Prayers for Emma

Our little friend Emma will be in surgery on Monday morning to have her heart repaired.  Please take a minute and pray for Emma.  If you’d like more information or to see how it went, go here.

Prayers Emma!

Condolences

Evan Kamida, July 30, 2000 – July 24, 2008

My heartfelt condolences and prayers go out to the Kamida family on the loss of their son, Evan.

Go here to send your love and support.

Relational Capacity

I dropped my two older daughters off at day camp this morning.  They are part of Chicago’s six week park district program, 9-3, everyday, or I guess I should say as much as they want to go.  We’ve never done something like this before so we’ll see how it goes.

This morning after the girls’ hair was brushed to the side, after backpacks were stuffed with bathing suits and towels and water and sun screen, after Polly was dressed in oversized school t-shirt and buckled into her car seat, I looked back at my kids. 

Elaina was grinning ear to ear.  She was literally squealing, albeit under her breath.  She couldn’t wait to get to camp. 

Zoya was quiet.  She has not yet bought in to this whole day camp idea.  This morning before we left we stopped a moment to pray and she asked that we’d pray she’d make a friend.  One friend.

Elaina will eat up the day camp experience.  She is ready to make friends with every child there.  And I bet she does too.  Zoya will be happy to find one girl in her little group.  She will pointedly ask the little girl to be friends and then she will stick closely by this little ally through thick and thin; through the “getting to know you” time, when receiving her new t-shirt for the summer program, as she explores her first camp boxed lunch.

My kids’ relational capacities are significantly unique and completely different.   

And it makes me wonder.  What is my relational capacity?  What was my relational capacity before three children?  Before ten years of marriage?  Before 7 moves and six hours a week of therapy?

Honestly, I am not very good at friendship these days.  Of course I have friends.  I like the people at our church and I try to meet up with them here and there.  I have some great girlfriends from high school who still like me after sixteen years of friendship even though sometimes I don’t communicate with them for months. 

Some neighbors on our street have quietly moved over into the friendship category, not because of time spent together, but simply because I know I could ring their doorbell any time for a cup of sugar or call in the middle of the night if we need to take a kid to the emergency room.

But sometimes at night when S is gone and I am watching something on TV totally embarrassing to admit (like the Bachelorette, I know) a thought will pass through my mind, “boy, it would be nice to call someone right now, just to talk.”

I am not there right now in my life, though.  I am at my limit most days with therapy schedules and camp supplies, bills, cleaning, food, writing, there just isn’t much left for anything or really, anyone else. 

What about you?  How is your relational capacity?  Do you have a lot of friends?  One or two?  None?

Maybe I should invest more of myself in the people around me, people outside of my little nuclear family who are ready to be invested into.

Maybe tomorrow. 

In the Zone

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.

All You Need is Love

This post is part of other Hump Day Hmms about how people walk out of stride.

After Polly’s birth, I was obsessed with her Down syndrome-ness.  Thoughts about her life and how it would affect me consumed the minutes of her newborn days. 

It was not time well spent. 

I drove myself crazy early on, worrying about her health, about whether or not she would graduate from high school, about her looking like she had Down syndrome.  I walked around with one shoe in the air, waiting for it to drop.  I judged her cognition and social skills and speech and muscle tone; can she bring her hands together in mid-line?  Does she make good eye contact?  Is she babbling?  Does she like tummy time?

I thought about people I know whose children are grown and out of the house.  “It’s so good to know that you actually lived through this business of raising kids” I used to say to empty-nesters.  “You’re free,” I’d joke.  And the other person would smile and nod with a glimmer in his or her eye.   These exchanges floated back into my head when I had Polly.  And the words stung like a summer bee landing on my arm on a hot July day.

Really, it was no way to live.  But how could I have known?  Grief does strange things to people.  All my coping mechanisms were scaled away and I had to start over.  I had to get to know and become comfortable with my new persona: the mother of a child with special needs. 

Although very wise people told me to just focus on my baby, to let the future take care of itself… no matter how much I processed, no matter how much I prayed, I couldn’t.  I spent too much time worrying about the future.  It’s embarrassing to admit, but true. 

I missed out on her first year. 

And then one day Polly laughed and smiled and showed me that she thought I hung the moon.  And her thinking that I hung the moon, made me want to hang it.  And so I did.  I started to sing songs to her, to tickle her under her ribs, causing eruptious belly laughter.  I started looking her in the eye, getting lost in what I saw there.  I started bending my head down to rest it against hers.  And I felt the love oozing out of both of us, mixing and becoming something magical.

Now I play with this love between us like it’s playdough.  Some days I use it as a balm to cover my wounds.  It helps me to heal.

Other days I throw it out like a boomerang and it encompasses others and then flings back to me, fuller and stronger then it was.

A person who had Down syndrome came into my life and became my child.  I am sad to say that is how it happened.  If I would wish for anything today, I’d wish that my revelation would have been the other way around.  I wish I would have woken up one morning to discover that my daughter had Down syndrome.  But it didn’t work like that for me. 

And the journey is the journey, whether we like it or not.

Amazingly, now, most days I forget about the fact that I am parenting a child with Down syndrome.  Really, honestly, she is just my youngest daughter, Polly, who loves music and peanut butter.      

Our new favorite song is All You Need is Love by the Beatles.  I bellow out the chorus, “All you need is love,” and Polly giggles and chimes in with percussion, “bum bump bum bum bum bum.” 

Truly.

A hole in my pocket

I want to blog every day.  OK, twice a week. 

I’m lucky if I post at least once a week.

A couple of months ago a sweet friend gave me a massage gift card for my birthday.  I read over the sheet and decided on which masseuse Id like to try.  I called, mentioned the card and asked for the massage therapist who treats women postnatal. 

“How old is your baby?” I was asked.

“Two.”

Wow. 

Polly is two and some days I feel like a mother of a newborn.  And it’s not because she isn’t walking or talking.  It’s because I still have that brain fog.  The fog that descends once the placenta is birthed and you are stitched up and sent home with a screaming, wrinkly little thing. 

I realize that our situation was quite traumatic, therefore it may take a little longer than the average mother to settle in to.  Hopefully the postnatal sweating that occurs when I am involved in strenuous activity like taking a shower, will go away soon.

Today there isn’t anything left over.  Not even pocket lint.

And yes, I understand this post isn’t cohesive.  It just proves my point. 

I blame the fog. 

Ocular

A few weeks ago my husband was saying how he would like to have more friends to hang out with.  You know, watch a game, have a meal, that kind of stuff.  I looked over at him but before I could speak he quickly added, “friends in real life.” 

He likes to chide me about me cyber existence.  It all started after I had Polly.  I remember leaving the hospital about a week and a half after I gave birth, just for a few hours to get some different clothes and see the other two girls.

While there, I got on-line and typed in “new parents of a child with Down syndrome.”  This site popped up and I saw many children with Ds, smiling, playing with siblings, hugging their parents.  I felt a glimmer of hope.  I’ve been a member of that community on-line now for two years.

Then, about a year ago, once again I needed support in a different area of my life.  I went back to my computer and typed in the words “pastors wives.”  Another forum popped up and since then I’ve enjoyed the company of other woman who find themselves in the same position, peppered across different States and denominations.

I spend more time on-line then I would like to admit.  It seems the older I get the less outgoing I become.

So imagine my surprise when I found myself one of two hundred women for a conference this weekend.  Let’s just say it was my attempt at real life friends.  By Sunday morning I was reeling from exhaustion, a fake smile glued to my face.  Oh, how I missed my laptop.  I like the people I was with.  I am just not used to the constant interaction.  

The ocular is highly overrated.

Patheticism

I made up a new word:  patheticism.

Yesterday morning I woke up with a tight back.  I rarely have back issues.  Although I do remember one time my back gave out when I sneezed.  S and I were newly married and living in an unbelievably hot and dusty one bedroom apartment in the Ukrainian Village here in Chicago.  I remember spending two days straight flat on my back.  Our good friends brought over their television so that I would have something to do to keep my mind off of the pain.

So this time, I didn’t do anything major like sneezing.  What I feel is more of a dull ache and a lot of tightness.  It makes for a long day when your two year old is not walking and weighs 26 pounds.

Sleeping flat helped.  Until I got up and started walking around at 7 am.

Polly had physical therapy this morning.  Lately she has been doing so well in her sessions, but today she cried and cried and cried. 

I know she isn’t really sick because she just saw her doctor yesterday for a check-up.

Decidedly, it’s her teeth, still.

The PT left, I gave Polly her obligatory dose of baby Tylenol and then we laid on the floor whinning to one another.

After a while I got her, somehow, up to her bed for a nap.  She was glad to go. 

I just looked up patheticism.  It seems I did not make this word up.

Patheticism:  In its simplest terms, it’s appearing helpless enough that one does not present any danger to those with the power to do one harm.

Exactly.

 I’m going back to the floor. 

Someone’s at the door

At 8:30pm, the door bell rang.  S was reading a book.  Jazz music played softly.  I balanced my laptop on my thighs, lost somewhere in cyberspace.  The girls were finally asleep.  We looked at one another.  And he answered the door.

It was someone from church.  Let’s call him Christopher.

Christopher is a nice guy.  He comes to church often, every other week or so.  S said that he may be stopping by because he needed a place to stay.  Last night, after leaving the home he had been living at for a couple of years, he slept in a half-built house on a construction site. 

Here’s what we know about Christopher:  He hasn’t lived with his parents for a long time.  He answers rhetorical questions from the pulpit at church, happily, out loud.  He gets mixed around when he talks sometimes, loses his place, starts again.  He is nice to everyone. 

Another guy at church always calls him by a different name.  Christopher likes this joke.  He laughs every time and gives his correct name.

Today, standing on the porch, he had a video game in one hand and a large plastic bag filled with his things in the other.  It was raining on and off for a few hours.  He was all wet.

We ushered him in,  heated up some pulled pork sandwiches and gave him carrots with ranch dip.  He didn’t need anything to drink.  He bought a pop on the way.

Christopher and I chatted while S made some phone calls.  A place was secured for him, for the night at least. 

S pulled on his yellow coat with the blue stripe.  We said goodbye and I closed the door behind them as they walked down the porch stairs.

Just tonight at dinner, Elaina was asking a question about kids without parents. 

“Some parents, Lainie, unfortunately, either don’t want their kids or are unable to take care of them.”

Christopher is not a kid anymore.  But he’s been on his own for a long time and in a lot of ways, is still a child.

Sometimes I wonder what we are doing?  I’m often surprised that my husband is a minister.  There have been weeks that I’ve hidden in my house during the blessed 11:00 hour on Sunday morning, blinds tightly shut because I couldn’t play the part that day.

Stuff like this, though, a person on the door step, watching the back of my husband as he leaves to give someone a ride, a silent prayer on behalf of another person.

It feels right. 

The Mom at Gymnastics

The names in the following post have been changed to protect those unknowingly written about on my blog.  The people are real but their names are different.

—————————————————-

You never know who you end up sitting next to, or what their story is. 

I posted about Elaina signing up for gymnastics.  I waited outside her class with a book on the first day.  I wasn’t very interested in reading.  The book wasn’t that good.  

Another mother sat next to me.  Her book looked better than mine.  I asked her about it and we chatted a bit here and there.  She laughed when I overheard someone mention that the gymnastics class was for experienced gymnasts.  The look on my face communicated that my child was a beginner. Elaina would just have to pretend that she knew what she was doing.  

I remember thinking this lady was nice. 

The next week, a rainy Tuesday, S had a meeting.  So off to class we all went; me, Elaina, Zoya and Polly.  I had a headache.  Polly was fussy.  Zoya decided spur of the moment that she really wanted to take gymnastics instead of ballet so her nose was out of joint. 

We shuffled up the cement stairs and into the building.  Polly straddled my hip, coat unzipped and falling off; her hair was coming out of the ponytail on the top of her head.  It hung in her face.   

The class is just an hour, but I wasn’t about to hold Polly on my lap for the duration.  We couldn’t play outside at the park because of the rain and the floor looked pretty dirty, well, dirty enough that even this seasoned mother of three wouldn’t put her youngest down to toddle around on her hands and knees.  Plan B was to drop Lainie off and head home.  Sergei would pick her up later. 

The nice mom with the good book walked in a few minutes after us.  Immediately, she noticed Polly. 

“You’re the minister’s wife, right?” 

I was surprised.  Most people who know that S is a minister try to avoid the topic. 

“Yes, how did you know?” 

“I’m Sarah, Charlie’s mom.” 

My mind jogged back to last summer.  We were new to Chicago.  One day S came home from the park with the girls.  He told me that a lady came up to them.  She wanted to meet Polly.  As they talked, he found out that she, too, had a child with Down syndrome.  But her son had serious health issues, and he passed away. 

“She gave me her phone number and wants you to call her,” he said. 

I was scared to call.  While punching in her phone number on my cell, I took a deep breath.  Waiting, I looked out the window.  The view was still new to me.  The Japanese maple tree planted in front of the porch was in full bloom. 

I left my name and number after the beep. 

A few days later, she called back.   

It was getting dark outside.  All the windows were open.  People chatted as they passed our house on the way to a restaurant or a bar.  S figured out how to get a few stations in on the TV with the rabbit ears and we were watching a rerun.  I can’t remember what show it was.  But I do remember our house was barren.  The living room held two chairs, empty bookcases, the old television.  Boxes lined up against the wall. 

We talked about Polly for a little while. I briefly covered our history, …lived in Ukraine for a few years as missionaries…had Polly there…she was very sick at first, in the NICU for twenty days…on the sixth day a blood test confirmed the Down syndrome…six weeks later we were on a plane, headed back to the States, primarily to care for Polly, holistically, because we all needed the care.  We talked about Early Intervention in this area and about therapists who were good.  I wrote down her recommendations. 

Then I asked her about her son.   

And she began to cry. 

“He had a lot of things going on.  His little heart just couldn’t take it all.  When we found out he had Down syndrome, I told my husband we could handle this.  I knew that we would have struggles, but I didn’t think Down syndrome was that big of a deal.  But his health issues were something different, entirely.” 

After Charlie died, Sarah started a preschool named “Charlie’s Place.”  The goal of the preschool is to provide a safe, learning environment for all children.  Sarah’s dream is to see the preschool integrated with typical kids and kids with special needs, so that they can learn from one another. 

That evening, sitting in the dinning room, in the dark, I said something to this mother that still haunts me sometimes.   

“It’s taken me a while to grieve Polly’s diagnosis.” 

I did not decide to grieve.  When Polly came along it’s not like there was a drum roll somewhere off in the distance.  I did not say, “And now, officially, I will fall apart.”  It happened gradually.  It was like a small cloud, quietly, most assuredly taking the place of th sun, until you are left in a shadow.  

I felt my heart sort of tip a bit after the words were out of my mouth.  I gasped.  I was ashamed.  This woman was actually grieving her child.  She couldn’t hug him anymore, or kiss the insides of his elbows, or watch him smile and hear his laughter as he swings back and forth at the playground.   

These are the things I’ve been thinking about this week: Writing about Emma and then, Ella, running into a mother who is bravely living life despite her great loss.  Walking around the neighborhood, pushing Polly in her pink polka-dot stroller, Lainie and Zo leading the way with their brightly colored helmets, peddling as far away from me as they dare.  Indubitably stopping at a street corner. 

I can’t help but pay attention to the blessing of health.  And at least, for today, not take it for granted.  I’ll clap for Polly in therapy every time she puts another block in the bucket.  I’ll act silly, smile and dance around when she cruises up and down the couch.  I will let Zoya read me “Not Dots” for the fiftieth time, simply because she is reading.  I will not turn a deaf ear to Elaina as she talks to me again about friend troubles at school.   

Polly’s face lights up when her favorite therapist walks through the door.  The one who lets her pick what to do next, who applauds after an impromptu song, who lets Polly pick the same book every week, because she knows it’s her favorite.  They like to play with playdoh together.  “Rolling, rolling, rolling, rolling, roll it out, roll it out.”

This is one of the therapists Charlie’s Mom recommended.