Moving to www.gillianmarchenko.com. Join me!

After careful consideration, I have decided that in the interest of sanity, design, and simplicity, I will no longer post on Pocket Lint.

Instead, I will post at least once a week at www.gillianmarchenko.com. I hope that all my friends from Pocket Lint will join me over there. Please? I have so enjoyed our interactions here and look forward to continuing relationships in my new digs.

The importance of a voice

These last two weeks, I actually sensed God's desire for me to open up more about my personal life. I've written about my struggle in telling the whole truth in the memoir I recently finished writing, and about the severity of my experience with post-adoption depression after we brought our daughter Evangeline home from Ukraine. 

A little bit of electricity zapped my fingertips as I hit the publish tab on both posts. What would people think if I put myself out there? I should just keep these things to myself.

This year, in addition to therapy and after school activities and church and writing and querying agents for my book, I've also had the privilege to speak to a handful of MOPS groups in the Chicago land area. I talk about the birth of my daughter in the former Soviet Union and her diagnosis of Down syndrome and about the grief that ensued for almost a year over the loss of the child I expected. I have other presentations about how to teach our kids to be good friends to those around us with special needs, and about loss and grief in motherhood. 

Every time I have a presentation, there is a part of me that is afraid of judgement. Maybe I shouldn't share all of me. Maybe I should just share the good Christian/ pastor's wife/ missionary parts of me and tuck away the other parts: the mom who didn't want her child. The mom who went to a bottle of Chardonnay instead of to the Lord. The mom who adopted another child with Down syndrome; a quasi stab at redemption, only to find that she, of course, was still the one who needed redeeming.

But each time, and I'm serious when I say this, I can almost hear God's voice saying, "share all of you, Gillian. Because in the hard parts, in the times you made bad choices, in your brokenness and lack of faith, I was there. And that's MY story in you."

Before I speak, I usually run to the bathroom and grab a wad of toilet paper to sop up the sweat underneath my arms. I smooth my hair, and look at myself in the mirror. 

I think of God's voice telling me not to waste the life he's given me. I think of one mom who may be struggling. If my voice encourages her to speak up to someone about her struggles, than sharing the ugly parts of me is more than worth it.

And I think of Polly's voice, chattering in my ear non-stop throughout the day. I think about her reciting the Star Spangled Banner with her class in the morning at school. I think about when she tells me that she loves me, and how it fills me up to the brim of my existence with thanks and praise that I get to be her mom.

I think about Evangeline. Oh, how I long to hear her voice. I anticipate it. I wait for it. And until then I stand up for her as her voice.

So, I step out in front of strangers and tell them my story, and I keep querying agnets for my book, and I keep writing down my rambling thoughts here. 

I include the embarrassing parts for sure. But I also include the best parts, how Polly and I are crazy in love now. How thankful I am to be Evangeline's mom. How awed I am that God knew I needed to be broken in such specific ways in order to be used for his purposes and for his glory alone.

Last night, I got an email from someone who attended one of my talks in September thanking me for my willingness to be vulnerable and for sharing my dark moments, thoughts and actions in my presentation. She is a mother to a child with special needs. Here's a little bit of what she wrote:

 

What you said made me feel “normal”, connected and accepted.  (I’m tearing up as I write this to you, even now, because it meant so much to me and I understand how difficult it is to be honest like that with others…even if they are “strangers”.)

That's really the point of why I do what I do. 

I have a voice, and I am learning not to be afraid to use it.

What about you? How are you using your voice?

The wrong diagnosis, one mother's struggle with post-adoption depression

 One of the first times I was with my daughter in Ukraine in 2009

Second opinion

Last Thursday I took Evangeline, our adopted daughter from Ukraine, five years old, diagnosed with Down syndrome, to a developmental pediatrician.

"I heard this doctor is good at what he does, and I want his opinion about Evie's lack of development since she's been home from Ukraine," I affirmed rather loudly to my husband Sergei in an effort to hide that really, I was taking Evangeline to this doctor for a second opinion.

A year ago, Evie was evaluated at the Erikson Institute here in Chicago for Autism. At the time, her main activities included rocking back and forth, sitting on her bed, and looking at a light-up toy. Her eye contact was sporadic at best and she could not tolerate textured food nor touch (unless it was rough housing). I was certain we would come home with a dual diagnosis of ASD (autism spectrum disorder) and Down syndrome because almost every time I reached out to my beautiful blond little girl, my hand would get slapped.

After several appointments, Erikson concluded that Evangeline was not on the spectrum, but probably suffered from the debilitating effects of orphanage life paired with cognitive and developmental delays that can accompany Down syndrome.

But I wanted an answer

When the report came in the mail, I opened the letter while sitting on the toilet seat behind a locked bathroom door and cried. On some level, I wanted the dual diagnosis because I wanted answers. I wanted to know why Evie ground her teeth constantly, why she sought out dust and dirt to eat but refused real food. I wanted to know why she scratched her sisters when they tried to hug her, and cried at loud noises, and sat off to the side of our lives alone, most days, rocking.

But I did not get a concrete answer. I got a "keep doing what you are doing. Find more therapy opportunities, give her time to bond with your family." And slowly over the next few weeks, I started to shut down. I found it too painful to try to connect with my daughter. For months, I went through the everyday motions of caring for my family as best I could, all the while holding back from climbing into bed. I no longer attempted to bond with Evie. If she was fine being a part of our family without really being close to me, than maybe, I could live like that too.

Wrong person diagnosed

I was seeking out the wrong diagnosis for the wrong family member. Sure, it was good to have Evie evaluated a year ago. She certainly had characteristics that could point to ASD. But really, I was the one who needed the most help. I was struggling from post-adoption depression, which could have only been aggravated by a little post-traumatic stress disorder thrown in after Polly's stroke, diagnosis of Moyamoya, and two brain surgeries. After our time at the Erikson Institute, I quietly unravelled.

I have struggled with depression all my life, but alas, it is kind of like that pesky monthly period for women. Every month I am shocked that my foul mood results with menstruation. And I am 36 years old!

Depression is like that for me, too. It sneaks up on me: a few aches and pains, feeling a little down in the dumps, sleeping poorly. I fight, I do what I absolutely need to for the family and then when I can't anymore, I get into bed and I don't get out.

I started to see a doctor and a therapist, but I wasn't feeling better. I cried out to God to help me, to show me how to trust him and get back on track, but to no avail. I struggled for months, but still, somehow managed to post perky facebook stati often enough so that people outside my direct family wouldn't suspect a thing.

But I was drowning.

About three months ago, God gave me the strength to try again to get help for my depression. I went back to my doctor and let her put me on a higher dosed anti-depressant. I started seeing a different therapist and we clicked right away. I started to wake up in the morning and notice that the sun was shining.

And I saw Evangeline, a little girl considerably changed from a year ago.

Since Evie has been with us (over two years) there have been little breakthroughs here and there in our bonding. I liken them to nicking the surface of a frozen lake with a BB gun.

Now that I am above water again in life, the ice is starting to thaw. I can sit a stare at Evie for a while, marvel at her button nose, appreciate her smell, want to pull her to me.

Why the second opinion?

So, why did I take Evie for the second opinion last week?

Because I wanted to make sure that a dual diagnosis isn't in the picture for our girl. A lot of her behaviors have fallen away but she has a lot left. And although we are doing much better, I am now struggling with the guilt of that missed time when a shadow of a mother was parenting my daughter.

At the appointment, Evie climbed up into a chair, uninterested in the train set the doctor attempted to entice her with. But she laughed when he tickled her, and followed his finger as he played with her, and looked both the doctor and me in the eye almost the whole time.

I loved the doctor. He was a bit brash and un-orthodox (took a text from his wife during our interview and laughed out loud at what she wrote :). But he cut to the chase with me and it was just what I needed.

"I don't see any definite red flags regarding a dual diagnosis off the bat, of course, if you'd like, we can do a full evaluation of Evangeline to get more in-depth. But I have to ask, why are you here? You've already had your daughter evaluated at Erikson?"

"Because, well", I took a deep breath. "Because I am afraid I am not doing enough. Our other daughter got sick and ended up needing two brain surgeries six weeks after Evangeline came home from Ukraine and I. . . well, I've struggled with depression." I kind of left my answer there but in my heart I added, I am afraid that I have already failed her.

"Mrs. Marchenko, your family has been through a very difficult time these last few years. I want you to know, you are doing a good job with your kids."

I had to look away as the tears pooled in my eyes.

"And now, Ms. Evangeline," the doctor turned to Evie and let me attempt to compose myself.

After the visit to the doctor, I realized I had been looking for two things: 1) the wrong diagnosis, and 2) validation that I am the right mom for my child.

I share all of this with you because I am notorious for putting it all out there. It doesn't occur to me to keep things to myself. My husband takes issue with my need to tell people how much I spent on the sales rack at Target.

But more importantly, I share this because adoption is beautiful, but it is also very hard. I share this because  other parents and caregivers are struggling today. Post-adoption depression is real. I want you to know you are not alone. At some point, your feelings may be out of your control. Get help. There is no shame in taking care of yourself in order to care for your family.

One last thing: With God's help, we all can be the right parents for our children.

Post-adoption depression resources:
Adoptive Families
Baby Center
Adoption Issues

Jen Hatmaker, After the Airport

Why it is hard to tell the truth in my memoir

 (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 when I 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 of redemption 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 needed to reach depths of joy and wonder otherwise unknown in my life.

So I will keep putting myself out there. If my memoir publishes one day, not everyone will like it. There will be 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.

A blanket of snow

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!)

Leading the way

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.

Evangleline's OK, thanks for the prayers!

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

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.

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

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

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!

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 was alone, holding my baby’s heel in the former Soviet Union. My book entitled KRASATA (beauty in Russian), A Memoir of Motherhood, Down syndrome and Unexpected Beauty, starts with a mother whose faith nearly bottoms out by the birth of her daughter with special needs. With humor, poignancy, and honesty, spanning two continents, the story ends with the unexpected beauty of an unwanted child who points out the benefit of brokenness and helps position her 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...

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.

Great email from aid about Polly's first week!

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

(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!

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

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!

Friday Feature: A Village of Comfort, by Morgan Gaking

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.

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

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.

Friday Feature: A word picture of acceptance, by Marlene

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.

Polly Pizazz!