Pocket Lint

Why it is hard to tell the truth in my memoir

2012-01-24T09:57:00.000-06:00

(NOTE: I added this post to Joy in this Journey's life: unmasked linky. Read more here.)

Most of you know I recently completed a memoir and am now querying agents for representation.

So far no one's bitten. I have received a handful of polite rejections regarding my project. I suspect I will continue to get rejections for a while. There are just too many aspiring writers trying to get their work in print. Some agents claim over 100 new query letters hit their inbox every day. EVERY DAY! And so I trudge on, do my research, send the queries, and continue to work on my craft.

But I have a confession: sometimes when I get a rejection, I breathe a slight little sigh of relief. It's not that I love rejection ( I mean, come on, I was in Junior High once). It's not because I want to tell one more person in my life that I have spent over three years writing a book and it seems that no one, as of yet, wants to read it.

I breathe a slight little sigh of relief because of fear. I made a commitment to the story and to God to tell the whole truth about those first years of Polly's life. In memoir, (as in life) its a no-no to lie. When I got serious about writing our story, I knew that I would have to be real about everything that happened after Polly was born. As a missionary and pastor's wife, my response to having a child with Down syndrome was much less than Christian. The bottom of my faith easily fell out. I got depressed. I stopped showering. I drank too much Chardonnay. I struggled to love my baby.

Do I really want people to read all of that?

To tell the truth, the answer is no. I don't want people to read the whole story because I am afraid of what they will think of me. I would rather hide the hard parts of my life and let them think that I scooped up my child with special needs and said a prayer of thanksgiving for her life and moved on. I would rather them think that I am always a woman of faith, worthy of the call to be a child of God.

But Flannery O'Conner says the truth does not change according to our ability to stomach it.

I would also add that truth loses its power when altered.

Even though I am afraid, I realize that my story isn't worth telling if not told in its entirety. The very essence of my memoir's power (if there is any) is brokenness. The fact that God came in and rebuilt me and my faith and my relationship with my baby after I fell apart is the real story. The redemptive story. And I am convinced the very thing people need to hear to truly get a clear, non-superficial, non-judgmental idea of Jesus.

I used to think of redemption as a one time thing. I believed in Jesus whenI was sixteen years old. His payment for my sins on the cross equaled a done deal.I still believe this. It is the very core of my beliefs.

But I also believe that we are all a work in progress. There is a continual need for everyday redemption. The kind ofredemption that heals a mother's heart. The kind that sets a person back up on the wagon after he has fallen off, that helps someone apologize to her kids for freaking out over spilled milk, or causes a shoplifter to put the bra in her purse back on the shelf in Target. A redemption that showed me that the child I was afraid to mother was the exact child I neededto reach depths of joy and wonder otherwise unknown in my life.

So I will keepputting myself out there. If my memoir publishes one day, not everyone will like it. There willbe criticism (well deserved, I should add). There will probably even be disappointment. But most importantly, there will be the truth of everyday redemption and unexpected beauty, displayed in the birth of a child with slanted eyes and the widest smile on the planet.

And I think, that's enough.

Keep Pocket Lint?

2012-01-23T08:40:00.000-06:00

I am debating whether or not to discontinue Pocket Lint and only publish blog posts on www.gillianmarchenko.com from now on.

The thing is, I love this place, even though I am an erratic poster.

So, what's your vote? Keep posting both places or say goodbye to Pocket Lint?

A blanket of snow

2012-01-13T10:01:00.000-06:00

We had our first real snow in Chicago yesterday. It came late in the season, after shimmering Christmas lights had been taken down and stored away for next year. After the two-week winter break from school, a time when kids typically layer clothing and snowsuits to burrow in the snow, build forts, and come back in and sip steaming hot cocoa, had come and gone. Instead, my kids played outside with their neighbor friends during their time off in sweatshirts and light pants.

The snow started mid-morning. I noticed it falling outside my kitchen window as I rinsed out the breakfast dishes. It clung to the empty tree outside our living room. I hurried to finish my chores and make my phone calls so that I could cuddle up on the sofa with a cup of coffee and watch.

I love how a blanket of snow makes my surroundings beautiful and fresh. It reminds me of beginnings. It reminds me of starting over. It reminds me of redemption.

The snow is important to me because it was on such a day that I first realized four years ago that I was head over heels in love with my little girl who had been born with Down syndrome. Up until that morning I had loved her for sure, but it was more of a duty. I loved with fear. I loved at arms length.

But that morning; a blanketed snow morning when Polly was a baby, she and I played on the floor while the other girls were at school. We looked out the window and watched the bits of cold and ice fall from the sky. She gave me a million slobbery kisses and my heart cracked open with the most unbelievable sunlight I could imagine. It reminded me of when Lucy steps out of the wardrobe into Narnia for the first time.

And now every year the first real snow fall is the closest thing to magic in my life. When the ground is heavy with white I clear my calendar. I leave the laundry for another day. I turn off the computer. I gather my children to me and revel in their love. I thank God for cold places in my life that warrant me the outside-of-myself ability to appreciate the warmth.

I am thankful for a blanket of snow.

(Please note: I have a new website: www.gillianmarchenko.com. Thanks!)

Check out my new website!

2011-12-21T15:44:00.002-06:00

www.gillianmarchenko.com

Big thank you to Cory Benson of Simply Design for the fabulous look!

Christmas play at church

2011-12-21T15:03:00.001-06:00

The kids did a great job! The donkey wasn't half bad either!

Leading the way

2011-12-07T14:11:00.001-06:00

When Polly was born and we learned of her diagnosis of Down syndrome, I grieved the child I expected. I didn't know much about Down syndrome. My mind quickly flipped to un-flattering images of a child sitting alone at recess,or a mother in her golden years walking slowly through the aisles of Wal-Mart so that her adult daughter, still a child, could keep up. Sadly, it took me a while to let my guard down and fall in love with Polly.

Polly's older sisters led the way. From the moment they met her, they dripped with love for her. They loved everything about her: "Oh, look at her pudgy little hands! Look at her wispy brown hair. Isn't she just the cutest little thing ever?" When we later explained to them that Polly had Down syndrome, and that she would need a little extra help doing things, they didn't bat an eye. "I guess it's good that God gave her older sisters then, huh, mom?" Elaina said.

Indeed.

Two years ago, when Evangeline joined our family, Elaina and Zoya took the lead once again. Elaina stayed with me for seven weeks in Ukraine until the adoption was finalized. She spent long, Kiev days tickling Evie and helping me take her outside for walks as we waited for the paperwork for the adoption to go through. Once again, I struggled, and my kids led the way.

Snapshot from today:

A toy came home in Polly's backpack today from Kindergarten. It's one of those birthday favors. You blow on it and it flings out in front of you. What fun! Polly figured it out right away, and I was thrilled that it wasn't one with sound.

A little while later while I was finishing up an email on the computer, I saw Polly bring her new toy into the kitchen. Evie was sitting up on top of the table (one of her new favorite perches in the house), kicking her feet off the edge.

"Look, Evie," Polly said, moving carefully, climbing up on the bench and then sitting down next to her on the table. "Look, Evie, it blows out," she said, and then promptly gave a demonstration. I fought the urge to intervene. Evangeline is easily spooked and she is not Polly's biggest fan. Most people love a happy, in your face five-year-old but Evangeline could do without. But I took a breath and waited to see what happened.

"You see that, Evie. It's red. It's pretty. It's fun." Polly blew on her toy again. "You like that, Evie. Do you?"

And the most amazing thing happened. Instead of reaching out and grabbing the toy. Instead of crying. Instead of getting the heck out of dodge (read: getting down off the table and away from Polly a.s.a.p.) Evie laughed.

She laughed.

Polly blew her toy again. Evie kept laughing. And for about five minutes they seemed like they were, I don't know what's the word?, playing together.

It was magical.

When Polly was born, I worried that she would feel alone but I learned quickly that her sisters would never let that happen. When Evangeline joined our family, I worried, I still worry, that we won't be able to reach her. Some days she is very far into her own world. And then today, Polly initiated a game with Evie and Evie, just a little, for a few moments, let her in. Polly had Elaina and Zoya to prod her along in her development, and now she is starting to lead the way for Evie.

The magic is now gone. Polly broke her toy because she kept twisting the blow out part. Evie stole all of Polly's pretzels out of her favorite ice-cream bowl. Polly is running circles around the house yelling, "hey, Evie, leave my snack alone" and Evangeline has climbed off the table. As I type she is eating pretzel bits off my, um, super clean kitchen floor.

But I don't care. I'll take the five magical moments when I saw Polly work her sister mojo on Evie.

Sisters are the best therapists in the world.

The tree is up, begrudgingly

2011-12-05T16:06:00.001-06:00

Mom! Leave us alone!

Yea, Mom, whatever.

Zo was having fun!

Polly made fast friends with the army of Nutcrackers.

Dirty Face Evie! I think she had a cookie!

Every Angle and Mary I own for Christmas has a broken arm or hand. I feel a blog post coming on!

My kids love doing the Advent Calendar and reading this beautiful Advent Book

(all original artwork. Check it out here.)

No chimney at our house. The Stockings were hung on the woodwork with care...

Sergei was finally able to hang a few ornaments after messing with the lights on the, um, pre-light tree.

When we finally got to decorating for Christmas this year, two out of four kids were in bad moods and ended up in their bedrooms. Everything went up in just over an hour in the midst of fussing and frustration and when we were finished, although I am not much of a liquor girl, I was looking around for a mixed drink.

We didn't make perfect family memories this year decorating, but I did catch Zoya and Polly playing with the winter village, and Evie liked the Christmas music as long as it wasn't too loud, and Elaina, who is 11 turning 23, had a faint smile on her face for a second or two at some point, that is until she noticed that I noticed. Ha!

Press all the way down

2011-11-18T12:55:00.001-06:00

"No, honey, not like that. Like this."

Ten half-pushed imprints of little circles encompass Polly's spread out and matted down Play-Doh she plays with at the dining room table.

I place my hand over her's and push the Play-Doh container firmly into the squishy green dough."You have to press all the way down until you feel the surface of the table. Then you need to wiggle the container a bit, so as to create a little space between the Play-Doh inside the container and the rest of it. That way you know it is completely separate, and you've got your circle.

Watching my hands, I stop and think. My life is full; Elaina, Zoya, Polly, and Evie, health and developmental concerns for all of them, time with Sergei, advocating about Down syndrome, church, and writing, and housework, and friendships. Even just thinking about today: the girls are off from school, and I wanted to start getting them ready for bed, like we had already lived a full day, by nine a.m this morning.

Because my life is full, I fear that I am not doing everything as well as I should. I am tired, weary. I liken myself at times to a weakened farmer looking out over an expansive field needing ploughing on foot.

But my instructions to Polly regarding Play-Doh strike a cord in me. My spiritual ears perk up. I imagine God speaking to me.

Place your hands on top of what I've called you to today and press all the way down. Reach the surface. Give it a little wiggle. Create the needed space for the task at hand. If it is a full day with the kids, then press down there. If it is a writing day, steal yourself away and press down there, for my glory. Don't worry about the amount of things in your life. Just pick one thing right now, press all the way down and make contact.

Polly watches me work with the Play-Doh. "Did you hear me, honey?" I say. "You have to press all the way down." "Oh, you do?" my sweet five-year-old asks, trusting, ready to try, even though it is a challenge for her to push her palms down strong enough to complete the task. A smile takes over my face, and I reach over and plant a light kiss on top of her dusty brown hair.

"Yes, you do," I gather up the pile of green fun, roll it into a ball and squash it flat into the table. The Play-Doh spreads easy. It is once again smooth and ready for a new circle. This is my task at hand today. To spend time with my kids and wiggle enough space in my head to be fully present and make contact.

Evangleline's OK, thanks for the prayers!

2011-11-09T14:50:00.000-06:00

We saw the neurosurgeon today at Children's Memorial Hospital and he said that Evie's x-rays show that there has not been a change in the gap in her vertebrae and its stability. Thank you, God! For now, we continue to watch her to see if there is ever a change in her mobility, and she is restricted from participating in a tumbling class :), but there isn't a need for surgery as of now for her AAI. The doctor also said that there really isn't an answer for the popping in her neck.

I am very thankful that our little one, at least for today, is okay.

Thanks for your prayers!

Evie needs prayer

2011-11-08T11:58:00.000-06:00

We need prayer for Evangeline. About a year ago she was diagnosed with something called Atlantoaxial instability (AAI), a spinal abnormality between the C1 and C2 vertebrae. It's another by-product for some kids with Down syndrome. Anyway, a year ago the gap wasn't that big and it was stable, which was great news for us because a wide, unstable gap could warrant spinal fusion surgery and months in a halo. Not fun at all.

On Sunday, while I was getting Evie ready for church she was cuddling on my lap and I noticed a pop like movement reoccurring near the top of her spine (right where her abnormality is).

I called her neurosurgeon's office on Monday about it (the same guy who did Polly's brain surgeries) and he wanted to get her in right away for neck x-rays. I have spoken to two other moms of kids with DS and AAI, and both of them said the popping isn't good, their kids had it too, and ended up needing the fusion.

So we go in tomorrow morning at 7:30am for the x-ray and then see the neurosurgeon at 9:15.

Please pray? I don't have a good feeling about this. I am really anxious today.

Evie's birthday recap

2011-11-07T08:52:00.001-06:00

I have to say, Evangeline just wasn't feeling her birthday celebration this year. It was partly my fault. I planned her little family party too close to her bed time. After dinner, singing, brownies and ice cream, she promptly crawled out of her chair and went up to her room.

The days to follow, we tried to get her interested in openning gifts. Thankfully, Elaina, Zoya and Polly were around to help a sister out. Once the gifts were opened, Evie has enjoyed playing with her new things. She's just not so much into wrapping paper, I guess.

Sadly, I don't think I got even one shot with a real Evie smile. But I'll post some pictures anyway of my begrudging birthday girl :).

Perseverance

2011-11-03T16:05:00.001-05:00

I had a nice little exchange with Zoya today after school.

"Hey Zo, did you have a good day at school today?" I asked, as my middle daughter crawled up into my lap, a challenging task in and of itself when a kid is nine years old.

"Yeah, it was a good day."

"Did you think about your dear, old mom at all today while you were at school?" I cuffed her under her chin, teasingly.

Zoya sat for a moment, started to shake her head no and then her eyes lit up and she changed the direction of her head movement.

"Actually, yes, Mom, I did think about you today. My teacher read us another part of the book we are listening to every day and afterwards she was talking about the main character and how he perseveres through his trials in life. And then our teacher asked us if we knew anyone who has persevered in life... and I thought of you."

"You thought of me?"

Zoya's words surprised me. Sometimes I worry that I am too open with my girls. They know too much. They know when I am struggling with my depression, or worried about Polly or Evie, or preoccupied with writing and getting my memoir published.

"Well, because you persevere, Mom. You persevered through Polly's stroke and brain surgeries and with trying to help Evie learn to talk. You persevere when you are sad and try to feel better, and you are persevering with your writing. I thought of you, Mom, because you persevere."

I grabbed Zoya to my chest and squeezed her as tight as possible. Even though it was a rainy day outside, for a second I could feel the sun on my face.

Now, I don't know if I entirely believe her. One could always do better in the area of perseverance. But hearing those words from one of my kids: she sees my struggles but she also sees my attempts to get through them and make things better. What a gift.

This nice little exchange with Zoya will keep my love tank filled for miles.

Ocotber fun!

2011-10-31T08:39:00.000-05:00

Believe it or not, Evangeline is still not through all her birthday presents. This year she is not feeling her birthday... at all. So, pictures of her big day are coming in the next few days.

Until then, here are a few pics of us at a pumpkin patch and of the girls dressed up for a little trick-or-treating. Enjoy!

Evangeline is five years old today! Thoughts about five years.

2011-10-27T11:36:00.000-05:00

Today is Evangeline's birthday. She has officially joined her sister Polly in the five-year-old club.

This morning I sent Evie's favorite treat to school with her to share with her classmates: mini-Hershey chocolate bars :). Before she woke up I hung the Marchenko family birthday sign up for her in the dining room, and each time her three sisters woke up today the first thing they said was, "today is Evie's birthday! Yeah Evie!"Evangeline has been home with us a little over two years so this is her third birthday with us.

In the last two years I've had mixed emotions about Evie's birthday. This year is no different. I woke up today wondering about her birth mom. Is she thinking of Evangeline? Does she go over the day she gave birth five years ago, recalling every detail? Does she remember the moment she decided to sever her parenting rights? Does she think of it all with sadness, or hope, or confusion?

Don't get me wrong. I cannot judge Evie's birth mom. I was not in her shoes. There is no way I can know what she was thinking or feeling when she had Evangeline.

I am just glad that she had her. And I am glad that I get to share in the privilege of being Evie's mother with the woman who grew her in her womb.

Sometimes at the park while Evangeline is swinging, another mother will ask me about her.

"How old is your daughter?"

"She's almost five," I say, and the mother may look at me out the corner of her eye, because Evie more so resembles a two-year-old with her cute, tiny gymnast legs that still house baby pudge. And she doesn't talk. She still doesn't really sign. She's short and little. How can she be five?

When people ask me how old Evangeline is, I consider just lying and saying she is two. That way everything about Evie will be more appropriate and comfortable for all involved.

But today I am thinking about the number five. Evie has been alive five years. And they were hard earned years: two-and-a-half in an orphanage in Ukraine and the rest with us here in the States. Evie has survived more in her little life than I can ever fathom.

And yet, she has a smile for me today of all days, on her birthday.

So I say happy FIFTH birthday to my youngest daughter. Congratulations, honey. You've come so far. And I can't wait to see what God has for you next.

(And stay tuned for birthday party pictures in the next few days :).

It came and went

2011-10-26T10:53:00.004-05:00

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

Sorry I haven't posted... but I finished my memoir!

2011-10-24T09:11:00.000-05:00

Sorry this blog is being neglected... again.

But I am happy to report that I have finished the third draft of my memoir and compiled a list of agents to query for representation. These next few days I hope to complete my book proposal and then, God willing, I plan to begin the process of finding an agent to help sell my book.

Here's a little blurb about my memoir:

The day I was told my daughter had Down syndrome, I wasalone, holding my baby’s heel in the former Soviet Union.My book entitled KRASATA(beauty in Russian), A Memoir of Motherhood, Down syndrome andUnexpected Beauty, starts with a mother whose faith nearly bottoms out bythe birth of her daughter with special needs. With humor, poignancy, andhonesty, spanning two continents, the story ends with the unexpected beauty ofan unwanted child who points out the benefit of brokenness and helps positionher mother’s heart closer to God.

Oh, and I need a favor. Not only do agents want proof that you can actually write, but fore non-fiction, they want proof that people will buy your book. If you haven't done so already, please click over to my author page on facebook and "like" me. I have a goal to get to 1,000 likes. I am currently at 885. Also, subscribe here on Pocket Lint, or through network blogs on facebook. I promise I won't bug you too much with new content, even though I probably should.

I have been working on this book project for three years. Now that I am close to actually showing it to people, I'm a little freaked out. Edna St. Vincent Millay said that a person who publishes a book appears willfully in the public eye with his pants down. I get that. There are parts of my story about having Polly that aren't pretty. There are pages in the book that are down right embarrassing. Nonetheless, I think that God wants me to get my story out there.

So I will forge ahead and perhaps, invest in a good belt.

October is Down syndrome awareness month...

2011-10-05T09:43:00.001-05:00

and I am totally missing the boat. I had plans to blog every day in October about Down syndrome. I wanted to tweet about it and post facts every day in my facebook status.

But instead, so far in October, I haven't done a thing to advance awareness about Down syndrome. Instead, I've spent the last three days in and out of bed. I've been crying for no reason. I've been too overwhelmed to think about raising awareness.

I've been too overwhelmed to brush my teeth.

Depression sucks.

Two nights ago, at bed time, Sergei brought Polly up to me in my room. She crawled up onto the bed, placed her cup of water on the side table, and leaned in to nuzzle her cheek to mine.

"Mom, you know what?" she asked, looking me square in the face with her beautiful, large doe-like eyes.

"What, honey?" I whispered, tired from the dark blanket that had been inexplicably thrown over my head for the last few days.

"You're my best friend."

"Thank you, Polly." I started to cry. "I needed to hear that."

Even in the midst of the ups and downs in my life, I am profoundly aware of the gift God has given to me in my children. All four of my daughters bring light to a life that is often in the dark. But Polly and Evie, especially, brighten my days with simple things: a hug, a smile, words of love and adoration.

It is important to know the facts about Down syndrome.

But I believe it's even more important to testify to the fact that my daughters with Down syndrome are living, breathing anti-depressants in my life.

I am so thankful to have them. What a privilege to get to live day by day with that kind of awareness.

The wisdom of children

2011-09-26T10:49:00.000-05:00

One early morning when Zoya was ayear and a half, Elaina, then three years old, came into our bedroom, crawledup in between Sergei and me in bed and placed her hand on my chest.

“Mom,Zoya’s crying.”

“Ihear her, Lainie.”

“Well,then, get up and get her,” she admonished.

“Elaina,I will. I just don’t want to get up thissecond.”

Shewas silent for a minute.

“Mom,you shouldn’t have had kids if it’s too hard for you.”

Oh, the wisdom of children.

Elaina is eleven years old today!

2011-09-22T07:24:00.002-05:00

Happy Birthday to my sweet daughter Elaina. She is eleven years old today.

Today we'll have a small family party with some presents and then on October 1st she is having a dance party at our house to celebrate with eight of her closest friends.

So thankful for our girl!

Great email from aid about Polly's first week!

2011-09-12T10:57:00.003-05:00

The following email is from Polly's aid. I am so thankful for such a great update about Polly's first week mainstreamed in Kindergarten!

Good evening,

I wanted to contact you just to give you an overview of the amazing week I had with Polly. I know you have probably been in close contact with Ms. ***** but as someone who worked with Polly quite often, I wanted to give you a little overview from my perspective. I took your email information from the information sheet that you provided for the parents. I hope this is ok.

From the moment I met her, I knew she was going to a great student to work with. I was extremely excited. The first day was good. Definitely a time of adjusting and observation. A little challenging but I don't think she purposely sought to challenge me. It was simply my first day ever working in a position as an individual assistant so it took time for me to adjust as well. Wednesday was a day of great improvement with Polly being very cooperative and obedient. I believe that was the day you came and she did continuously ask where her mom was but she was still very cooperative. I don't think it hindered her focus.

Thursday was amazing. In the morning, we wrote numbers. I would call out the number and she would repeat. I would then write the number down and she would try to trace it. I had a really proud "teacher" moment when we opened up her green notebook to keep going after running out of space and she wrote the number 14 and said it without any help from me. I actually wrote a note in the notebook after she did it. She is really great at counting and went ahead of me when I tried to count slowly just to let me now that she could do it. Since Wednesday, she has been great at using the restroom as well. I'm only with her for 30minutes in the morning and an hour in the afternoon so I only do bathroom break with her once a day but when there she is great. She really likes being independent with using the restroom, even trying to lock the door when she hears her classmates slamming and locking the doors.

I have lunch with her as well and she is great with that. As I told you, the first day, she did have a challenge with seeing her sister but now when her sister speaks, Polly speaks back and is fine after. No attempts to run after her. Today she whispered to me and told me that her sister was coming soon as if she knows the moment that her sister comes to speak each day. She tends to try to eat all her food but with a short lunch time, its a little hard for her to finish. I've realized that she likes to do things that she sees/hears others doing. In some instances this has worked such as the bathroom and sitting and standing when asked but sometimes when her classmates do things that they shouldn't, she repeats but she will be fine. Today was great. I didn't have to help her much at all. She stayed in line, walking on her own, and followed all directions.

I do hope for more updates as encouraging as this! Go Polly! And a huge thanks to Polly's aid. You made this Mama's week! I hope to update on Evie's school later this week.

My Friend Isabelle take home sheet for Polly's mainstream class

2011-09-07T12:36:00.006-05:00

(The following info. is part of the take home sheet I prepared for Polly's class. Her teacher invited me to come and read a book and talk to the children about Down syndrome. What a fabulous idea!)

Hey Room 108 parents!

Meet Polly!

This is Polly. She is five years old and thrilled to be an Audubon Hawk this year, just like her two older sisters (Elaina- 5th grade and Zoya -4th grade).

Ms. Stack graciously invited me to read a book to the students. I chose “My Friend Isabelle” by Eliza Woloson. It’s a fun book about a typical friendship between a little boy named Charlie and his friend Isabelle. Throughout their play-date, Charlie talks about how he and Isabelle are both alike and different.

“I run fast. Isabelle takes her time.”

“We drink apple juice and eat Cheerios at the little red table and chairs.”

Isabelle and Polly have something in common, too. They both have Down syndrome.

Today at school, I attempted to provide a kindergarten appropriate definition of Down syndrome for Polly’s classmates:

"Down syndrome is something that causes differences in the way a child looks and learns. Babies with Down syndrome are born with an extra chromosome in some or all of their cells. Chromosomes are tiny, thread-shaped things inside your body. They contain the directions that tell your body how to grow. These directions tell your body what color your eyes and hair will be, how big your nose will be, whether you will be a good singer, and many other things. When a kid has an extra chromosome, it mixes up his body’s directions a little. That is why kids with Down syndrome look a little different from others sometimes and have to try harder to learn."(adapted from "We'll Pain the Octopus Red" discussion points at the back of the book)

I would love to see all our kids in Rm. 108 have a fabulous year. In that vein, I’d like to ask you to talk to your child about “My Friend Isabelle.” You can talk about:

- The definition of Down syndrome

-Differences and similarities between your child and other classmates

-How different doesn’t mean bad

-How to be a good friend to everyone at school

-How Polly may need a little more time to learn things, but that she will learn.

If you or your child has questions for me or Polly, we’re happy to try to answer them. And just like Charlie and Isabelle, we love play-dates!

Warmly,

Gillian Marchenko, Polly’s Mom

First day of school! Yeehaw!

2011-09-06T08:47:00.004-05:00

School is now in session. Hooray!!

Polly is in kindergarten. Say a prayer for her. She's in a mainstream kindergarten class
with an aid.

Elaina is in fifth grade.

Zoya's in fourth.

Evangeline is doing half day preschool one more year. She's the only kiddo on the bus this year. Say a prayer that her year kicks off to a great start.

Here's a pic of all the kids going to the neighborhood school. (Evangeline already left for her school on the bus). Our friends Riley, Kadin and Layla started at our school this year too. Fun!

More than taken care of

2011-09-01T08:28:00.009-05:00

Polly at her preschool awards ceremony last year

Worries about inclusion

I have to admit, when Sergei, the IEP team, and I decided to try Polly out this year in mainstream kindergarten, I was nervous. On one hand, I thought it would be great for her. I could see her thriving with her typically developing peers, sitting well at circle time, working on printing her name, playing with a friend at recess.

But on the other hand, especially as the school year approached, I started to worry. What if she runs away from line while the kids are taking a bathroom break? What if she disrupts the whole class too much? Will other kids make fun of her when they notice she still wears pull ups for the the occassional accident?

What if her school simply accomodates her without putting together a great program that meets her needs? I don't want inclusion to mean she gets to be with the other kids, but on the fringe.

A couple weeks ago I started to have trouble sleeping. I kept finding a heavy stone of worry in the pit of my stomach. This placement isn't going to work. This placement isn't going to work. I'd pray, or roll over, or wake Sergei up so he could assure me that Polly would be fine.

Our neighborhood school where Elaina and Zoya go is wonderful. We've had fantastic teachers for both girls every year. And the administration is striving for excellence and approachable. But I haven't seen that many kids with special needs there. Would we need to blaze a trail and if so, did I have enough fire in me to light the match?

Assurance from her school

Just when my consuption of worry was starting to equal a meal, I got a phone call from Polly's school.

"Hi, this is Polly's kindergarten teacher Ms. *****. We'd like to have Polly come in next week so I can meet her and do an assessment."

Polly and I walked to school two days later. She met her new teacher, sat up to the child-size work desk, and proceeded to show me and her teacher that she knew nearly all the letters of the alphabet. She knew several shapes. She answered questions and with gentle reminders, stayed on task. I nearly bubbled with pride. Her teacher seemed pleased, too.

During the assesment, another teacher came into the room.

"Hello, Mrs. Marchenko, I'm a learning specialist here at the school. And hello Polly!" The teacher turned to Polly and gave her a big hug and a high five. "Polly, I know you! I came to your other school and watched you in pre-school several times. I am so glad you are here with us. We've been waiting for you."

They've been waiting for Polly.

The learning specialist explained to me that she works with kids who have IEPS. She spends most of her time at our neighborhood school, but has also worked at Polly's pre-school. "I've been working with kids with special needs since 1992, and I only do inclusion. Polly's going to do great here. We are setting up a wonderful schedule for her."

Since that day, I've corresponded a bit more with the learning specialist. Although Polly will have an aid working with her, this teacher will oversee Polly's days. When Polly is pulled out of class to work on IEP appropriate subjects (probably math and writing), she'll be with this teacher.

"Mrs. Marchenko, we'd like you to come to Polly's class the first week and read a book about Down syndrome, too."

This teacher combed through Polly's IEP and made an appropriate schedule for her. She met with the aid and with Polly's kindergarten teacher and walked them through the schedule and prepped them a bit on ways to include Polly in the classroom as well.

I am blown away.

When you have a child with special needs, there is always a concern that your kid will simply be tolerated. In my book, being tolerated is only a slight step up from being made fun of or ignored.

School starts next Tuesday, September 6th. I'm still not sure how Polly will do fully included. But I am confident her school is ready for her. She has a great team of professionals to help her thrive. And they are thrilled to have her.

Polly will be more than taken care of, which does a Mama's heart good.

So come on, mainstream kindergarten! Let's do this thing!

Answer my questions about special needs

2011-08-30T08:59:00.006-05:00

In an effort to build a platform for the book I am writing and to encourage an open dialogue for moms about special needs, this fall I will start speaking at MOPS (Mothers of Preschoolers) groups in three States: Illinois, Indiana and Michigan.

I am in the process of preparing talks that revolve around special needs.

1) Unexpected Beauty (our family's story based on my book)

2) Loss and Grief in Motherhood (focusing on having a child with a disability and miscarriage)

3) Us and Them: How to help our kids be good friends to individuals with special needs by being good friends ourselves.

Do me a favor, answer my questions:

1. Do you have a child with a disability? How do your friends with typically developing kids encourage you in your parenting?

2. How do mothers in your circle of interaction hurt you by their insensitivity to your parenting challenges?

3. How do you teach your kids to be a good friend?

4. If you grieved the loss of a child through miscarriage, how long was your grief process?

Friday Feature: A Village of Comfort, by Morgan Gaking

2011-08-26T09:21:00.000-05:00

Thanks to Morgan Gaking for this week's Friday Feature!

Have you ever been to a party where you didn’t really know anyone? Maybe you only knew the host and after saying hi you were left to stand awkwardly amongst strangers. But then sometimes there is that person. That person who notices you, all alone, introduces his or herself, and makes you feel comfortable and welcomed in a place where you felt just the opposite.

Young Life Capernaum is that person for teens and young adults with disabilities. Except it’s not a party their attending, it’s life. These friends with disabilities are often left as the outcasts of our society and even the church (shame on us). They are made to feel as if they don’t belong, don’t fit in, and aren’t welcome here on this Earth.

First thing I want you to do before reading any farther is watch this video, I’ll wait...

I was going to try and explain what Capernaum is myself but then I found that video and it pretty much stole the words out of my mouth, but then actually organized them in an understandable fashion.

This summer I had the opportunity to to travel to North East, Maryland with Metro Baltimore Capernaum for Young Life camp. Now for those of you who have experienced Young Life camp, you know what I’m talking about. For those of you who haven’t, you don’t know what you missed. I attended Young Life camp at Rockbridge as a WyldLife camper in middle school so when my parents said they were sending my 16 year old brother (who has Downs Syndrome), I simply stated that if he was going, I was going too! But I don’t think I could have ever expected to experience what I did. It’s so hard to describe and is one of those things you just need to go experience yourself to get the full effect.

Having a brother with special needs means that whether I wanted to or not, I’ve been around someone with a disability. I’ve always been fairly comfortable around those with disabilities and I had attended a few Capernaum club meetings with my brother (good old college kept me from being a regular attender) and one day camp, but I honestly was unsure of what to expect. Here’s a little run down of what you could expect if you waltzed into a Young Life camp during a Capernaum camp week.

You should expect to be welcomed with open arms. You’ll laugh within about 2.5 seconds after getting in the car or bus to head to camp. You should expect to not stop laughing till you return home. You’ll be the best friend of every camper in the cabin before you even unpack. There is a good chance you’ll be late for almost every meal, but it’s Capernaum and “this is how we roll.” (Did you spot in the video the green “This Is How We Roll” t-shirts in the video with the handicapped symbol on them? They say “Friends Don’t Let Friends Miss Young Life Camp” on the back.) Expect to learn new ways to eat food and creative uses of utensils at meal times. You should expect no experienced leader to be phased by this. You should expect to drink lots of coffee. If your not a coffee drinker you will become one because it’s the only source of caffeine at camp.

Be prepared to get your dance on all. the. time. You will dance into camp, into meals, during meals (be prepared to fist pump when the song signaling an announcement is played), out of meals, into club, during club (which includes a 30 second dance party, of course), out of club, to activities, at activities, in your cabin, and basically all. the. time. Expect to see some really creative forms of dancing. No one cares if you have two left feet, so expect to dance with all you got. You should expect to have to use some unorthodox methods to get campers back to cabins for bedtimes. You’ll be exhausted at the end of each day beyond belief.

Expect to experience life in a whole new way.

Expect to experience joy beyond belief.

Expect to experience God.

Expect to feel comfortable.

You are in a village of comfort after all.

Oh, and you will get pied. It happens.

On the last night of camp there was a camper who refused to pack. She didn’t want to go home. I tried to explain that we needed to go home because it was some else’s turn to come to camp but again she told me she didn’t want to leave. Then she told me why. She said all of her friends were here, peopled liked her and she had fun. She said at home she didn’t have friends.

I wanted to cry.

This place was a village of comfort for her. A place where she felt loved and accepted for who God made her. No one judged, no one made fun. No one made her feel left out and rejected. Instead she had friends, people who loved her. She was told she was made perfect in the image of God, she was not a mistake.

Her response also left a nagging question in my mind. Why isn’t the church this place for those with disabilities? About 20% of our population has some sort of disability, so shouldn’t your church population reflect that? Isn’t God for everyone? Is your church looking for a mission field, an unreached people group? Try your own backyard.

Someone asked me if it was weird or awkward being around so many people with disabilities all the time for such an extended period. To be honest, you forget about it after a while. We just all blend right together, each his or her own unique person, yet all a family at the same time. It becomes a bit of a norm and you just don’t notice anymore. Camp become a village. One where everyone is loved and accepted and their differences are not the first thing you notice. You’ll feel comfortable really quickly.

Working with some of God’s most unique creations is probably one of the most rewarding things you can do. Sure it’s exhausting, unpredictable, and sometimes chaotic, but that’s part of the blessing. If your looking for a new way to see God, I invite you to go experience Capernaum. If there is not a Capernaum club in your area then I invite you to go start one. You won’t be sorry you did. I promise.

Click here to find out more about Young Life Capernaum and search for a club.

To see a Capernaum Leader profile click here (he sums it up well).

To view more pictures from my camp trip click here.

The 2010 and 2011 Capernaum Baltimore Day Camp videos will give you another glimpse into Capernaum.

Morgan is a 2010 college graduate who is still searching for her dream teaching job. She has the privilege of sharing a home with a whiny Sheltie and a cat who acts like a dog in Baltimore , MD. Her parents and younger sister and brother also live there. Morgan enjoys photography and sewing in her spare time. She's also taken up snowboarding during the winter months thanks to her boyfriend of 6 years. You can find her on her blog or on Facebook.

Choose this day whom you will serve; thoughts on wanting to serve myself

2011-08-11T09:17:00.004-05:00

¹⁵ But if serving the LORD seems undesirable to you, then choose for yourselves this day whom you will serve, whether the gods your ancestors served beyond the Euphrates, or the gods of the Amorites, in whose land you are living. But as for me and my household, we will serve the LORD.” -Jushua 24:15

Can I just be honest a minute?

Serving the Lord today seems undesirable to me.

I'm tired of summer. I know I am not supposed to say it. I am supposed to be thankful for the time with my kids. I am supposed to be like those moms who grieve the school year, because they can't spend their days with their children.

But today, that's not me.

It's 9:33am, and so far Polly already peed on my bed (potty training). Evie tried to bite Zoya and when I took her and cupped her face in my hands and gently said "no," she reached out and scratched me on the chin. Elaina woke up raring to go: "When we are going to the store? What we are buying for the trip? What will our day look like?" I am struggling with sadness, and as I write this they are all in the playroom, and a fight is starting to brew.

I know enough about God to understand that he wants me to do well with what he has put in front of me to do. Today, my agenda includes caring for the kids, picking up around the house, and packing for our trip to the cottage next week. None of this is insurmountable. It's all very hum drum, normal, every day life, really.

But I don't want to do it.

I'm tired.

I just want school to start.

Choose this day whom you will serve...

I have a choice. I can choose to serve myself and attempt to shoo the kids away from me like flies all day long. Or I can take a deep breath and stop and say a prayer. I can ask God to help me not to get overwhelmed, to be diligent in potty training and to think of other ways to appease Evie's rage (biting, scratching, lashing out).

Even If I want to go back to bed, I can still choose the right thing.

Today I can choose to serve God by serving my family.

As for me and my house, we will serve the Lord.

Elaina update! My rocket child

2011-08-09T08:06:00.010-05:00

It's taken me longer than I planned, but here's the final update on my kids.

Elaina: almost 11 years old, performing as Galinda in "Wicked"

Elaina will be eleven years old at the end of September. She's our oldest and I have always described her as a rocket, shooting out into the world. Everything she does is at a hundred and ten percent and at a hundred and ten miles per hour.

As a baby, she cried between four to seven hours a day for six months straight. Now I know that she just wanted to get going with life. Once she could crawl and then walk, the crying stopped.

It's something about my first born... every time she performs in public; singing in an end of the year recital at school, helping with the worship team at church, dancing at the local, weekly ballet class... that makes me want to plop myself down in the middle of the venue and cry buckets of tears.

I cannot believe I have children. I cannot believe that God would trust me with them. I can't believe they are not only surviving, but thriving under my care. Seeing Elaina burst forward into life always shocks me. I'm her mother. This compassionate, stubborn, fun, somewhat anal person is my child.

We moved to Ukraine as missionaries when Elaina was just 2 and 1/2 years old (Zoya was 9 months). I struggled to acclimate to life as she picked up Russian like it was Sunday's paper on a leisurely Monday morning. She transformed into a little Ukrainian girl: speaking the language, eating the food, laughing at the jokes, as easily as a well loved transformer doll. I, on the other hand, resembled the Tin Man in the "Wizard of Oz" in search of the magical oil can to help me move.

When she was around four years old, I signed Elaina up for a ballet class down the street from our house in Kiev. Twice a week she got dressed in a serious black leotard. I worked at slicking her hair back into a tight bun in an effort to make her look like all the other Ukrainian ballerinas.

The teacher was mean. She barked out orders: no smiling!, stand up straight!, don't look to the right or left! and I stood outside the door in the cold, old Soviet building worrying that I was messing up Elaina's little self esteem for life.

On the morning of her ballet show (it really just was an open class), Sergei and Zoya walked down to the nearest store and bought her one bright pink flower. We settled into seats in the classroom and waited for the music to start.

And then it did: the music lurched forward and a line of unsmiling, concentrated Ukrainian four and five year olds dashed out into the center of the room. The moment I saw Elaina: my daughter, who at that point was my hero, dancing in a foreign country, no longer foreign to her, I started to cry so hard my whole face was wet. I tried to calm myself down. But as I watched her, looking intently out of the corner of her eye, and trying to follow her counterparts to a T, I was overwhelmed that this was my daughter, dancing into life, unafraid, secure.

And that's just how it is with Elaina. I watch her move confidently into life with grace and strength. Oh sure, she's a bit obsessive; she has been called bossy from time to time and she stresses over straight As in school. But even in her personality flaws I am learning from her. She is forgiving of herself and others. She loves God. She's talented. She's kind.

Last week, Elaina starred in a production of "Wicked", put on by a Chicago Park District summer camp. She was Galinda, the good witch.

I found myself once again, sitting in an old building with butterflies in my stomach, waiting to watch my daughter do something amazing and scary. The moment I heard her voice in the song "Popular," I breathed in deep in my gut and let the breath sit there inside me for a moment. Her voice filled the room and I blew out slowly.

God has blessed me with Elaina. He has blessed me with all four of my daughters. It's hard work and I complain too much about motherhood. I fail; I yell, I get angry, I get bored. But times like that, when I watch one of my children intrinsically connected to me, step more into her own skin, it's sweet. I can't quite describe it. It's like pieces of hard candy coming down to me from heaven.

Friday Feature: Why don't parents who adopt do more? By Leah Spring

2011-08-05T09:12:00.009-05:00

Thanks to Leah from Garden of Eagan, a follow mother to kids with Down syndrome and an adoptive mom, for letting me snag her wonderful blog post for today's Friday Feature. I read it first thing this morning, and was challenged and convicted to do more for Evangeline. I've always loved the way Leah shoots from the hip. Enjoy!

Leah with her son Axel

A bloggy friend of mine wrote a blog post this morning that I found interesting, and caused me to think again about some things I've seen in the community of international adoption over the last couple of years.

Adopting Children with special needs

It goes back to adopting children who have specific medical diagnosis such as Down syndrome, CP, etc. I KNOW Ds. Not only did we have an older child with DS when we chose to adopt, but I had spent years working with and around both adults and children who have DS. I can look at many children adopted out of institutional settings who have DS and tell you "that's institutional behavior" or "that's just a Ds thing." Not always, but much of the time. It's just part of knowing Ds, I guess. I've never seen anything Axel does that has left me wondering which it is (Ds vs. institutional behavior) but I have wondered what he's input he's looking for in various stimming behaviors. I guess it's safe to say that our comfort zone is in the world of DS.

When we chose to adopt, we started the process for a child who has Apert syndrome. I know a little about AS from previous experience, but I didn't know a lot. Dean had never heard about it so knew nothing about it at all. I started digging. Dean started digging. We both sat on our own computers researching AS. Dean made connections with other families who were raising kids with AS, and I did the same. We found there is a family who has an adult daughter with AS at the new church we were attending. We felt like we had an idea what to expect, and which specialists we needed to line up in advance of bringing this child home. We knew there were lots of very painful surgeries, and having been a mom who has dealt with a lot of post-operative wound care, I understood what that involved. I understood what it's like to see my kids in physical pain after surgery. We also looked at our proximity to medical care necessary for a child who has Apert syndrome. We live close to all of it. And isn't it funny now that we're going all the way to Philadelphia for Axel's AAI? But that's my point I guess...the ability to access the specialists needed. Anyway, in the scheme of things we felt prepared. There would still be surprises, and struggle, but we had prepared as much as possible without actually having the child to care for.

In the end that isn't the child we brought home. (Someday maybe we will, it hasn't been for lack of trying on our part!) Instead we brought home Axel, who had no known medical issues. (pretty unusual for a kid with DS, and foreign to me since Angela has almost everything a kid with DS can have. LOL) But we also knew that Axel's little body was probably hiding some secrets, and boy was he! Still, once we're done dealing with his neck he still has a few minor medical things to address. These were put on the back burner as soon as we found out about the AAI, like getting his tear ducts cleaned out so his eyes aren't constantly watering.

Why don't parents who adopt do more research?

So while reading other adoption blogs, I'm a bit shocked when I see people who've never parented a child with complex needs adopt kids who have just that, or big name diagnosis, like DS, and they do NO research about the issue. Like, nothing more than light reading. They're still in the "Kids with Ds are so sweet!" mindset. (Angela will dispel that myth for you, by the way.) Probably part of the reason this is so confusing to me is my nature is to dig for information. I am a research junkie. I've seen families who have older kids who are non-verbal not give them any way to communicate, either sign, a device, PECS or anything. Now if their child won't use them, that's one thing, but some don't ever bother to try them. Not because they don't have the resources, but because they don't want to. Really? REALLY! Like the child they've brought home will NEVER go out in the world and have to communicate his wants and needs to anyone other than his or her parents. REALLY?

Why don't parents who adopt do more in general?

Here's another issue that I'm seeing more of: Families who adopt children with complex medical needs, but they happen to live quite a distance from the key medical facilities they will need to frequent with that child. That's fine if you are comfortable driving the distance. I did it for years with Angela before moving to "the cities". I had to learn to be comfortable driving downtown, and through the worst parts of the city since all the children's hospitals seem to be located in the highest crime areas. (Why is that anyway???)

What I have seen are parents posting things such as "There is just no way we are driving back and forth to the city once a week. We don't have time for it, and besides, I am not comfortable driving in the city." Really? So you bring a child home who needs medical care, and just don't do it because YOU don't want to? Didn't you know when you adopted this child how much TIME all the medical stuff takes? Doesn't that fall under the realm of medical neglect?

I have seen other parents refuse therapies for their newly adopted children because, "We accept them just the way they are." I'm sorry people, but while it's great that we love our children, and yes they are now getting FOOD, a FAMILY and LOVE, there are other things too, like speech therapy, occupational therapy and for some kids feeding therapy that they may need to overcome the delays caused by their years of severe neglect. I have a lot of friends who have turned down early intervention services for their biological children who have special needs. I "get" the intrusiveness they're avoiding. But when we bring these kids home out of institutional settings, this is more than just trying to help a baby keep up with their peers. This is YEARS of catch up. We cannot expect that our children will stay with us forever and never want to get out on their own. What child wants to live with their parents forever? Not only that, but we, the parents, could get hit by a mack truck tomorrow. Our job, as a parent of ANY child, is to help them reach their FULL potential so they can function in society as independently as possible. That's our job, weather our children are typically developing or not. NOBODY wants to be dependent on anyone else, and our kids who have disabilities are no different.

Jumping down off my totally judgmental soap box now.

Read more from Leah at her blog, Garden of Eagan.

Weekend with cousins in Michigan!

2011-08-02T10:00:00.004-05:00

This weekend we were in Michigan.
My brother and his family were in town from California. There was sun and swimming, pontooning, and playing. Elaina and Zoya went tubing off of Grandpa's fishing boat!
We had a great time! It's fun to see all the cousins together. I'm thankful the California contingency comes out to Michigan for a couple of weeks every year. Even though we live far away, the cousins know one another well.
So much fun!

Zoya showing her moves on the water.

Elaina right before she got dunked at a picnic by her cousin Eli

Polly and Evie and their cousin Kendall enjoying the kiddie pool

Kendall and Polly were enthralled with an ant hill of sand

Evie loves the water! And she shows no fear. She spent a lot of time in the kiddie pool, but also swam out in the middle of the lake with me and Serg off the pontoon boat.

Polly got tired. That really good, playing all day with family in the sun, tired.

Friday Feature: A word picture of acceptance, by Marlene

2011-07-29T08:56:00.000-05:00

Big thanks to my friend Marlene for being this week's Friday Feature guest blogger!

Hi, I’m Marlene. I’m not a blogger. I AM a fan of Gillian. And I love to share my life with my daughter with others, hoping to show, little by little, that life with Down syndrome is better than you might think!

My 7 year old daughter, Aleena, is our one and only, born to us 2 months before our 15^th wedding anniversary after years of infertility. I found out at her birth that she had Ds. I struggled. A LOT with that diagnosis - especially after so many years of infertility. But, I was so blessed to find a community of parents online who all have a child/children with Down syndrome. They showed me the beauty, hope and promise of this new world. That has made all the difference and now I share the beauty, hope and promise of my world with others.

Aleena is going into 2^nd grade this fall. She goes to our local elementary and is in the regular ed class with a one/one aide. Inclusion is very important to me. I worried, though, how she would be accepted by her classmates. During a visit to school this past June, I was out on the playground chatting with the teachers. I just happened to catch this beautiful moment – unfortunately I did not get a picture, but I’ll paint the picture for you with words.

Two little girls, walking arm in arm across an empty portion of the playground.

Two little girls, somehow dressed exactly alike, wearing bright pink t-shirts and denim shorts to the knees.

Two little girls, arm in arm.

One with black hair, one with blonde.

One black arm, one white arm.

One typical little girl, one little girl with disabilities.

Walking arm in arm to the jungle gym.

What a beautiful Moment.

A picture of Friendship.

A picture of Acceptance.

Beautiful in so many ways.

Zoya update

2011-07-25T07:37:00.007-05:00

Zoya, 9 years old

I've decided that a good analogy for a nine year old girl is the board game Risk. Let me explain...

For six weeks of the summer, Zoya is going to a day camp where she gets to swim and do crafts and go on field trips.

Every day she battles mean girls and mosquitoes. Some days she conquers small worlds of kid clicks and places her signet ring stamp on new territories, marking parts of the park like the terrain of a giant Risk board. Other days, she chooses to sit quietly to the side and eat a small bag of Doritos instead.

I love this about my daughter. She has boundaries.

Growing up is difficult. I worry about my girls. "Mom, she doesn't like me!" "Mom, that boy said I have chicken legs." "She told the other girls not to talk to me."

So far, though, Zoya is maturing with ease. She's a kid with imagination and boundaries. If a few girls are fighting around her, she simply removes herself. I didn't figure out how to navigate hard situations like that til' at least my late twenties.

If you were to meet Zoya for the first time, you may find her quiet. Her heart seems to wear a hard hat. But don't worry. It pumps steadily underneath its protective cover. It pumps compassion and street smarts. It pumps adventure and loyalty.

When we switched around rooms upstairs, Zoya got her own room and was able to pick a few new decorations to make it distinctly Zo. She chose a travel theme, and has a picture of the Eiffel Tower in Paris, a constellations map, and stickers showcasing New York City and London. She has taped a piece of paper onto the wall, a list of ten places in the world she wants to visit when she grows up. A few places noted: Madagascar, The North Pole, Australia.

"Mom, don't tell Papa I asked you because I already talked to him about this three times and he said that I need to stop asking, that we would wait and see, but, will you buy me a ticket to Paris when I graduate from high school?"

Zoya is growing in her relationship with God. Almost every night we, as a family, read a passage from the Bible and talk about it. We say a few prayers. Zoya's comprehension of the stories has really grown. Last year around this time, we'd have to remind her to pay attention and quiz her afterword to ensure she wasn't busy focusing on something else (like a piece of string) during our family time. But this year, after the story is read, she provides great summaries. She answers questions in light of Jesus.

Zoya is not the nine year old poster child. She's a tad lazy, and will quietly get out of chores by slipping up to her room to read or make packing lists for future adventures. If there is only one Popsicle left in the freezer, she'd take it for herself in a second. But I am having a great time parenting her. I learn about resilience and quiet contentment from Zoya. She teaches me that I have the power to simply remove myself from hard places. And my imagination has grown by leaps and bounds from her proximity.

Friday Feature: Mothers be Good to Your Daughters, By Becky Daye

2011-07-22T07:46:00.006-05:00

Big thanks to this week's Friday Feature Blogger, Becky Daye. Read more from Becky at her blog Daye by Daye.

My daughter is going into 3rd grade in the Fall. I am excited for this year in her life. This past year has been difficult for her and my prayer is that a new school, a new teacher and new friends will be wonderful for her.

She is strong willed. That might be putting it mildly! She is full of creativity and is constantly thinking of new things to do and act out. She talks nonstop and often shares her thoughts that she should probably keep to herself.

As her mama, it is tiring! I want her to express herself and be who God is making her to be. But I see the looks in friends eyes or I see those same eyes roll and each time I find myself trying to correct her speech or explain her actions to a bewildered crowd.

She's creative! She's intelligent! She's strong! She's a leader! But they see strange. A know-it-all. Opinionated. Bossy.

I wish there was a formula for moms- that just being good to your daughters was enough.

This past year of difficulty has taught me a ton about being my daughter's mom. I am learning to truly lay my concerns for her at the feet of Jesus. I am striving to pray more and correct less. I am learning to focus on the strengths of her personality and I am learning to trust God with her weaknesses.

The most important lesson that my Heavenly Father is sweetly teaching me is that HE is enough. HE is the one who made my girl. HE delights in her. HE has a plan for her.

If I truly believe this to be true, then I have to release my desires to change her and to make her respond the way that I want her to. As I release these things, I begin to see the work of the Holy Spirit in her life.

We had a sweet time together this past week as we snuggled in her bed at bedtime. She cried a little and told me that she was so thankful that I was her mommy. As I breathed in the sweetness of that moment, I thanked my Father for His work in my life.

HE is the one who is making me and shaping me into the mom that he wants me to be. I'm growing right along with my girl.

There isn't a formula for how to raise the perfect child. But there is a God who promises to lead us and guide us along the way. And every once in awhile, He has a way of reminding us that HE has the power to change hearts.

Thank you Father for your work in my life. Thank you for changing me and making me into the woman that you want me to be. Thank you for the work that you are doing in my daughter's life and for the sweet reminders that you have a plan for her! Amen.

Interested in guest posting at Pocket Lint for a Friday Feature? Email me at gillian@rcn.com. Let's talk!

Polly Pizazz!

2011-07-20T12:32:00.001-05:00

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

2011-07-20T08:13:00.008-05:00

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.

Update on Evangeline

2011-07-18T11:13:00.016-05:00

I haven't given a Marchenko family update on Pocket Lint in quite a while. So, here goes!

I will take a day to cover each kid; or else this post will be longer than Santa's Christmas list of who is naughty or nice. I think I'll go youngest to oldest.

Let's start with Evangeline: four years old.

First: The Business...

We've recently completed her yearly specialty appointments: vision, hearing, dermatologist, general pediatric. What else? Oh, we still need to get her in for a spine x-ray because she has a small, but stable gap between two vertebrae that deserves a yearly check up.

Everything looks good. Evie doesn't require glasses. She hears well. She's healthy. We're thankful.

Evie is non verbal. She does not use sign language, but did start to wave bye consistently. When she is hungry, she goes to her chair and climbs in. She gets her coat and brings it to us when she wants to go outside. Sergei noticed she keeps eye contact more often and for longer amounts of time. She smiles a lot. Her laughter is high pitched and sweet. We are encouraged.

Evie completed four weeks of summer school and now has a break until preschool resumes in September. She is out of her crib and into a big girl toddler bed in the room she shares with Polly. She likes musical toys and hand over hand activity to sing songs and she absolutely loves swinging at the park and at home in her therapy swing.

Seond: The Bonding...

It's still hit or miss with our bonding. Honestly, I am sad about it. Some days I think, we got this!, she loves me and I love her and all is right in the world and other days she's the nonchalant love interest and I'm the brooding teenage crush. I crave her attention. She blows me off.

Our mother-daughter dance is memorized; two steps forward and one step back. She is learning how to be a daughter. And I am learning how to be her mother.

Overall, Evangeline is comfortable in our family. She loves to play with her sisters and has a precious relationship with Sergei. She brightens when he comes into the room. If he is sitting reading or watching a show, she climbs up into his lap for a hug.

My relationship with Evie reminds me of what it must be like for God to have me as his child. I often ignore his loving attention. He has all this goodness to share but I am too suspicious to let him in. All God really wants me to do is come quietly and climb up into his lap. And yet, most of the time, I choose to sit off to the side alone.

Of course, the comparison doesn't pan out. I am so not God, and God is not the type to sulk when I ignore him. And Evie is not the problem child. She is just a little girl learning to love.

I am an impatient mother who wanted love at first site, but got real life instead.

Evie has been home two years and I am still frustrated with our relationship several times a week. I want us to be farther along by now. I look around at other adoptive moms and assume they are better at this than me. I so want to be passed the dating stage with my daughter.

But sometimes I look at her, and she is smiling or laughing or thoughtful, and I am blown away that I get to be in her life. I learn from her. She is the mirror God knew I desperately needed to realize hard truths I choose not to look at about myself.

She could be sitting in an orphanage alone somewhere. She could be sick, or sad or even dead. Instead, she just went to the grocery store with Sergei and will go for a walk with the rest of the family later today. She is here, with us.

She is right where God wants her to be.

And for that, I am glad.

(Interested in special needs adoption? Go to Reece's Rainbow to learn more)

Friday Feature: Widowhood is my calling, by Noel Nail

2011-07-15T07:36:00.010-05:00

A big welcome to my dear friend, Noel, who was brave enough to be the first Friday Feature writer at Pocket Lint. Thank you, Noel, for your poignant words and for your brave heart. Love you!

Noel with her late husband Sawan and their dog Arthur

I’ve been a fan of Gillian’s blog for a while now, but I’ve been a Gillian fan since 1996. We met when she was one of the cool, single adults on the team of Americans that my family went to Ukraine with, and I was just a 17-year-old kid.

If you were to look at our lives, I think you’d be hard pressed to find similarities. She has been married for thirteen years. She is a mother of four beautiful girls. One adopted. Two special needs. Her days are filled with doctors’ appointments and play dates and laundry and caring for a family.

I’m a young widow. I’m a hairstylist. I work at a cute little salon and try to fill my life with as much distraction as I possibly can. I have arranged my life so that I only do 3 loads of laundry a week (that’s just mean, Noel, you shouldn’t brag about such things). The highlights of my week are what’s on TV (I actually have time to watch it. STOP, Noel, they’re going to hate you!) and how many bugs I’ve squashed in the Victorian home I just moved in to.

But I actually think there may be quite a bit of similarity, beyond just us both writing a blog.

In August of 2009, my whole world got turned upside down. The story that I had written for my life was right in it’s middle. I was happily married. The man that I loved and I were just about to start a family. I was just managing things at work to go down to an easier schedule. Finances were going to get better. We had a plan.

And then I came home to wake him up from a nap and he had died in his sleep.

Now, two years later, I’m trying to figure out who I am again. I’m no longer reeling from loss, at least, not like I was in the beginning, but I still struggle daily with thinking “this is not the life that I imagined.”

I would venture to guess that a lot of you feel that way, too. I don’t think that it takes losing your husband to get that dreams don’t always come true, that life doesn’t always turn out the way you plan for it to.

The beauty for me has been the way that it allows me to relate to others. Because I have experienced deep pain and loss, I can relate to others who are grieving in a more meaningful way, understanding that I don’t “get” their personal pain, but being able to just be with them in their grief, and to just hold their hand as they walk through it. I think that people feel that they can talk to me more about their pain because they know that I do “get” pain. I have had conversations with hairstyling clients and friends about a little of everything: miscarriage, the inability to conceive, losing a father, losing a job, divorce, and with other young widows as well, where I can just listen and encourage. I am still here. I’m surviving. I’m the visual aid.

Widowhood for me has been a calling. A calling to a “big-ness” in my soul (Is that even a word?). I want something good to come from all of this pain and loss. I want to have gone through all of this, to come out the other side and know that Sawan (my husband) changed me. Our love changed me. Losing him changed me. I want it to count for something. It’s still a struggle to learn this new life without him.

But, there are good things that are coming from it, as well. This “bigness” is something that I think about regularly. I picture it in my mind…like a warm, inviting cave in my soul, that gives shelter to the wayward hiker caught out in a storm. It leaves room for “gray area” in emotions (I can be unbelievably happy and yet devastatingly sad...all at the same time). It has lots of room for grace. Grace has been a huge thing to learn in dealing with this loss. I have to be so gracious with myself on a regular basis. It’s so easy to beat myself up. To think, “Noel, you had such plans. You were so stupid.” But also, to be gracious with others. People say the wrong thing so often. But I practice thinking the best of people. They’re certainly not trying to hurt me. They are trying to be loving. They don’t know what to say. So they try. And I give grace. And although sometimes it’s no fun, I like the new me. I like the practice and the grace and the bigness. I wish my husband, Sawan, were around to see it.

What I know about grief is this: We’re all doomed. On some level, we’re all going to experience loss of dreams. Pain. Suffering. Life doesn’t always turn out the way we plan. But there’s hope! You have strength you never knew was there, and, you can enjoy the “bigness” in your soul, too.

Check out Noel's Blog, Good Grief: A young widow's journey, here.

The Beautiful One Has Come, Stories by Suzanne Kamata book review

2011-07-11T10:12:00.001-05:00

The more I dip my feet into the ocean of writing, I am surprised by others in the water; gracious, talented writers willing to share a little insight and provide encouragement.

A great writer is far better than a rock star (sorry Bon Jovi, I still love you). So I'm blown away when a fabulous writer not only accepts my friend request on facebook, but also returns an email, or answers a question or two, and points me in the right direction with my work. These writers are night lights helping me stumble along, illuminating a very dark hallway known as the publishing world.

Suzanne Kamata is a night light author for me. I'm a huge fan of two anthologies Suzanne edited. In fact, I keep both next to my bed.

Love You to Pieces: Creative Writers on Raising a Child with Special Needs

Call Me Okaasan: Adventures in Multicultural Mothering

Suzanne is a Michigander, living as an expat in Japan. She has a child with special needs and she's a writer! Our similarities make me a bit giddy. So when I heard she was looking for reviewers for her new book, I thrust my electronic hand up in the air.

It is my privilege to review The Beautiful One Has Come, Stories by Suzanne Kamata on Pocket Lint.

After reading the first story in the collection, I started to tweak my daily schedule to secure an earlier bed time. I couldn't wait to score a few blissfully quiet moments to jump into another story in "The Beautiful One Has Come." Suzanne is a gifted writer. Story after story confirmed the universality of real life, braided effortlessly with continents and struggles and humanity.

I lost my breath as I was eerily whisked back to Polly's birth while reading "Polishing The Halo," a story about an American mother coming to terms with her baby's disability while living as an expatriate in Japan.

Here's an excerpt:

Trina was wrapping up one of her hilarious tales about trying to find underwear in her size in Japan. Their laughter drowned out the Japanese pop music coming from the
speakers. When things had settled down, Trina leaned over toward Ana and clucked her tongue.

"Aren’t you the sweetest little baby?” she said in a high voice.

“She can’t hear you,” Kelly blurted out. “We had her tested. She’s deaf.”

The smiles died. Eyes dropped to laps.

Elizabeth was the first to recover. Oh, honey,” she said, laying her hand on top of Kelly’s. “Please. If there’s anything we can do to help, let us know.”

Kelly bit her lip, determined not to cry, and nodded.

“Things could have been so much worse,” Lisa added. “She’s perfectly healthy in every other way. She’ll be fine.”

“She can still be Miss America,” Trina chimed in. “Or an actress like that woman who won an Academy Award.”

“Sure,” Elizabeth said.”She can do anything. I heard there’s a deaf guy playing Major League baseball.”

I appreciated the gentle camaraderie between a straight, American woman and a gay, Hawaiian dance teacher in "Hawaiian Hips." And I loved "Woman Blossoming," a story about a young painter who seems to place her art behind her marriage to help her husband achieve greatness. She holds her talent close, though, and that one act of not losing herself proves to be all the fulfillment and provision one could ask for in life.

I am not much of a critic. The way I measure a good story is how much of myself gets lost and found in words. I can only get lost in words when the writing doesn't get in the way. I can only be found in writing when the story points to something in me that connects to another person.

If you were to ask me what constitutes a good story, my answer would be staying power. If I find myself thinking about a story days afterward, it is good.

Many of these stories still roll around in my mind.

Buy a copy of "The Beautiful One Has Come" here.

Here is Suzanne's biography from her website:

Suzanne Kamata was born and raised in Grand Haven, Michigan. She is most recently from Lexington, South Carolina, and now lives in Tokushima Prefecture, Japan with her husband and two children. Her short stories, essays, articles and book reviews have appeared in over 100 publications including New York Stories, Calyx, Crab Orchard Review, Pleiades, Kyoto Journal, The Utne Reader, The Japan Times, Brain, Child, Skirt!, Ladybug and Cicada. Her work also appears in the anthologies Yaponesia, The Beacon Best of 1999, It's a Boy, It's a Girl, Literary Mama: Reading for the Maternally Inclined, Not What I Expected and Summer Shorts. Formerly fiction editor of Being A Broad, a magazine for foreign women living in Japan, she now serves as fiction editor for the popular e-zine Literary Mama, and edits and publishes the literary magazine Yomimono. Her work has been nominated for the Pushcart Prize five times, and received a special mention in 2006. She is also a two-time winner of the All Nippon Airways/Wingspan Fiction Contest.

A Dream Deferred

2011-07-09T10:31:00.001-05:00

A Dream Deferred

By Langston Hughes

What happens to a dream deferred?

Does it dry up
like a raisin in the sun?
Or fester like a sore--
And then run?
Does it stink like rotten meat?
Or crust and sugar over--
like a syrupy sweet?

Maybe it just sags
like a heavy load.

Or does it explode?

Wordless Wednesday, What are you looking at? LINKY*

2011-07-06T02:00:00.000-05:00

"Balancing Expectations" in EFCA TODAY

2011-07-06T01:06:00.000-05:00

My article entitled "Balancing Expectations, Listening to both church leaders and parents" is up at EFCA TODAY, the Evangelical Free Church of America's magazine.

The article touches on the proper perspective I shoot for as a mom to kids with special needs, the pastor's wife, and also the children's ministry coordinator at our church. Check it out and let me know what you think.

If you are a parent to a child with special needs, what's been your experience with your church and your kids?

Menard's, an open can of paint & a cute girl with Down syndrome

2011-07-05T07:33:00.003-05:00

Fourth of July weekend, Elaina and Zoya and Polly went to my parents' house in Michigan. Evangeline stayed with us in Chicago. I got a tell you, having one child when you are used to four is great. Sergei and I thoroughly enjoyed our time with Evie. She seemed psyched to have us to herself as well.

So, when the other girls were in Michigan, we decided to do some painting and minor remodeling to the basement because my friend and her kids are coming to visit.

Saturday morning, three sets of friends from church came over to help paint. We turned on classic rock, passed out donuts and roller brushes and got to work. Sergei and I took turns hanging out with Evie upstairs because she didn't feel like painting.

After two coats of white paint in the laundry room, it was obvious one more was needed. But we were out of paint. So I volunteered to run to Menard's to get another can.

I took the empty paint can, because, well, I'm NOT handy and I knew I'd forget what to buy at the store, and it actually seemed like more work to find a pen and paper and write stuff down. I put the empty, open paint can in a very old beach bag in the car. I was set, had my paint, and was ready to make the purchase.

At Menard's, I found the paint and made my way to check out. In line, I saw a neighbor and we chatted about summer camps; the good, the bad, the ugly. And then, mid-sentence, I spotted a cute, little girl who had Down syndrome. She was with her parents (makes sense, she is two; Polly and Evie weren't allowed to go out on their own until they were at least four :). I excused myself from the neighbor (in retrospect, very rude. Should have stayed and chatted with him). I walked over to the family with the child with Down syndrome and introduced myself.

"I have two little girls with Down syndrome."

"Your paint is dripping," the mother said.

"Oh, sorry, here, let me get that." I looked down at my porous beach bag and noticed the opened paint can still had paint in it, and it was spilling out of the bag. It got on me. It got on the mother's foot. It got everywhere.

"Oh my goodness. So sorry. Just a second, let me find you some paper towel."

The story gets worse. I should have just said goodbye then. Something comes over me when I see families who have children with Down syndrome. It's like we already know each other. I have to hold myself back from hugging their children.

I went up to the check out counter and interrupted the person working there.

"Excuse me, do you have a trash can." I handed her the bag of paint before noticing that she was trying to ring up my neighbor. How embarrassing. I don't know him well. I'm sure he just wanted to get out of Menard's and here was his strange neighbor, running around flinging paint all over the place.

I went back to the sweet family with the cute little girl, gave them paper towels and tried to transition into mellow mom, just saying "hi." It didn't quite work. I was all jazzed up by then. I should have just complimented their child and moved on. Instead, words tumbled out of me. I got out my phone and showed pictures of the girls. I gave them my card. Sigh.

The family was accommodating and the little girl was smart as a whip and gorgeous but I think they really just wanted to shop.

Then, Sunday, after church, we had to do another coat of paint. Off I went to Menard's again. This time, I wrote down the information and left the paint can at home. But we needed sealant for the bathroom. I grabbed that empty tube and decided beforehand to adhere to the advice I give my kids, "don't talk to strangers."

At Menard's, I found the paint and the sealant and headed to the check out.

"Good morning, did you find everything alright?" The cashier asked.

"Yes, thanks. Oh, could you please throw out this old tube of sealant? I brought it with me to ensure I get the right replacement. I tend to do that, bring empty things to Menard's, that is. Like yesterday, I brought an empty paint can and got paint all over the place."

"That was you?" the cashier looked at me in wide-eyed astonishment.

Apparently, she worked yesterday and I was the crazy lady with the empty paint can, bothering their customers.

"Yes, it was. But, look, I've learned my lesson." I held up my scratch paper to show my notes.

The cashier smiled at me and laughed, shaking her head.

"Thanks so much! Have a good one!" I grabbed my supplies and my receipt and high tailed it out of the store.

I think next time I'll go to Home Depot.

And the Kindle Giveaway winner is...

2011-07-01T12:19:00.003-05:00

Ginette!

I emailed her this morning after random.org configured the winner. She was totally psyched!

And the book winner is:

Arielle!

I emailed Arielle but haven't heard from her yet. So, Arielle, if you see this, email me with your book selection and your address.

Thanks everyone for making Pocket Lint's first giveaway a huge success!!

I'm feeling the love :).

10 tips on writing a book (when you don't know how to start)

2011-06-29T10:09:00.027-05:00

I've received a few emails from people asking me how to write a book, which is funny because I don't have a book published (yet, God willing). It's like asking a person coloring in a Strawberry Shortcake coloring book how to paint a still life, but, anyway...

Here are the first 10 things that popped into my head about writing a book:

1) Start the project with a dangerously low self esteem.
This is vital. If you don't, you may not be able to handle getting knocked off the height of your perch daily from rejection. It's much easier to begin writing from the depths of despair.

2) If you have kids: get a lock for your bedroom door.
My reasoning is two fold: 1) my bedroom is where I write, and 2) my bedroom is where I cry when I am convinced that I cannot write.)

3) YOU PROBABLY NEED TO ACTUALLY ENJOY WRITING,
or at least be able to stomach it, if you want to embark on a long project. Seriously, in order to write a book, you have to spend countless hours writing, which may stop you up right there. Luckily for me, I love to write and see where it takes me. I also love to sit. Bonus!

4) Make sure your writing desk has an economy size box of Kleenex.
I cry a lot when I write. I cry over a beautiful sentence (both other peoples' and my own). I cry over the fact that I can't spell. And I cry over the things God has done in my life as they are rendered on the page.

5) Listen to Papa Hemingway.
Your goal is one true sentence. Sometimes when I am writing, a sentence strings together perfectly and sends shivers up my spine. One true sentence is the payback you get for locking yourself in your room to write. It's more than money in the bank (well, I don't really know b/c I don't have money in the bank, but...).

6) Read books.
Readers tend to write well. Read in your genre, but generally too. I've read some wonderful memoirs this year, Hope Eldeman's "The Possibility of Everything", "Let's Take the Long Way Home" by Gail Caldwell and "An Unquiet Mind" by Kay Redfield Jamison, to name a few.

And don't forget to read books on craft. For memoir, I love Vivian Gornicks, "The Situation and the Story" and Anne Lamott's "Bird by Bird."

7) Join a writing class.
If you are a part of a class that submits and critiques work, then you will be forced to write. I attend a memoir workshop at Story Studio here in Chicago. I love it. The instructor is knowledgeable and kind (check out her blog: Memoir, Writing & Life) and the writers are not only gifted, but wonderful at critique. Plus, there's food and drinks!

8) Buy business cards on-line and slap writer under your name.
This really helps! Call yourself a writer. Even if you don't have anything published, if you write, you are a writer. Technically, you may not be an author until you are published, but by golly, you are a writer. Don't be shy. Put it out there! (and if you buy 250 business cards and have no one to give them to, the kids love to make up card games with them.)

9) Call or text or email people who love you, often.
Writing is solitary. You show up and put words on paper and wonder if you actually have anything of value to offer the world. Call your mom, or your best friend, or Joe, the creepy guy at Starbucks who saw you writing one day and gave you his business card. Call anyone who loves you (OK, maybe not Joe) and ask them for encouragement. You need cheerleaders in order to write a book. So buy some pom poms and pass them out to friends.

10) Don't start writing if the only thing you want is attention.
Believe me, an easier route for attention would be to hold up a Seven Eleven, or something like that.

"All you have to do is write one true sentence.
Write the truest sentence you know." - Ernest Hemingway

If you are a writer, how do you start a big project?

Leave a comment with your blog url. I'd love to know how many writers are reading Pocket Lint. And I want to follow your blog :). Thanks!

Wordless Wednesday, Summer Fun LINKY, 6/29!

2011-06-29T07:03:00.007-05:00

I ask you: What's more fun than a hot day and a furniture box?

And don't forget about my Kindle giveaway!
It ends Friday, July 1st!!

13 years today!

2011-06-27T08:59:00.006-05:00

Happy Anniversary to my husband, Sergei.

When a writer has no words... you know it's love.

Evangeline then, Evangeline now

2011-06-24T07:53:00.007-05:00

On June 24th, 2009, we stood in a court room in Ukraine before a judge, and were granted the legal request of making Evangeline our daughter.

Two years ago, today.

Where does the time go?

The last two years have been up and down. Sometimes, Evangeline feels like the very fiber of my being, and other days, I still wonder if her mom will show up to take her home.

But I love her. God is teaching me so much about myself, and about him, through her.

She is a precious child. Worthwhile, valuable, purposeful.

Thank you, Lord, for bringing her to us.

Evangeline's been a Marchenko for two years!

2011-06-23T20:32:00.001-05:00

Make video montages at www.OneTrueMedia.com

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

2011-06-22T15:32:00.008-05:00

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...

Wordless Wednesday, Daddy's Special Day Linky

2011-06-21T20:24:00.009-05:00

*DON'T FORGET TO ENTER MY GIVEAWAY!

KINDLE GIVEAWAY!

2011-06-21T17:56:00.016-05:00

THIS GIVEAWAY IS CLOSED!

The votes were counted and the Kindle won!

Hurray! It's my very first giveaway on Pocket Lint!! Exciting :).

WOULD YOU LIKE TO WIN A KINDLE??

Here's how to enter:

Main Entry: Like my author page on Facebook Gillian Marchenko - Author - Chicago, IL

Extra Entries: (each extra entry gets you another chance to win the Kindle)

Follow me on Twitter, GillianMarchenk

Follow Pocket Lint on Facebook Network blogs

Subscribe to receive my articles about special needs at Examiner.com

Subscribe to Pocket Lint via Google reader

Publicize this giveaway on any site and in any way and leave me a comment that you did (on your blog, tweet it, post it on your facebook profile, etc.)

IMPORTANT! LEAVE ME A COMMENT HERE FOR EACH ENTRY, SO THAT YOU GET ALL YOUR CHANCES TO WIN!

And a bonus prize! What? You betcha!

A second winner will get their choice of one of my favorite books to date about Down syndrome. Go to my post here on Pocket Lint about my favorite books and leave me a comment saying which book you would want to win for another entry to both prizes!

This giveaway is open to readers in America and in Canada.

I will choose the winners on Friday, July 1, 2011 using random.org.

I'm looking to do a give away on my blog...

2011-06-20T12:13:00.004-05:00

And I need your help!

Leave a comment and vote for one of the following prizes.

Voting happens today... So comment right away :).

Three prize options:

Kindle

Ipod Nano

Canon Powershot

And if you have any clue how to set up a give away in an effort to gain readership and twitter/facebook followers, um, help a girl out and share some tips.

How my Dad pointed me to God

2011-06-19T08:44:00.006-05:00

Here's a short excerpt about my dad from my memoir, "KRASATA." Happy Father's Day, Dad!

I have this memory from the day I moved into the dorm my freshman year of college. My dad wasn’t thrilled with the idea of Bible College for me.

“What kind of job can you get with a Bible education? You need to learn something marketable. I had hoped you would go into journalism, maybe consider helping out at my newspaper later in life.”

He consented though, after learning that the college was tuition free, a two-hour car ride from home, and that I would major in Communications and minor in Bible.

The day I moved in to the dorm, after my brother-in-law Bill, a friend, and my father had moved everything up to the eighth floor to my room, mostly without elevator assistance, my dad and I stood in the foyer. We were trying to say goodbye,but both of us were distracted. Another family near us had formed a circle by holding hands. They bowed their heads and the father began to pray. My dad looked at them and then looked at me.

“Come here, Gill,” he said, sweeping his arm towards the hallway. I followed him out the door.

He put his hands on my shoulders while other new students and their families walked by, some turning around to see what we were up to. “Now, I know this is a big step for you. Do well, and, um, call us if you need anything. And, uh, here’s twenty bucks.” He handed me a stiff twenty dollar bill and kissed my cheek. Even though we don’t share the same core beliefs about God and the world, I was assured of his love and support that day, as I have been for my whole life.

While I hugged my father after our long trip back from Ukraine with our newborn daugther who had Down syndrome, I imagined that we were in the corridor of another huge shift in my life: we were stepping into the world of special needs, and the hug evoked similar stirrings in me, as it had on the first day of Bible College. Although my dad didn’t understand what it felt like to have a child with a disability, his presence was a sure thing. He would be there for me through this transition and he would love our baby more than life.

Part of God's plan for my life was to provide me with a dad who loves me and supports me unconditionally. When I was sixteen years old and my friend told me that God was someone I could trust, that he was a good heavenly father, it was no stretch of the imagination to believe her. I believed easily partly because of the stability and love I receive from my Dad, love that provided me a quasi-healthy self esteem (I mean, I am still a girl and I hate my jello-like tummy) and the belief that I am valuable. My Dad has always made me feel like I wasn't alone in this life.

I don't take this gift lightly. I know many daughters do not have these thoughts about their fathers.

And today, on Father's Day, I am thankful.

If you would like to be on my blog roll...

2011-06-16T17:41:00.001-05:00

Leave me a comment. :)

Make sure you add your blog url.

Summer!

2011-06-14T20:43:00.004-05:00

It's the last week of school. I have to say, I am looking forward to less homework and more time outside.

I am not a play date mom. I forget to call or email, hence nothing is ever scheduled. But God has blessed us with a neighborhood in the city with neighborhood kids. Many go to the same school with Elaina and Zoya. They play in the parking lot and have lots of fun. A blessing for me, a mom who can't seem to schedule.

I look forward to watching the kids make up new worlds in the parking lot with friends.
It's good for them to feel the stretch of a long afternoon, to get past boredom and tap into the vat of imagination they each hold.

We also look forward to a few weeks of camp for Elaina and Zoya. Elaina is going to a theatre day camp a few times a week and Zoya opted for typical camp. And Polly and Evie will do four weeks of summer school. This year it's at their school with the teachers they love. Hurray!

My plans for the summer include finishing the second draft of my memoir, hugging my children more and sitting out on the porch with Sergei at night.

We may take a family vacation in August, but that is still in the works.

What about you? What are your summer plans?

Twit on Twitter

2011-06-10T11:11:00.003-05:00

So, I am attempting to utilize the wonderful world of Twitter. The problem is, I am totally confused, I don't understand the acronyms and I read somewhere that you should have the same amount of people following you that you follow.

Right now I follow 384 people.

174 people follow me.

At least the 4s are the same.

So, help a Twitter twit out.

What must a newbie know about Twitter?

Oh, and if you'd like to follow me, that wouldn't be so bad either.

Conundrum about my memoir KRASATA

2011-06-08T08:08:00.004-05:00

So... I am in the throws of rewrites for my book KRASATA, a Memoir of Motherhood, Down syndrome and Unexpected Beauty.

Writing is going well. I am glad that I got help from an editor before rewrites. Worth every penny!

The conundrum? Well, I am still a few chapters away from finishing and the word count is already over 68,000 words. KRASATA is getting a tad long at this rate and I can't decide if I should include both Evie's adoption and Polly's stroke at the end.

The options?

Include both, and have a looooong memoir, place the adoption where it fits chronologically and end with Polly's surgeries.

or

Cut out Polly's stroke and surgeries. Then the story would start in Ukraine with Polly's birth and end in Ukraine with Evie's adoption?

Opinions, PLEASE! I beg of you. I'm stuck!!

When people say the word retard...

2011-06-03T09:57:00.003-05:00

When people say the word "retard", honestly, I don't always want to speak up.

For example, when a close friend or family member says "retard" or "retarded" I know for sure they aren't using it in a derogatory way. They aren't thinking of Polly or Evie. I know they love my kids. They have simply gotten in the habit of using slang. They probably don't even realize what it means and I know I will embarrass them when I point out their choice of wording.

When people say the word "retard", sometimes I don't want to speak up because I am tired. There are days when I don't want to be an advocate. If I'm out with a group of girlfriends, or at a dinner party, I don't want to stop the conversation and explain to the person who used the word how it is offensive. I don't want to ask her to please stop. I just want to eat my food and enjoy my time.

When people say the word "retard", there are many times I want to let it go. I want to ignore it because I don't want to be classified as a mother to a child with Down syndrome. I just want to be known as a mom: Elaina's mom, Zoya's mom, Polly's mom, and Evie's mom.

When people say the word "retard", or poke fun in some other way at people with disabilities, I don't always want to correct them. If they are going to be stupid and offensive, let them. I don't have a well full of energy these days. I'd rather focus on other things.

BUT...

When people say the word "retard"...

I make myself speak up, even if I am tired, or if I want to just be known as a mom in that circle or if I know that the person doesn't mean what she says.

Because I am a mother to two children with Down syndrome. I am an advocate. And I want to be a good friend and family member. And a lot of times that includes educating people on the use of 'retard' as hate speech.

I speak up because someday Polly will hear that word, and she may know what it means, and it could break her heart.

So if you are around me and you say "retard" and poke fun at people with disabilities... be forewarned that it is my duty to speak up.

Because of my love for my kids.

Garage Sales

2011-05-26T13:06:00.001-05:00

I am gearing up for a garage sale this weekend.

It's so much work to prepare for one of these things, I hope we do well.

Some people love garage sales. Some hate them.

How about you? Love them, hate them? Have you had success? Or tell me about a dud.

dog walking flier print out asap

2011-05-25T21:56:00.004-05:00

I received an email from Zoya this afternoon that ride, simply: dog walking flier print out asap.

Zoya Marchenko

Dog walking!

50 cents per dog.

Go to the park with you and your dog and walks down the street.

Monday-Saturday

1:45 on weekdays and Anytime on Saturday in the summer anytime after 4:00

Thank you.

Granted, Sergei and I have not decided Zoya could start her own dog walking business but at least we have all the facts now.

Busy-ness and trees

2011-05-16T12:51:00.012-05:00

It's a crazy time at our house. Everyone in the family is moving into a new bedroom. The set up will allow Elaina and Zoya each their own rooms (desperately needed... the shared room just wasn't working; Elaina is a light sleeper and Zoya has been getting into trouble with her for horribles things in the middle of the night, like, for instance, ...coughing.) Polly and Evie will still share, but are moving into Elaina and Zoya's old room. Zoya gets the guest room, Elaina gets our old room complete with a big closet (the clincher for her) and Serg and I will move into the largest of the four rooms in order to provide a bigger writing space for me at home.

I cleaned out the basement. We have nine Rubbermaids full of clothes that will be sold (hopefully) at the end of May at a garage sale in Michigan. And I'm slightly obsessed with Craigslist. I've sold the guest bed and the bunk beds and a dresser and bought Elaina's bed, Zoya's loft bed and a dresser, all in a week. My poor husband has acquired a second job as a furniture delivery man. Two rooms are being painted, and I've purchased new bedding. At some point, this all should be finished and we may get back to some semblance of normal around here. Maybe.

We are busy in other ways too. Polly and Evie each have yearly checkups in May and June: Ophthalmology, audiology, spinal scans, neurology, pediatrician general check ups, ENT, what else?, I am probably supposed to be somewhere right now... crap, where did I put the family calendar? I am thinking about schooling for Evie and Polly next year and their upcoming IEPs, forms for the older girls' summer camps (Elaina, theatre camp, Zoya, day camp) and carving out hours to finish the second draft of my book.

I'm not showered, but I did brush my teeth. There are two loads of clean, folded laundry on the dinning room table. Evie is playing with a push toy (big progress!), Zoya is home from school with the flu, Sergei's at the church and Elaina is at a friend's house mommy helping.

To be sure, it's too much. As I write Polly sits beside me, working on her lines and circles. Pre-writing skills are coming slowly. She is poking me gently on the cheek with her pencil. "Mom, write with me?" she asks over and over.

And somehow, I am thinking today about trees. In Ukraine, after Polly's birth, there was a tall, lifeless tree outside my window at the hospital. It was the beginning of April. There were no leaves, no green, hardly any sunshine. A bird sat at the tip of the tree every day, all day, for twenty days, while I waited for my daughter to gain strength and be well enough to go home. The bird became my friend. My world had been picked up and shaken like a snow globe with Polly's diagnosis of Down syndrome. He was still and peaceful. His presence soothed me.

While I've been running up and down the stairs of our two story house, flowers have bloomed outside. The trees are full of luscious, green leaves. Dandelions are growing on the front lawn.

I am drawn to the trees. I position my writing desk to look out the window. The tall limbs help me to breathe. I watch for birds and think and write. I love to look at an oak tree against a bright blue sky.

We are busy. And most days I am stressed, and worried, and unsure of parenting and writing and the new pair of jeans I bought at Target and if I am giving my best to God. But we are in a good spot, a time of peace and joy. A time of sunshine and tree leaves and for that, I am truly thankful.

I have a secret, though, something I didn't know before Polly came along. Something I wouldn't have learned had my life gone exactly as planned.

It's this:

The barren tree has purpose. How else could I appreciate spring blossoms without experiencing seasons of of emptiness? I've grown , my family has grown, and when I see a beautiful green tree I can give thanks. I realize more barren trees are in my future. That's just life. I hope I remember my secret about purpose and growth. The busy-ness of Spring will come back around for us in God's time.

And there is untapped beauty in empty trees.

10 things about us

2011-05-10T18:28:00.002-05:00

Do you ever feel like you have so much to say and so... you say nothing?

That's me right now. I am neglecting Pocket Lint but I can't help it. Every time I try to post, my mind goes blank. So I decided I am just going to give bullet points. Think of this as a Marchenko business presentation:

1) Polly had her Moyamoya annual test and the blood is flowing. I am so thankful for her health!

2) Zoya turned 9 years old on March 29th. She went to a cooking class with a friend and we had a family party at home.

3) Our church had a wonderful Easter celebrating the Risen Jesus. A whole family was baptized, there was a brunch and an Easter egg hunt and a meaningful service.

4) I am half way through rewrites for KRASATA (my memoir about Polly and other things :).

5) I cleaned my house for company. It's dirty again now.

6) Evangeline now follows us around the house and wants to be held :).

7) Mothers Day is hard every year because I cannot believe God has loaned me four beautiful daughters and I fear that I am ruining them. And then they give me kisses and home made cards and I feel better.

8) Sergei is busy but somehow, he makes sure we (as his family) know that we count.

9) I have been up and down with depression... but more up now, and for that, I am thankful.

10) We were able to host and family from Australia and upon meeting, they instantly felt like family.

Polly's first T-ball game

2011-04-30T12:26:00.003-05:00

Hey everyone! I'm back after Lent. Just have to get used to blogging again.

Polly plays on a t-ball league for kids with special needs here in Chicago. Today was her first game! She had fun for the most part. She got tired near the end. And we brought Evie today and she hit with Papa and ran the bases... scared her to death. Poor little thing!

No Internet for Lent

2011-03-08T06:24:00.005-06:00

So, tomorrow is Ash Wednesday, and we start the season of Lent. This year I'm giving up the Internet for Lent, which means no facebook, no blogging, no forums or chats. I will still be checking my email and will probably do an article or two for the Examiner to keep that gig up and running. But otherwise, I am going to try to focus more on things in the real world for the next forty-six days.

Tomorrow is also my self-imposed deadline to finish the first draft of my memoir. If my writing time today goes well, I should be able to say that I am finished. Wow. We'll see...

If you need to reach me, please email me at gillian@rcn.com.

Spread the Word to End the Word!

2011-03-01T21:00:00.005-06:00

Tomorrow is the annual SPREAD THE WORD TO END THE WORD campaign to end the use of retard in the English language. Wanna give me a birthday present? (Yea, it's also March 2nd :) Go to this link and pledge not to say retard. It takes less than a minute. Do it for Polly and Evie. Do it for their Mama who loves them! Thanks!

Literacy, pudding and hope

2011-02-28T15:04:00.005-06:00

"Wow! Polly is really smart!" I beamed as my daughter sat up to the table like a big girl. Using her pointer finger, she slowly mimicked every word her literacy helper read. I thought about when she was born. Oh, how I worried. She'll never talk. She may not even communicate. Will she ever learn to read?

Gigi's Playhouse is a wonderful Down syndrome Awareness Center right near us here in Chicago. They offer play time and networking, and stuff for older kids and siblings, and parents. And they have this great literacy program. When you sign up, you are then matched with a volunteer to work with your child a few times a month. There are booklets for various subjects like family and home, food, the zoo. Through repetition, a kid starts recognizing and matching pictures and soon that turns into recognizing and matching words and sentences.

Polly and I walked to her first session today. She talked the whole way there. I showed her the blue sky. "The moon is yellow at night." She answered. "Yes, you're right!" We got there a few minutes early so we waited for the session before us to wrap up. Polly sang Twinkle Twinkle on stage. "Your turn, mom." She said. I quickly changed the game.

During the session I couldn't help but tear up. Before I knew it, Polly's whole story was leaping from my mouth. "Polly's had such a big couple of years. She had a stroke and suffered temporary paralysis, was diagnosed with Moyamoya syndrome and underwent two brain surgeries." "Wow, she is doing so well. She's a superstar, really," the helper oozed.

And I glowed.

You see, I really wanted a superstar. When we were told Polly had Down syndrome, I grieved the loss of the child I expected. And then I decided she would be high functioning. I would do everything in my power to make her the best. She'd be the next Corky!

Enter Evangeline. I believe God gave Evie to me just like he gave me Polly. She was meant to be mine. Evie is four and a half. She has no words. She used to sign more but has stopped recently. Her eye contact is sporadic. She still really isn't playing with toys properly. It takes a while for her to trust you. Cognitively, she averages around a nine month old.

But she is progressing. She smiles more now and she seems to really like her family. Sometimes, though, I catch my heart aching because I want to see her do more. She'll never talk. She may not even communicate. Will she ever learn to read?

I am quite thick skulled.

After the literacy session, I zipped Polly up into her pink winter coat. She insisted on pushing the umbrella stroller home. We meandered down the street, often times running the flabby ten dollar stroller into buildings and weaving around runners and walkers trying to politely pass.

Polly continued her monologue directed at me. And I found myself thinking sadly about Evie. Will she talk? Will she read? Will she ever be ready to be matched with a literacy volunteer at Gigi's?

I want to communicate with Evie. I want to see her progress cognitively. And I really want to be past the baby stage. I mean, it's been like ten years now.

When we got home, Sergei was just getting in with the rest of the girls from school. Polly had left a half eaten cup of pudding and her spoon on the table before we left. While the rest of us were taking off coats and boots, Evangeline, who is sneaky and quick, made a bee line for that pudding.

By the time I got to her, she was sitting up at the table spooning it into her mouth. She glanced over at me as if to say, "So? What are you looking at?" I was so excited to see her self feeding. She hasn't initiated it once since she's been home.

And you know what? I had that same feeling of accomplishment I had at Gigi's playhouse with Polly. Evie wasn't learning pre-reading skills. But she was learning to feed herself. It was progress. I was thrilled.

When you parent kids with special needs, it's not about the accomplishment. OK, well, sometimes it is. At least for me it's a struggle. But it is more about the effort. Every time I see one of my kids do something new, or progress a bit in an area of development, my hope for them is rekindled. And it feels fantastic.

All my kids are superstars because, simply put, they are mine.

I hope some day I can lick comparing other kids with special needs to mine. I hope some day I can stop wanting Polly and Evie to be equal developmentally. Comparing is such a waste of time.

But, sigh...

I am thick skulled.

Beautiful Evangeline

2011-02-04T16:01:00.001-06:00

More Chicago Snowmaggeddon 2011 pix!

2011-02-02T11:58:00.003-06:00

Snowmaggeddon has started in Chicago!

2011-02-01T15:06:00.001-06:00

We are hunkered down at home. They say Chicago will get over 20 inches of snow in the next 24 hours. Wow. I'm thankful for a warm house and four little girls happily playing library in the playroom.

Hard earned love

2011-01-26T18:22:00.005-06:00

I gave an update on Polly recently. Now I'd like to update on Ms. Evangeline Marchenko.

Good news to report! Evie and I are finally in that gooey love you usually have with a newborn. She's been home eighteen months. I honestly wasn't sure if it was going to come.

I see her smile and I can't help but smile back. Throughout the day we seek each other out. This is a big deal. Before, it seemed like when she sought me I wasn't willing or able and when I sought her she wasn't willing or able. We kept missing each other. And we were frustrated with each other. At times we both felt rejected. Most of the time we both felt lost.

Now she comes to me and puts her arms up for me to take her. Most of the time when she wants me, I can't think of anything better than spending some time loving on my girl. She loves for me to swing her around. She loves for me to sing songs. She takes my hands in hers. She plays with toys. She seeks me out when she gets hurt.

It's been a long time coming. I can't say exactly what we did to cultivate this love. I mean, we did stuff. We've done brushing and holding and joint compressions. We go to attachment therapy. But I'm still not sure when I actually started to love her. I just did. And I thank God that it came.

I love her. I love her little heart shaped face. I love the sparkle in her eye. I lover her strong little Ukrainian gymnast body. I love that her eyebrows meet in the middle creating one long uni-brow.

Evangeline has not progressed much cognitively since she came home in August of 2009. She is just now starting to show an interest in toys. She still, mostly doesn't communicate. And I'm not sure if she ever will. But her emotional growth is substantial. She cries for her sisters. She says 'Mama' and 'Papa.'

I think she is starting to believe she is home. What more could a mother want?

Our love is hard earned.

Adopting isn't magical. It's difficult. A child comes home with you after months of dossier prep and in our case, extensive money and international travel. We know she's home in theory. Only she doesn't know that because she has never known what home is. And secretly, our hearts don't feel like it's the right child. Because all of sudden the reality of the child you dreamt about is here. And she acts differently than you thought she would. She smells different than your other kids. When she falls down she wants her crib instead of you. It hurts. And most of the time, it's painful.

But I just wanted to put down on paper tonight that it is worth it. It is oh, so worth it.

Our love is hard earned. But the reward is that much greater because of it.

I am over the moon for Evangeline. Our family couldn't imagine life without her. We are so glad that God orchestrated her being in our family. We got her!

Hard earned love is the best.

A glimpse of how far Polly has come

2011-01-19T07:56:00.009-06:00

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.

The love of my life...

2011-01-13T16:26:00.001-06:00

Winter pix!

2011-01-06T16:21:00.004-06:00

Random winter pix of the Marchenko girls!
Such a different holiday season compared to last year. Nice and quiet and peaceful.
We are blessed!

update

2011-01-04T20:44:00.004-06:00

Here's a little update on me.

Firstly, I need to write that I am feeling better emotionally. Case in point. Most days I get out of bed and shower. I've been seen cleaning and organizing things in the home. My kids make me laugh.

I am still going to a doctor once a week for my depression. I am taking a new anti-depressant too. A friend of mine said that she was leery of medication for her moods due to possible side effects. I think that everyone in the Marchenko house agrees that there are far more dangerous side effects to the lives of all involved if mama ain't happy 'round here. Seriously, though, I am not someone who always needs to be on meds. But when I need them, I need them. And I thank God for his provision and care through them.

Secondly, I not only made it through the holiday season but I actually experienced quite a bit of peace. I found moments here and there to ponder Jesus, the Christ child. The kids had fun doing their daily advent calendar and activities and our church was able to put on a little nativity play for the first time this year (since we've been there at least). All good things that pointed us more towards God during the holiday season.

Thirdly, writing... well, it's not going so well. It is difficult to write when you are having trouble completing thoughts. But I do feel myself coming out of it. I am finding more of a drive to get words down on the page. I am also becoming keenly aware that my future has to do with writing. I'll let you know how that plays out.

Serg and kids and church and everything else seem to be doing well, too. I'll be sure to update more on them soon.

The winner of Bittersweet...

2011-01-03T11:54:00.002-06:00

is Sarah! I am so excited she won. This is the comment she left last week for the contest:

I have been pregnant six times, lost three to early miscarriage and one to a developmental defect at 22 weeks. The two we have bring so much joy, yet the due dates can't pass without the bite of disappointed dreams. Each time someone comments that we have our girl and our boy and are we done. I am struck again that while we look like the all-American family, I will always look at life with arms longing for those I haven't met. Yes, it is bittersweet that makes life beautiful.

Great thoughts, Sarah. Enjoy Bittersweet, it's coming your way!

Everyone who participated had great thoughts. I simply numbered the comments and had someone in my family randomly pick a number. Fun!

Check out Sarah's blog, A Lettered Legacy, here.

Bummed you didn't win? Buy Bittersweet here.

My radio interview about parenting children with special needs

2010-12-27T19:52:00.004-06:00

Here is my radio interview about parenting children with special needs.

December 16, 2010 Broadcast from Bianca Tyler on Vimeo.

How strange to listen to your own voice. Of course, I spotted tons of mistakes but overall, I am thankful for the opportunity to advocate for my kids.

Thanks to Bianca Tyler and her husband Phillip for having me on their show, Let's Talk.

Bittersweet by Shauna Niequist, review and giveaway

2010-12-22T08:55:00.005-06:00

Shauna Niequist’s book, Bittersweet: Thoughts on Change, Grace and Learning the Hard Way, published by Zondervan, was a great excuse to ignore the kids and other responsibilities for a day or two and sit on my duff and read. Several reviews of Niequist’s 2^nd book (1^st book, Cold Tangerines: Celebrating the Extraordinary Nature of Everyday Life) note that by the end of the book the reader feels like a new friendship with the author has been formed. I could not agree more. The wording; the ease and comfort and lightness even in the midst of difficult subject matter, is Bittersweet’s resounding strength.

I was pleased to see Niequist focus on the duality of life often overlooked in our American Christian sub-culture; the bitter and the sweet.

“Bittersweet is the practice of believing that we really do need both the bitter and the sweet, and that a life of nothing but sweetness rots both your teeth and your soul. Bitter is what makes us strong, what forces us to push through, what helps us earn the lines on our faces and the calluses on our hands. Sweet is nice enough, but bittersweet is beautiful, nuanced, full of depth and complexity.” –Page 11, Bittersweet

Many times Christian books give a quick wink and nod to struggles. “Pray harder! Pray more! Rejoice always! Busy yourself with Christian activities!” While all these things (i.e. praise and prayer and involvement in a local community of believers) are important, they don’t always allow needed space for a person to sit in the mess. God doesn’t promise that if we follow a strict check-list we won’t hurt. Suffering can be wasted because people are trying to get over and through trials quickly.

Shauna is brave. She writes about the underbelly of her life; the bottom falling out of a perfect job, infertility, rejection, struggle with weight, miscarriage. Instead of scurrying around like a hamster trying to feel better in the midst of pain, she slowed down and tried to learn the lessons God had for her. It was refreshing to read about the purpose and importance of struggles.

“The question is not, will my life be easy or will my heart break? But rather, when my heart breaks, will I choose to grow? – Page 233, Bittersweet

There are truthful nuggets like this throughout the book. Once in a while I wanted Shauna to dig a bit deeper and to explore a certain thought or idea more. Overall, though, I enjoyed Bittersweet. It’s the kind of book Christians need. It’s the kind of book I want to read. It’s the type of honesty I want to write.

Need a last minute Christmas gift for a friend? I recommend you check out Bittersweet.

In that vein, Pocket Lint is having its first giveaway! Yay! Want to play and get a chance to win a signed copy of Bittersweet from Shauna?

Here’s what you need to do:

Leave a comment telling me about a bittersweet moment you experienced.
For additional entries, leave a separate comment for any of the following: Subscribe to this blog, join my Facebook page or follow me on Twitter (@gillianmarchenko).

I’ll announce a winner next week!

Merry Christmas!

Shauna Niequist is the author of Cold Tangerines: Celebrating the Extraordinary Nature of Everyday Life. Her second book, Bittersweet: Thoughts on Change, Grace, and Learning the Hard Way, was released last summer. She lives outside Chicago with her husband Aaron and their son Henry. She studied English and French literature at Westmont College in Santa Barbara, and worked at Willow Creek for five years and at Mars Hill in Grand Rapids for three years. Shauna loves to travel, eat, read and host dinner parties.

Thank you Shauna, for the lovely book!

Why this blog is called Pocket Lint

2010-12-15T18:47:00.004-06:00

It just occurred to me that Pocket Lint is a rather obtuse blog name.

Four years ago I started Pocket Lint at Word press. I picked the name partly because Elaina and Zoya referred to Polly mostly as Polly Pocket, which worked because she was so little it seemed she could fit in your pocket. Mostly, though, I picked Pocket Lint because at the time, when I started the blog, I didn't feel I had much to offer. There wasn't much left over from the grief I experienced in having a child with Down syndrome. But I am a writer by nature, and so I wrote about it, both on the blog and in journals at home and it felt like what I had to offer on paper amounted to the lint you could find in the bottom of an empty pocket.

Tonight at dinner, Polly arrived with her hair all done up in bobby pins and bows. She had spent the afternoon playing hair salon with her sisters and came to the table when called, sat up like a big girl and had chicken like the rest of us. She laughed at her sisters and contributed to the conversation.

It hits me once in a while: I was so sad and scared when she was born. I remember reading an email from a fellow parent of a child with an extra chromosome. He said, "hold on, the sun will rise again." At the time I didn't believe him. I thought I had taken a turn in life that would never work itself out. I truly believed I would be living in gray from then on out.

I'm happy to say I was wrong.

It took a long time. I had to fall in love with Polly. And it was a slow coming love, kind of like a crock pot set on low, cooking for that much longer than other meals. But once done, once that love kicked in, let me tell you, it's been like nothing I've tasted before.

I still disagree with that father's email. The sun didn't rise again. The sun actually became Polly.

Now days my pocket overflows. I've thought about changing the name of my blog. I know strategically it's hard for people to locate. But every time I seriously consider a different name I realize I need this blog to be pocket lint. That was my beginning. That is my story. And the magnanimity of the fact that there is so much to fill my pocket now is only felt when I think back to the days when there was only a little lint between my thumb and fore finger.

Pocket Lint it is.

Radio Interview

2010-12-15T07:38:00.001-06:00

I am doing a radio interview on parenting children with special needs this Thursday, December 16th at 7pm central on WSTC 1400 and WNLK 1350 on a program called Let's Talk! with Bianca Tyler out of Fairfield county, Connecticut. Thanks to my friend Becky Mills Daye for the hook up!

Click here for more information about the show.

I will also be talking about international adoption and my memoir.

It's going to be live. I'm a tad scared.

Tummy Time at Mom Sense Magazine

2010-12-09T11:37:00.003-06:00

My article, Tummy Time, published in November in Mom Sense magazine, is also up on their website today. Fun!

I'm still waiting to actually see it in print... It seems my copy got lost in the mail. Figures, my first by-line in print.

IEP article for Northwestern University

2010-12-08T12:08:00.002-06:00

I was recently interviewed by a reporter for an article on the IEP process for Northwestern University and their MEDILL REPORTS, Chicago.

Here it is:

For children with disabilities, preschool comes with detailed plans and goals

by Kelsey Swanekamp

Oh Christmas tree

2010-12-01T20:48:00.008-06:00

The Christmas tree is up.

The kids had fun decorating tonight for our first calendar day of December. The season of Advent. A time of anticipation. Who would have thought? A Savior is born!

We all took turns attempting to place the star on the top of the tree but none of us came close. Then we watched as Sergei straightened the tree topper and all got to work without hooks and bulbs. We laughed, we listened to Amy Grant's Christmas CD. What fun.

There are globs of ornaments here and there on the tree. A homemade snowman and a couple golden bulbs. Red sleds and the girls' class ornaments from last year all clustered together.

Sitting here tonight in the midst of the twinkle my first inclination was to get up and spread out the decorations, to make the tree more cohesive and more to the tastes of Martha Stewart. No, I shouldn't do that. The tree is a master piece the way it is. It's how my girls decorated it. The tree represents the magic of Christmas. The fun of family tradition. The glistening soften of white lights, some how making everyone a bit happier. Snow falls outside and I have to admit, I shed a tear or two of thanks giving. We all are getting over strep throat and colds, but compared to strokes and brain surgeries, we'll take it.

Last year while we decorated the tree, Evie stayed away. The lights and activities spooked her. I tried to get her involved. I picked her up last year but she didn't want me. This year, she followed me around with her arms raised. I took her and she was content just being with her momma and papa and sisters.

I have to admit though. In the midst of the quiet night and the twinkling lights and the satisfaction and thankfulness in knowing all four girls are tucked into bed and asleep, I did get up and move around just a couple ornaments.

What can I say? The tree looks much better now :).

Happy Advent, everyone. Slow down and enjoy the anticipation and the sparkle.

Thanks giving

2010-11-23T08:15:00.002-06:00

Thanksgiving week. In the midst of my burrowing through this tiny bout of depression I've come up against, this morning I experience a reprieve.

God brings to mind the many things for which I am thankful.

Why is it that the more we have the less thankful we are? I, particularly, am guilty of this. How very sad.

Today Polly's healthy. Evie gives us hugs. Elaina asks thoughtful questions about faith. Zoya helps her sisters without prompting. We have a big, warm house, one that can fit an extra person or two if need be. I bought a really good pair of tweezers at Walgreen's. I've never gone a day hungry. I went on a date with my husband. We are in love. We laugh. I have friends. My Christmas shopping is finished. Someone gave us a free turkey. My parents and sister live only two hours away. Proximity to them was something I had given up on in Ukraine. I love our church.

And I've been gifted with faith through God's grace.

2010-11-17T17:20:00.000-06:00

Be The Answer

2010-11-12T14:09:00.002-06:00

In the midst of my current struggles with depression, the fact that it is Adoption Awareness month has kind of fallen through the cracks here at Pocket Lint. My apologies.

One thing I have done in order to honor Adoption Awareness is by sharing a post about feeling like Evangeline's mother from Pocket Lint with Be The Answer, A campaign from the The Joint Council of International Children's Services, raising awareness and funds each day in November by sharing adoption stories on their website.

Check it out. Pray. Donate. Adopt?

My herd

2010-11-08T09:34:00.002-06:00

One of the major way God blesses me is through my herd of a family. Examples follow:

* My husband: Last week Sergei worked his schedule around helping me. While I was struggling, he watched kids and made supper and did dishes. He'd work late at night to make up hours.

* My kids: Elaina and Zoya and Polly and Evie gave lots of cuddles and hugs. Polly likes to pray for me. She puts her little hand on my head and closes her eyes real tight. This morning Elaina and Zoya straightened up the whole upstairs before they left for school just to surprise and encourage me.

* My parents: My mom and dad called several times last week and even called Sergei out of concern. And my mom is coming today to help me get back on my feet after my little bout of sadness.

*My niece Karli: I tend to wear my heart on my sleeve, so its quite obvious when I am not doing well. Karli helped watch kids and did pick ups and drop offs. She even offered to go get me food from a favorite restaurant

I am blessed! (and I seem to be doing better.)

Orphan Sunday

2010-11-07T09:24:00.001-06:00

Good news! You're depressed.

2010-11-04T15:35:00.011-05:00

According to the National Institute of Mental Health, Major Depressive Disorder effects nearly 14.8 million American Adults and is the leading disability in the U.S. for ages 15-44.

I have been feeling off for a few weeks. Finally I went to the doctor on Tuesday morning. OK, full-disclosure, I went to a psychiatrist. I've been to my family physician a few times since Polly's stroke, but I need more help then she could offer.

I struggle with depression. Major Depressive Disorder.

I don't talk about it a lot, partly because it comes and goes. There are plenty of times in my life when I'm doing fine. I function. I'm a riot, actually! People love me :). My biggest times of depression have typically been connected with birthing babies.

Also, I can't stand the commercials about depression. "Depression hurts, Cymbalta can help." And there's a scene with a lady slumped on the couch or a man outside looking off into the distance. Yea, that's how I want you to think of me.

But mostly I don't talk about it, even when I am struggling, because there is a major stigma attached to depression. Especially if you are a Christian. How can a person be sad if she has Jesus in her heart?

Well, I'm a Christian, a former missionary, a pastor's wife, an active member of my church family, a MOPS Coordinator, a Children's Ministry Director and I get depressed. I pray, I read scripture, I seek help. I eat protein. I try to exercise. I've taken medication and I've been to a therapist. And I still get depressed.

The Bible is full of depressed people. Have you read the Psalms lately?

"You're sad? Why? Why can't you get over it? What do you have to be sad about? You have a great husband, awesome kids, enough food, etc..." That's what I feel like people would say to me if they know.

But here's the thing. I don't try to get sad. In fact, I fight to feel OK. Sergei and I know my triggers. If I'm starting to feel low, I get up, go for a walk, take a shower, pray. And sometimes, I still get depressed. My typical mood line, my starting point, if you will, is lower then people who aren't depressed, even if I am well.

One of the things the doctor said to me Tuesday was this. "Gillian, you are sitting here smiling through this session. And the questions you answer score you quite high for Major Depressive Disorder."

"Why are you smiling?"

Well, here's why. I've learned how to pull through. I've learned to smile when I feel like crying. I've learned how to fake emotion (thank you very much Mr. Keech and the rest of the Watervliet Fine Arts Department). Part of it goes with the job. If you a spiritual leader than people want you to be solid. If you are a missionary, you probably can't lie in bed for two weeks. If you are a mom to kids with special needs, you can't ignore important doctor appointments because you don't have the energy to go.

I'm not alone. There are 14.8 million Americans struggling with depression today. And most of them probably feel guilty that they just can't magically feel better like I do. So I decided to come clean. Because today I am sad. Yesterday I was sad. I may be sad tomorrow. And it hurts more and is helping less (both myself and others) to keep quiet about it.

Annie Dillard has this wonderful quote about writing that I think fits in with this post beautifully.

“One of the few things I know about writing is this: spend it all. Shoot it, play it, lose it, all, right away, every time. Do not hoard what seems good for a later place in the book, or for another book; give it, give it all, give it now. The impulse to save something good for a better place later is the signal to spend it now. Something more will arise for later, something better. These things will fill from behind, from beneath, like water. Similarly, the impulse to keep to yourself what you have learned is not only shameful, it is destructive. Anything you do not give freely and abundantly becomes lost to you. You open your safe and find ashes.” The Writing Life, pages 78&79

That's kind of my philosophy for life. I should shoot it, play it, spend it all, right away, every time. I can pretend I'm alright. I can pretend I'm someone else. But I know better. God knows better. 1 Chronicles 28:9 says, "The Lord searches every mind and understands every plan and thought." So what good does it do to pretend I'm OK when I'm not? It just extinguishes whatever little energy I have left trying so hard to hide how I feel.

If I keep this to myself, then I extinguish God's purpose in it. I think he wants to use this for his good.

I truly believe that.

"The impulse to keep to yourself what you have learned is not only shameful, it is destructive. Anything you do not give freely and abundantly becomes lost to you. You open your safe and find ashes."

I am a Christian, a wife, a mother, a writer, a friend, a missionary, a church-goer, and I am also a person who struggles with depression.

I offer this unsavory, unpolished, raw part of myself to you. I have to believe there is purpose in it, something more useful than hoarding ashes.

Creating Space

2010-10-30T18:30:00.006-05:00

Evangeline and I are doing so much better.

Case in point: tonight Sergei is at a party with Elaina and Zoya. Polly and Evie are fed and changed, ready for bed. They are playing and watching Caillou. Evie just stopped what she was doing, came over and climbed up on my lap and gave me a huge hug.

I can't tell you how that makes me feel. Well, that's not entirely true. If you've read Pocket Lint this last year than you know that our bonding has been difficult.

Today someone who just completed an international adoption wrote that she's been home for three weeks and she still feels like she is babysitting someone else's kid.

I know that feeling.

I felt that for quite a while when Evie came home. Adopting her was supposed to happen. In theory I knew it wasn't only a correct response to God to adopt Evangeline because he adopted me, but I also knew that specifically for us, the Marchenko family, this was his will.

That's why it was so hard when I didn't feel much for Evie after she came home.

I know, I was naive. I had no clue what it meant to adopt. I had no idea what it would do to both my heart and Evie's. Both our lives were turned upside down.

About a month ago Evangeline and I started attachment therapy at the Erickson Institute here in Chicago.

Honestly, most Mondays I don't want to go. It's a hassle every week to get there. All we do is sit in a room and play for an hour once we are there.

I pull out all my tricks; Itsy Bitsy Spider, peek a boo, all the things I know Evie likes. I know she'll respond. And the therapist sits next to us with a serious, curious look on her face, watching my every move. I catch myself daydreaming, 'she's probably judging me. She probably is a mother. She probably has a perfect relationship with her kid. And she's one of those ladies who doesn't need to wear make-up to be beautiful. Hmph.'

I tickle, I laugh, I make Evie giggle by hanging her up side down.

I am kind of faking. We never last a whole hour playing at home, not with three other sisters around, homework, housework, writing, and Polly's arms wrapped around both me and Evie, eagerly wanting to join in whatever game I've initiated. And I get tired playing. But what am I going to do? There's a chick sitting there watching us. It's not like I can check facebook on my cell.

But something magical happens when Evie and I go to therapy. We play. The therapist and I talk. We say our goodbye when the hour is done. I hold Evie's hand and guide her out of the office and down the hall. I press the down button on the elevator and Evie looks around wide-eyed. We walk slowly outside to the car. Evie loves the commotion of downtown Chicago. I stare at the reflection on the building. It's just the two of us, together, walking.

Magic doesn't happen in the little room with green walls and brightly colored blocks and baby dolls. The magic is in finding childcare for the other three kids and maneuvering our day so that Evie and I can slip away, walk while holding hands, play a bit without Polly on top of us. I get a little time to focus on Evie.

That's where the magic is: in creating space.

It took both of us a while to create space in our hearts for each other. And I'm not saying that everything is easy and sweet. We both still struggle as we mold together.

But a space has been cleared out in our lives for one another.

And it is being cultivated through the every day, usual things we do. It's cultivated by taking two hours out every Monday to go downtown to play.

We create space.

That's all the magic I need.

I'm a Christmas warrior for a little girl with Down syndrome in Russia

2010-10-30T13:41:00.004-05:00

I'm a Christmas warrior for a little girl with Down syndrome from Russia named Aisha through Reece's Rainbow's Angel Tree Christmas Project.

Date of Birth: January 2009
Gender: Female
Eyes: Brown
Hair: dark brown
Nature: Calm

Aisha is a doll baby! We do not have any further medical info about her at this time, but please inquire with our agency partner.

Aisha's region requires married couple only, small families ( no more than 3 children at home), VERY comfortable financially, and preferred experience with Down syndrome. This is a particularly costly region, so total adoption costs could exceed $40,000. Aisha's adoption and others from this region will open the door for dozens and dozens of other children with Down syndrome just in this one region alone!

This holiday season, my desire is to raise awareness for this beautiful, valuable little girl. I am going to pray about a money goal to raise too.

Details soon...

Grab Our Russian Flag Warrior Button!

Evangeline's birthday party pictures

2010-10-29T08:58:00.008-05:00

Evangeline's fourth birthday was a weighty day for me. Whenever I talk to people about our adoption journey I usually end up telling them about kids being transferred to institutions after they turn four years old. I tell them about children who are transferred who don't survive the first few years. There are kids who have died in institutions because of the lack of love and affection, or because of a common cold that turns deadly without medical care.

Evie was one of those kids determined to be transferred to an institution. But instead, on her fourth birthday, she was surrounded by family who loves her. We had laughter and presents and cupcakes.

Evangeline is still more interested in the wrapping paper and bags.

She wasn't real sure of the cupcake at first.

She loved the dancing part of the evening, though.

The gang: Evie, Zoya, Elaina, Polly, Mike (Karli's friend), and my niece Karli.

Evie's sisters helped her with the presents and cards :).

Polly showed Evie how to properly eat a cupcake.

Party down!

Blow out your candle!
This is improvement.
Last year she screamed bloody murder when she saw the candles.

OK, yea, I like cupcakes.

I'm happy!

Our Ukrainian birthday cake song.
It's a family tradition to sing and do the dance.

Happy Birthday sweet girl. We love you.

Today I read on facebook that a little boy waiting for his family to come get him through Reece's Rainbow was transferred to an institution. They don't know where. Please pray that this sweet family can still adopt him.

Go to Reece's Rainbow for more information about adopting kids with Down syndrome. If you can't adopt, you can pray, or give financially or pick a kid and fundraise for him.

Sergei and Evie

2010-10-28T07:26:00.003-05:00

In Ukraine while adopting her.

In Chicago on her fourth birthday.

Evangeline is four!

2010-10-27T15:22:00.003-05:00

A very Happy Birthday to my little girl, Evangeline Sergeyevna Marchenko.

I have been putting off this post because I wanted to find some time to write something poignant. Well, instead, I've just been hanging with my birthday girl.

She had pudding for lunch and then we took a long walk outside in the stroller (her favorite thing to do). Although her birthday party isn't until tomorrow night, we can't help but celebrate Evie today too :).

Maybe I'll get around to a longer post, but for now, it's enough to say that my daughter is four years old, and I'm thankful to be her mom.

Reece's Rainbow's 2010 Christmas Angel Tree

2010-10-26T10:38:00.004-05:00

A great way to give this year as we had into the holiday season is to pick a little one with Down syndrome from Reece's Rainbow and participate in the angel tree project.

Reece's Rainbow's website explains it all so much better than I could. (The following is taken from Reece's Rainbow)

Our 5th Annual Christmas Angel Tree

Running from November 1-December 31 each year, the Christmas Angel Tree is our most important fundraiser of every year.

During this time, all of our children with Down syndrome from ages 0-5 are openly listed on one page and eligible for grant donations. Each child has a Christmas WARRIOR who has a blog button for their chosen child and provides a focused fundraising effort for that one child throughout the project. Children can have multiple warriors, but we work hard to ensure that each child has at least ONE prior to the launch of the project. As a donor, you can make a larger donation for one child, or smaller donations for many children. Every penny helps!

The goal is to raise $1000 or more for each of our nearly (200) waiting children with Down syndrome. Through the focused efforts of our generous donors and Christmas Warriors, we know we can reach it!

This is also a very personal and meaningful GIFT IDEA, and gift cards will be sent with the ornament to your intended recipient. These are great for friends and family, but also for teachers, therapists, caregivers, doctors, etc. Even if you do not celebrate Christmas, our gift cards make wonderful gifts for Hanukkah, Kwanzaa, or any other seasonal celebration. We also welcome international sponsors through Paypal!

You can choose to make a larger donation for one child, or smaller donations for several children. $5 of your donation for each ornament desired will be shared with our Voice of Hope Fund, to help cover the costs of the ornaments, shipping, and Paypal fees, and to further the work of our ministry in the future.

Reece’s Rainbow is a true non-profit, and relies completely on private donations to this fund to remain operational, so your gifts for that are greatly appreciated throughout the year.

With a nearly 90% prenatal termination rate of our angels with Down syndrome here in the United States, it is our HONOR and OBLIGATION to rescue those who were blessed enough to be born.

On November 1, a new link will appear on this page for our Angel Tree Sponsor Page, where each of the children will be posted and eligible for Christmas grant donations.

If you have any questions or ideas on how you can help, please contact us! When you donate $35 or more for a child, you will receive a beautiful photo ornament (WHEN DONATION MADE BEFORE DECEMBER 15!) of your sponsored child to hang on your tree! This is a very special way to “share Christmas” with an orphaned child, and to make it possible for other families to afford the high cost of rescuing them from orphanages and mental institutions around the world!

I am going to go sign up to be a Christmas Warrior. How about you? Reece's Rainbow connected us to Evangeline... let's help other kids find families!

A guest post about an orphan in China with Down syndrome

2010-10-25T09:08:00.005-05:00

*Please welcome my guest blogger. We'll call her Walking to China. She's working and living and studying in China with her husband, daughter and foster son.

This post is about how she came to foster a child with Down syndrome in China.

There were teenagers in the house that night. My teenage daughter’s classmates were over to watch a movie and eat pizza. It was the middle of August and school had just begun. It was a beautiful, end of summer evening and we were all in a pretty good mood.

The day before I had sent an e-mail to two doctors that I knew who did medical care in our city orphanage. I had met several families that were doing foster care for orphans that needed to be out of the orphanage. All of these children had special needs of some sort- most were severely underweight and underdeveloped. I had seen and held some of these children and admired what their foster parents were doing. I knew that these families needed breaks and so I e-mailed and offered to do some respite care.

I could not have imagined that a call would come the next day from a very tired foster mom. Nothing could have prepared me for the child that had just come out of the orphanage. Nine months old and about 7 pounds. Smaller than my own daughter at birth. He was so weak that he couldn’t suck a bottle- he was being fed every two hours around the clock by eye dropper. His skin was translucent and hanging off of him. His arms and legs were like sticks. His stomach was distended because of starvation. He had no hair. It was excruciating just to look at him.

So we took him home for the weekend. Then we kept him for two more weeks. Then we fell in love and signed a long term foster care agreement. We entered a whole new world of orphan care, Down syndrome, the Chinese medical system and the special needs foster care and adoption world.

The orphan situation in our country is complicated and the issue of orphans with special needs is even more complicated. Why he was so small, so near death is an unanswered question. All I knew was that the mom protective urge rose up in me and I knew that I wanted this child. Charlotte Gray says “Becoming a mother makes you the mother of all children. From now on each wounded, abandoned, frightened child is yours. You live in the suffering mothers of every race and creed and weep with them. You long to comfort all who are desolate. “I knew that our foster son was wounded, abandoned, desolate. I knew that I had to comfort and to protect.

Our foster son has many challenges. Because of having Down syndrome, he has low muscle tone. It is likely that his low muscle tone made him unable to drink bottle quickly in the orphanage. Because of the large number of children in the orphanage, bottles are propped. Children must drink quickly. He clearly couldn’t.

He also has lung damage from inhaling formula. This lung damage leads to colds quickly becoming infections that lead to pneumonia. We have all ready done one stint in the hospital because of low oxygen due to pneumonia. We have to be hyper-vigilant of germs and sick people. We don’t go out as much as we did.

Our foster son cannot sit on his own, crawl or walk. There is no physical or occupational therapy available here. However, we’ve been blessed to have consultations with speech, occupational and physical therapists from the United States. We have amazing doctors. It is hard to know what issues stem from having Down syndrome and what come from being severely malnourished. However, he is on a good developmental track and should be able to sit crawl and walk on his own timetable.

We have had him now for a little over two months. He has gone from being hyper-vigilant and unable to sleep to having a good sleep routine. He is eating solids. He is starting to roll over. He talks to us and listens to us when we talk to him. He loves it when we sing to him. This week he laughed for the first time.

Our dream for him is that he would find a forever family. Our foster son is one of many who need a family. But until that family is found, we are committed to loving him and caring for him as a person of great value and worth. It is a joy and a gift to have him in our lives.

Follow their journey at Walking to China.

Thank you Walking to China for this beautiful post!

Help bring another child with Down syndrome home!

2010-10-24T22:31:00.004-05:00

My friend Leah and her family are stepping out in faith to bring home a little guy with Down syndrome named Axel. Click over to her adoption blog! Here are the details...

Apple® - iPad™ with Wi-Fi - 16GB

How to enter: $25 per entry, and of course you can enter as many times as you like! But, as an added bonus, any donation of $100 will give you FIVE entries!!! All donations are 100% tax deductible to Reece's Rainbow, which is a 501c3 non profit organization.

Give away ends November 7th, and the winner will be announced November 9th. Please help them get Axel home by posting this on your facebook pages and blogs, and help them get Axel home!

Remember $25 per entry, just click below to get to Axel's donation page. Ready????? When you get there, click the "Donate" button.

CLICK HERE TO ENTER!

I'm running out of ideas...

2010-10-23T13:00:00.006-05:00

So here are a few random pictures...

EmmaLee McDonald (12 yrs. old) wrote this story, "Pete the Purple Pumpkin" in honor of her brother Toby, who has Down syndrome. WOW!

2010-10-22T08:19:00.006-05:00

Pete the Purple Pumpkin

By EmmaLee McDonald

(Dedicated to EmmaLee's little pumpkin Toby, who happens to have Down syndrome)

There once was this purple pumpkin named Pete. Unlike any other pumpkin, Pete was purple. Every fall he hoped he would get picked. But every fall he didn’t get picked, he wondered why. He thought, “Sure I might be purple, but you can still carve me and eat my seeds.” The only thing different was his outside. People would look at him and then laugh. Every pumpkin thought that Pete was the kindest, sweetest pumpkin ever! They also wondered why Pete wasn’t getting picked. Now, Pete was getting older and the farmers said that if Pete didn’t get picked this fall, he would have to be thrown away. Pete didn’t want this to happen, so he hoped this fall would be different. Two days went passed and people only looked at him and laughed. Then, the next day, a little girl with a pink tutu and a tiara looked at Pete and said “I want this one.” Pete was so overjoyed. This girl loved Pete the most. Once this girl carved him, she placed him on her porch. That evening, she saw all of the neighbors on her lawn. Hoping they weren’t making fun of Pete, she ran out. Then, she realized what they were all staring at. It was a light brighter than any she had ever seen, shining from within Pete, without even one candle. It was a light that shown from within. Then, people came from far and wide to see this bright, little pumpkin. Just imagine what the world would have missed if Pete were simply thrown away. Even though people may look different on the outside, true beauty comes from within.

Big thanks to EmmaLee for sharing her story with me. Great job!

(EmmaLee is twelve years old. Amazing, huh?)

Leave EmmaLee a comment telling her how much you love Pete the Purple Pumpkin :).

Some of my favorite books about Down syndrome

2010-10-21T15:13:00.006-05:00

The Memory Keeper's Daughter by Kim Edwards. Great fiction! Click on the book picture to get to Amazon to buy a copy :).

Jewel by Bret Lott. I read this book in Ukraine when I was pregnant with Polly. I didn't know she had Down syndrome. The book is fiction, about a woman in the backwoods of Mississippi. Her last child was born with Down syndrome. It is a wonderful read.

A friend in the Down syndrome community :). Jennifer Graf Groenberg wrote a beautiful book called Roadmap to Holland. Check it out!

Expecting Adam by Martha Beck. Another true story. Phenomenal writing.

What are your favorite reads about Down syndrome?

The Cornish family and their amazing adoption story

2010-10-20T10:31:00.006-05:00

My friend Meredith and her husband Michael have put together a video chronicling their adoption process. This family puts their yes on the table for God. They take seriously the Biblical mandate to care of widows and orphans.

I met Meredith through on-line Down syndrome support sites and later she was instrumental in her work with Reece's Rainbow in helping us bring Evangeline home.

Check out this video. Pray for these guys. Give towards their financial needs if you can.

Also, 'Wesley' in their video is a little guy from Evie's groupa in her baby house. When we were there last summer we were able to get information and pictures of three kids with special needs to Reece's Rainbow.

The other two children are already adopted and home with loving families. It's Wesley's turn next. Makes me want to cry.
What a story.

Make video montages at www.OneTrueMedia.com

I feel...

2010-10-20T10:16:00.001-05:00

Thanks for the guesses!

I feel like God is doing something. I feel like it's his work and I'm along for the ride.