Posts filed under ‘Special Needs’
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)
Elaina and Zoya both have new haircuts.
Sergei and I try to spend one on one time with each kid here and there. My focus has been mainly on the adoption these past four months. My kids understand generally and we are all in this together to get Evie home but it still is important for them to get our full attention, at least once in a while.
So we do dates. Me and Elaina at Panera Bread. Serg and Zo at Dunkin Donuts, Me and Zo at a cafe, Serg and Elaina at Starbucks. And we spring it on them. “Guess what? Tonight mom is taking Zoya on a date!” And away we go. We also go on family walks after dinner, read together, eat dinner together as a family almost every night. Most recently each girl had a turn to go with me to get a haircut.
When I’m with one of the girls I try to see how she is doing in general. We talk about school and the adoption, about what they want to be when they grow up (and I might add, these conversations are very entertaining); about shoes or books or music.
There have been a few comments made, either to me or indirectly, about peoples’ concern for our kids regarding the adoption. Some people think that adding another child with disabilities to our family is unfair to the children we already have.
These comments hurt.
But then I have to step back from that hurt and hear what is being said and actually think about it, for all of our sakes.
It would be dishonest to say that Polly’s needs and schedule do not take up a lot of time. It would also be dishonest to act like there is no fear about bringing Evie into our family.
I have felt guilty this year because I’ve only been in Lainie and Zo’s classrooms once each, I never think to set up play-dates, I have no idea who is the room mother for each class.
I think about how it will affect Elaina and Zoya and Polly and Sergei and me to add a sixth member to our family. I think about physical therapy, occupational therapy, developmental therapy, speech therapy, doctors visits, hearing checks, fittings for glasses, ordering orthotics, IEPs times two. Doing all that we’ve done with Polly again. Everything from here on out X2 as far as therapy life goes. Everything from here on out X4 as far as kids go. I do think at times, just like parenting any child, it will be difficult.
When Sergei and I were praying about adoption, before we committed to anything, our kids knew. They prayed about it with us.
We talk about Down syndrome a lot in our house. And Elaina and Zoya have enjoyed the company of many different individuals, various ages and functionality, who happen to have Ds.
Although I don’t volunteer in Elaina’s class like the inner mommy tells me to, I was in tears at her parent-teacher conference, hearing words like “compassionate,” and “thoughtful” being said about my daughter.
“Mrs. Marchenko, Elaina is a joy to have in class. She is always looking out for the underdog and makes sure that everyone is included at all times.”
I remember what I was like in 2nd grade. Words like ‘compassion” would not have been equated with me. In my elementary years, I painfully tried to fit into my new school (my family moved across the state my 2nd grade year). My best stab at fitting in, that is, take the focus off of me, was to ridicule someone else. Usually someone who was slower or un-coordinated or had orange hair or smelled strange. Someone everyone else picked on for being different.
Elaina’s and Zoya are growing up another way.
I sat there, squeezed into the tiny 2nd grader plastic red chair at my parent-conference, trying to hold it together, my heart gushing with thankfulness to God that he is teaching my children at the ages of 7 & 8 what I’ve had to learn in my 30s.
At times, our lives are difficult. At times our lives will be difficult.
I have no idea how I will manage four children daily. I am starting all over with another child with low muscle tone. Who isn’t walking. We may need to use the stander. We’ll be ordering orthotics for Evie and getting her heart checked. There’s possibly another tonsillectomy in our future. And depending on how life goes she may live with us in her adult years. Her sisters may step in at some point and help her and Polly out in life as need be.
But I know God has called us to adopt this little girl. And I believe in my gut that what He has for us is good. He’s called all five of us…Sergei, myself, Elaina, Zoya and Polly to adopt her as a daughter and as a sister.
And that’s my stake in the ground.
God willing, next year around this time, I’ll be writing posts about four hair cuts, about fitting dates in with four little perfect creations that God has asked me, for a time such as this, to mother.
I am sitting next to one fitful little girl restlessly sleeping.
Thank God, her surgery went well without complications. The doctor removed her tonsils and adenoids (they had grown back from two years ago). Her ears were clear so no tubes today!
I can’t explain what it’s like to hand your child over to strangers and then walk downstairs to the basement to get an Egg McMuffin.
But it all went quickly and before I knew it Polly was back in my arms and we were nestled into a private room.
At least we got something out of her fussing so much.
I’ve spent over six hours in her hospital bed, the only way she wouldn’t cry and keep the oxygen tube near her face.
Now her sleep is even, the oxygen tube is pushed to the side (per the nurse’s instructions) and I marvel at the fact that here we are again; Polly and I in the hospital, except this time it will be two days instead of twenty and it’s America instead of Ukraine (and I LOVE her nurse today; I feel like giving her a hug every time she enters our room). I am neither in emotional nor physical pain and whereas I couldn’t imagine life with my new little baby almost three years ago when I sat with her day after day in the hospital, now when I look at her my eyes tear up.
I can’t imagine what life would be like without her.
I have given birth three times in completely different ways.
The first time was the easiest. I had an epidural. The birth was pain-free. Soft music played in the background, the doctor on call was a little miffed to be woke up in the early morning and took out her aggression on the chipped red polish on her nails. I breathed deeply and pushed with all my might three or four times and we had our girl.
The first six months of Elaina’s life she cried seven hours a day and I sat on the couch in our little Chicago apartment and waited for Sergei to come home from work, beside myself, convinced I was the only woman in the history of mankind who did not possess an innate mothering intuition.
Zoya’s birth was long and painful. I let a friend talk me into a natural water birth and the pain was like none I had experienced before or since. I lugged my huge body out of the tub, down the hallway and back to my hospital bed in the hopes for some last minute drugs, a towel draped over my shoulders.
Only Zoya could not wait. She shot out of me while I stood next to the hospital bed, one leg hiked up on the mattress. She was caught like a football by my mid-wife, her robust cry filled the whole hospital floor. I fell into bed, oblivious of new life, a black haired, swollen little girl. My second daughter.
They say that as soon as a woman bares her child, she forgets the pain and struggle of the labor. Because she gives birth. She actually delivers a life. I have given birth three times. But the last time, I feel like I didn’t actually give birth. I think it was taken from me. I do not remember the third birth experience.
I have to make up the first few moments of my third daughter’s life.
And I imagine silence.
I imagine the baby, blue and tiny, doctors scurrying around the room, hooking her up to monitors and beepers, sticking a breathing tube in her nose. No cries, no tears of joy and laughter from the proud parents, no welcome and congratulations from the doctors and nurses. No inquiries of her name.
I imagine a pause, doctors noticing that beside her struggle for life that she showed some outward markers of Down syndrome.
I imagine pity.
I imagine professionalism kicking in and the doctors jumping to the task of saving my child’s life.
I have no memory of remarkable joy when she came into the world. I don’t get to have those memories because they do not exist. In those first few moments of living, in her struggle, did she wonder where her parents were? Did the doctors treat her with any love or tenderness as they slowly pumped life back into her?
I felt the baby move early in my pregnancy.
One night in the bath I looked down at my cushiony middle and felt her flutter. She probably wasn’t any bigger than my finger. The warm water swirled around me in my pink Ukrainian bathtub while bubbles of Dove bath soap popped and fizzled around me. The tub was deep and wide. Sounds and smells that were unfamiliar to me muted by the running water. All I felt was warmth regardless of loneliness or homesickness or frustration over the difficulty of the Russian language. I took a lot of baths and the baby was quite active and hearty for well into my second trimester.
Then in my seventh month of pregnancy I noticed less movement. She became sluggish. I drank lots of orange juice and spent afternoons lying on my left side, counting kicks. I almost always felt a soft kick to reassure me of her existence.
Around that time my doctor told us the baby measured small. She was three weeks behind my due date in her size and development. I worried. At times my anxiety was overwhelming. I wasn’t able to do anything but lie on my bed and cry.
I went to the doctor and she assured me that I had nothing to worry about. It was something trivial; either we miscalculated the due date or I just had a very petite girl in there. She wasn’t worried the baby was small because there was consistent growth.
My Ukrainian doctor was a jolly woman. Jolliness is not a typical personality type in Ukraine. She’d smile and laugh and ask us about our two other girls at home while stretching measuring tape around my abdomen. Were they excited about the baby? Do they like living in Ukraine?
“Sergei, please tell her that we are concerned,” I’d cut in, giving my husband a list of questions and concerns at each visit. I wanted to be sure there was nothing lost in the translation. To calm me the doctor would order an ultrasound or a non-stress test and the tests would show that the baby hardly moved. The doctor simply said “ona speet.” “She’s sleeping,” and my heart beats slowed.
I talked to my mom on the phone one day. Her voice was distant. It felt like the telephone line really did stretch all the way over the ocean. I told her that something was wrong with the baby. All I really wanted to do was get on a plane and fly back to the States but instead Sergei prayed and I worried and time passed. Somehow I was able to convince myself I was overreacting.
And I ate a lot of Big Macs. Every Monday, our family day, we piled in to our white ford focus we bought finally after dragging our children around on sleds to the bus stop and metro trains for three years in Ukraine. We drove to an indoor mall in Kiev that housed a huge, modern grocery store and a skating rink, outlined by a dozen or so fast food places and lots of flower shops. Every Big Mac tasted like home. My pregnancy weight packed on.
We sat right up to the skating rink glass and laughed as beginner skaters flailed around on the slippery frozen surface. Our kids were appeased with vanilla soft serve ice cream cones that dripped down their chins on to their shirts as they watched the ice.
Sometimes Sergei took Elaina and Zoya skating. And then I’d sit alone with my Big Mac and my third little daughter quiet and still inside me and giggle as they crept along the ice, the three of them joined together by locked hands, digging their blades sideways in the ice to move forward. I’d laugh until tears streamed down my face.
A metal table housed a tiny television in the corner of the recover room. The walls were bare and a very pale shade of blue, almost gray. A nurse was quietly putting away supplies on the other side of the room. She was blurry. I blinked a few times before realizing a clouded partition stood between us.
She noticed my arousal and came close to me. “Kak vwee cebya choostvooyeteh?” she asked. She was a petite woman, young, her plain brown hair was tightly pulled back in a pony tail. Her demeanor was not friendly but more business-like. I thought about the nurses I had the two other times I gave birth. They were much more friendly and talkative, they smiled a lot and lingered.
I said I was fine and asked about my daughter. The nurse told me my husband had gone home for a few hours of sleep but will be back soon. The baby was in the nursery on a different floor. “You’re husband will explain everything to you when he gets here. For now, you should sleep,” she said, already walking away from me mid-sentence.
But I couldn’t sleep. I was left alone in my own body for the first time in nine months.
For the next two hours I waited for my husband. Periodically I tried to wiggle my toes. I looked down at my stomach a lot shocked that the baby was no longer there. I dozed a bit and prayed popcorn prayers in and out of sleep, “let the baby be OK, let the baby be OK.”
My husband showed up around eight o’clock. His chin was stubbly and he wore the same clothes from yesterday.
I remember the first time I felt an attraction to him. He was interpreting for one of my teammates leading a Bible study on the book of John. Somehow by my junior year in college God had gotten my attention enough to tell me to go to Ukraine as a missionary for a year. My apartment building was next door to where he lived at the time. Our group was the second set of Americans he had worked with. He interpreted, helped people buy groceries, paid their bills, walked them through the metro system. Sometimes he’d stop by my apartment and ask to borrow some music from America. He was kind and serious, quiet yet outspoken when it counted. He was the only Ukrainian working with our American organization who really did not care for America. We became friends. And that morning at the Bible study on the book of John I was convinced his clear blue eyes were focused on me.
In the hospital room he bent down and kissed me like he kisses his mother. Absolutely no pucker or pressure, just a slight brush of the lips. “How are you feeling?”
Again, I asked about the baby.
“She’s on another floor in this hospital in an incubator,” he said. “She was in a bad shape when they took her from you”. Though raised speaking Russian, my husband speaks excellent English. He only makes mistakes in English when he is tired or nervous.
It was like my husband was telling me a story about someone else. I didn’t remember anything about my daughter’s birth.
He continued, “She wasn’t breathing and was very little and all shriveled up. They resuscitated her. She has some kind of blood infection too.”
I looked out the window. It was raining outside. I thought about people getting out of the shower, having coffee, leaving their apartments to go to work. “The doctors said she wouldn’t have made it till morning. She’s cute, but I have to tell you something….they suspect she has Down syndrome and at this point the doctors aren’t even sure if she will make it. The head of pediatrics is coming to talk to us this morning at nine o’clock.”
Sergei’s hand trembled as he handed my a few pages. “When I got home this morning I went on-line and tried to find something about Down syndrome. I didn’t have much time, but I did find a few things.” One page read “Myths and Truths about Down syndrome.” The other page was an article written by a woman whose granddaughter had Down syndrome. With the arrival of our daughter, my parents now had eight grandchildren. I thought about them half way around the world, seven hours behind us in time. Both sleeping soundly in bed. My father’s snoring filling the house.
The fact that my husband looked on-line for information about Down syndrome made my stomach flop.
“Does she look like she has Down syndrome?” I asked.
“She has a full head of hair, just like our other babies.”
I found myself trying to move my heavy, lifeless body over to the left side. Suddenly, all I wanted to do was sleep. I called out to the nurse and asked for another pillow. It was painful to move. My legs were numb and heavy. I managed to get over to my left side with the pillow between my legs. There, I had finally gotten in the correct position to sleep for a pregnant lady. Only then I remembered again that I wasn’t pregnant anymore. My baby was somewhere in the hospital, alone and sick. And she may have Down syndrome.
After a little while my husband left me to go check on our daughter. And I burst into tears. I cried loudly for a few minutes and then tried to gather myself. The nurse watched me through the cloudy partition.