Posts filed under ‘Birthdays’
and I saw the inside of my daughter’s brain on a computer monitor.
Yesterday, Polly, Sergei and I trekked off to Children’s Memorial Outpatient Clinic on Clark Street to meet with Dr. Alden, Polly’s Neurosurgeon. His full name is Tord Alden, which sounds really smart to me. A good sign.
I was surprised that Polly’s blood vessels are quite thin on both sides of her brain. Her Moyamoya is more advanced than I thought it would be. The angiogram took pictures of how the blood actually flows for Polly in her head and unfortunately, it’s not flowing much. Dr. Alden also pointed out three or four spots on each side of her brain that had gray clouds. These areas are from past strokes. Unbelievable! Our baby has had multiple strokes and we didn’t even know.
It breaks my heart. As a mom I expect to know when something is wrong with my kid. I count on that internal mother intuition that usually clues me in on ear infections or when someone is about to puke.
But I didn’t catch the strokes…
Dr. Alden talked us through the surgery, an indirect by-pass. I’m not going to act like I completely understand his explanation but I think he told us that they will cut out a piece of her skull, find a large artery and actually place it on her brain in order to create new blood flow. Again, referring to Dr. Scott’s (out of Boston Children’s Hospital) explanation:
We separate this artery from the tissues around it, keeping blood flowing through it. We open up a window of bone beneath the artery, and then use a microscope to carefully open all of the coverings of the brain right down to the brain surface. The artery is then placed directly onto the brain, and the tissues around its walls are sewn with tiny sutures to the brain surface to keep it in contact with the brain. Then the bone window is replaced securely, and the skin incision closed. In some patients, we may also place an extra small hole (a “burr hole”) in the skull away from the first incision, and at this hole we also make tiny openings in all of the coverings of the brain before closing the incision.
Dr. Alden at Children’s prefers to do each side of the brain separately, a month apart. He also said it is imperative for us to wait four to six weeks after Polly’s stroke for the first surgery. Her brain needs to do what it will to heal itself to diminish chances of bleeding and infection during the procedure.
The first surgery is scheduled for Friday, December 11th. There will be about an hour and a half of cutting, add in anesthesia and waking up etc… we’re looking at 3 hours for the whole process. Polly will definitely spend the first night in ICU and afterwards she’ll either be sent to another floor to recover or if she is doing really well, she may be able to go home the next day (WOW!).
So here is where I’m at personally with all of this:
Firstly, I thank God that even though Polly has had strokes in the past, he has kept her functioning well, without any residual damage from her little body’s upheaval to date. Her most recent stroke (the one I saw) left the most damage to her right side (likewise, it occurred on the left side of her brain) and she is recovering beautifully. If anything, the stroke has knocked a bit more of a sense of humor and sassiness in our girl. And we’ll take it! Someone reminded me today that God loves Polly even more than we do.
Secondly, of course, I’m scared. My time is spent breathing in and out prayers for Polly by day and on my knees next to her bed at night. Every time I hear a thud or a cry my heart sinks. I guess it’s human nature (at least for a mother of a child with special needs) to expect the other shoe to drop, for her to have another stroke pushing this whole process back or even worse, really messing her up. It’s exhausting, honestly. I’m forgetting to RSVP for birthday parties for Lainie and Zo and there is a constant nagging thought in the back of my head that I’m forgetting something. This morning I swiffered the dinning room floor with a baby wet-wipe and was thrilled that enough energy was mustered to clean at all. I’m not doing anything well and yet, by the grace of God, time is going by, like it always does.
Thirdly I’m spurred on to live day by day, ticking dates off on the calendar in my mind; another day Polly gets through without incident; a gift. This strength is gathered from my relationship with Christ, the Bible, my rather funny and very attentive husband, eskimo kisses from Lainie, Zo and Polly, warm smiles and chuckles from Evie.
Strength and encouragment comes from the most unexpected places as well. A mom from Zoya’s class emailed this morning. She excused my lack of RSVP-ness and went a step further inviting Elaina to her daughter’s party Saturday which will certainly break up our weekend. Sergei will be gone for his back-to-back six hour class Friday and Saturday on Patristics.
This kind of stuff keeps happening…a meal or a bouquet of flowers on my doorstep, friends on our street inviting my older kids over for playdates. Therapists making up missed appointments and ladies from church come over and watch our kids so Serg and I can go to Polly’s appointments together pro buno, even though they could use the money (couldn’t we all?) Emails and facebook comments, people (both friends and strangers) join their names to so very many in prayer for Polly during this challenge.
And this morning as I picked up Polly from preschool a little girl walked up and handed us a birthday invitation. The little girl’s mother and I locked eyes and before I realized I was talking I thanked her and said,
“When she was born I wondered if she’d get invited to birthday parties…this is her first one, and you guys are going in her baby book.”
The mother started to cry, Polly’s loving teacher Ms. Baba (Barbara) had tears in her eyes and ten little preschoolers continued to run circles around us completely unaware that God’s grace was happening right there, right then. He was showing me once again, His love and care.
We’re here and today, thanks be to God, we are alright.
(Polly at three months old)
I remember the first time a therapist came to our home. Polly was nine weeks old and just over ten pounds. I was unsure about someone coming into our living room and working with my little baby and scared of Polly’s diagnosis. I made eye contact with the therapist often, trying to guess what she thought about Polly, trying to figure out what she thought about me.
As the months passed there in St. Joe, I treated therapists like bartenders. It was like every week I was throwing down my cash on the bar counter (by letting them work with my kid) and then in turn they had to listen to me process Polly’s diagnosis through research on-line and question after question about her progress in her sessions all the while communicating just how unsure and frightened I was in the new role I found myself in.
Polly has worked with over twelve therapists in the last three years both in Michigan and in Chicago, at home and in a center based therapy settings. She has laughed and played and cried and screamed and yelled and kicked and held hands and played ring around the rosy. She has hugged and kissed and hid and helped for three years.
I’ve done all that too.
Time passed and I slowly morphed from a frightened new mother of a child with special needs into a knowledgeable mom, ready to fight for her child’s rights, aware of the latest therapy and treatment options, up on the newest medical check list pertaining to Down syndrome, watching the therapists like a hawk to ensure the best therapy for Polly and head over heels in love with my little girl.
Just recently, in the last six months I’ve gotten comfortable sitting in the other room during a session, working on the computer or even at times reading a magazine but really still listening whole heartedly to my child’s session in the other room.
And today it’s done. Next week is spring break for Chicago Public Schools and then Monday, April 13th Polly will go to preschool, three hours a day, five days a week.
All her therapy will take place at school.
I remember thinking that these early years with Polly were going to take forever, and that indefinitely my life would revolve around her therapy needs. But really, therapy did not become our lives. It just became a part of our life, the new norm for our family.
And the 0-3 years are done.
In college I worked a stint as a custom service representative for Sears. That’s a fancy way to say that I was in Telemarketing, which meant eight our Saturdays sitting in a cubicle making phone calls about tire service.
The script is still fresh in my mind. I could pick up the phone this afternoon and do a perfect customer service phone call:
“Please listen carefully to your options and then answer… Did the service…
1. Exceed your expectations
2. Meet your expectations
or 3. Did not meet your expectations.”
My baby is growing up. My baby is growing away.
And I am so very proud of her.
So far my life with Polly has 1. Exceeded my expectations.
(Polly’s last therapy session at our house four days before her third birthday)
…We might get to take the older girls with us to get Evangeline. They would just stay the first two weeks with Sergei and come home with him. Then I’ll stay another three or four until everything is complete. The funding is almost there to do it!
We are waiting for one last paper and then the beginning of the end will start. We’ll ship our dossier to Ukraine and wait for a court date.
In other news: Zoya is having a puppy dog 7thbirthday party tomorrow. Her actual birthday is Sunday. It’s puppy dog b/c that was the motif in abundance at the Dollar General and I could pull it off still with her as something cool. So the eight little girls at the party are getting their faces painted like dogs, we’re serving cocoa puffs in brand new dog bowls and the entree is hot dogs, of course!
In other news: Sergei and I are going to a Gala Saturday night. It’s a large fundraiser for school. I am intimidated at such things but my friend Amy gave me great advice: come an hour late. That way, everyone will have already had a drink and there will be so many people there we will just blend in. She said it’s easy to live early that way too. Oh, so wise, Amy!
In other news: Polly’s birthday is next weekend, April 5th. She is having a My Little Pony party b/c that was the motif in abundance at the Dollar Store three months ago. I bought all the loot and put it down in the basement and am now trying to conjure up the needed energy to actually invite a bunch of three year olds over for another party so soon after Zo’s. Polly could care less, really but I do have the stuff. Hmmm…
In other news: After Polly turns three she will start preschool five mornings a week in a blended classroom four miles from our house. She can even take the bus if need be. Whoa. I think we’ll drive her thanks.
In other news: There really isn’t any news about Elaina right now except that she has made folding the laundry her job and to date has folded four loads of laundry and placed the clothes on each person’s bed to put away. It’s like Christmas for me every time she does it.
In other news: Sergei is doing well. He started another class last week, chipping away one class a semester at a Historical Christianity Masters. Funny, the guy dresses up in a suitcoat for class, for the zoo, for walks but not for Church when he’s preaching. He’s so edgy! Also, He brought me a dozen yellow roses the other day for no reason. Wow!
In other news: I am making time to write now. There are a couple essays in the works and I am making plans to try to publish some things. It feels good to do something outside of mothering and adoption and therapy and church. Also, I am dying without coffee and am counting the days until Lent is over. I know, very spiritual.
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.
Polly is two today. Happy, happy birthday, baby!
I am a bit tired from the party…but will post something more substantial later.
But for now, if you’d like to see her year in review, click over to my montage here.
Let me get this out there right away:
Happy Belated Birthday to a faithful Pocket Lint reader, MY FATHER!
His birthday was on Sunday, a day after Zoya’s. Six years ago, as I was near the end of my labor with Zoya, he called asking quite nicely if I would kindly wait another half hour so that he could share birthdays with his fifth grandchild. But Zoya came in her own time, and I am still thankful today that she was forty minutes shy of the afore mentioned birthday buddy.
It’s pathetic, but true. I am bad about birthdays. And it’s not even so much that I forget about them…I just don’t do anything about the birthday except most of the time think nice thoughts, maybe say a prayer for the person, or tell S at dinner “today is so and so’s birthday.”
The four years I lived in Ukraine turned me into a terrible communicator.
In Kiev, I hardly ever talked on the phone. I found it difficult to speak Russian without seeing the other person. And really, having less friends, I didn’t have many people to call. I was home more often, exhuasted from Russian and walking, and working on my scowl.
The distance across the ocean was like a get out of jail free card when it came to holidays. It was as if the actual miles allowed me freedom from birthday greetings, Christmas presents and Mother’s Day cards. I just didn’t worry my pretty little head about those type of details in the midst of learning how to say “Dietye menye kartoshka” (give me some potatoes).
I got used to talking less. I read books. I journalled. I watched people around me.
I became a tad anti-social.
So now I’m back in the States. Anti-social doesn’t fly when you are two hours away from extended family and friends. People who had already kissed goodbye the idea of proximity and punctuation, seeing my children open their presents on Christmas morning, lengthy phone calls about nothing in particular.
I have hurt some people by my lack of communication, in essence, communicating my neglect. Thankfully, important people in my life have learned to just call, or email, or comment here. I am honestly very happy, and usually still a bit surprised, to be in touch. I guess I never thought that culture shock would be reciprocated here in the States.
Actually I thought myself quite sly, since last week I went on-line and picked out a book (sorry, Dad, if you haven’t gotten it yet, and now there is no surprise… again, Happy Birthday!). S heard a discussion about the book on the radio and thought my Dad might like it. I clicked ’purchase item’ and that was it. Birthday complete.
Sunday came and went, and today, while standing in a toy aisle at Target, I called my Dad’s cell, to talk to my mom nonetheless about birthday presents for Polly. Tonight, I realized that in the pleasantries exchange with my Father, I forgot to wish him Happy Birthday.
Too little, too late. But wanted to offer it anyway.
And that goes for all the other people who did not hear from me on their Birthdays this year.
I am culturally confused.
Tomorrow Zoya will turn six years old. Her friend from Michigan is coming to spend the night with us in honor of the special occasion. I bought presents, and cupcakes, white and chocolate with colored sprinkles on top.
In the evening I will blow up balloons. Elaina will help me hang decorations, the obligatory ‘Happy Birthday Sign’ that has travelled from home to home with us through the years. Every year it dutifully turns up at the right time and never hesitates to be tapped up against cold glass.
Some days I cannot believe that I am mothering three girls. Each girl is so different from the next. And therefore, albeit subconsciously, I mother them differently. They are growing up, in spite of me.
Zoya is quiet. She can be easily talked into a nap on any given Friday after a long school week. Sometimes if she gets really bored she decides to go to sleep. This last year she got glasses. The other day she said she forgets that she is even wearing them.
Now her ears are pierced. The offer has been on the table for a while, but just last week she decided it was time. I helped her up onto the high stool, she held tightly to a white stuffed bear wearing a red bow tie. She mentioned she was a little scared, we starting singing ’Happy Birthday’ and by the time we got to the second syllable of birthday, it was all over.
She is tough, and private, and kind.
Zoya kept closer to me longer, but I don’t think it was because she needed to. She simply wanted to. Her six years has shown her different beds to sleep in, numerous plane rides, and foreign languages. When music plays her foot taps naturally to the rhythm. Her arms are graceful. She has her Papa’s eyes. Often, you will still find her curled up in my lap. No complaints here.
I’ve learned to slow down as her mother. We enjoy reading books together. She likes it when I tuck the blanket around her small body as I kiss her goodnight. Her best friend is a tattered cotton pillow…it’s difficult to make out the characters on the fabric after so many washes.
She’s made friends with a little guy in her blended Kindergarten class who has special needs. Today her news was that her teacher moved her to his table. They like to play tag together at recess.
When she decides to do something, it’s done. At two she was potty trained. All it took was an ‘I can pee’ doll and a few soft drinks. She never looked back.
Happy Birthday to my middle little one. It’s a privilege to be her mother.