhausted I can't really put a thought together. I think Sergei is probably more tired than I am. He is pursuing a Masters Degree in Historical Christianity and this week he had two finals and a twenty page paper due. Not to mention a full work week at Church and a sermon to prepare. Oh, and his daughter's surgery. We are both tired. Tonight when he came up we talked for a few minutes and I left. It didn't occur to me to stay and visit, all I can think of is getting home and getting some sleep. I guess he and I will catch up next week.

The other three girls left yesterday to spend the weekend with my parents. We are very thankful for help so Sergei and I can concentrate on Polly and split up our time at the hospital. I'm doing days and Sergei comes up after a work day to spend the night with Polly.

It's working out, I think, but I do worry about Evangeline being away from both of us for a few days. She absolutely LOVES grandpa and I know they are taking great care of her. I just worry about my own bond with Evie. It's still so fragile. I'm finding it difficult to focus on all four girls right now and I hope that once Polly's home we can have a few weeks of normal (whatever that is).

Pray that our relationship with Evie won't regress during our separation. And of course, we'd love continued prayers for Polly's recovery.