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

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.

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!

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

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.

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

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.

"Balancing Expectations" in EFCA TODAY

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?

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

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...

Busy-ness and trees

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.

My radio interview about parenting children with special needs

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.

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

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 :).

For parents who aren't ready to celebrate Down syndrome

I read a blog yesterday from a mother of a child with Down syndrome. She loves her daughter but she's not ready to celebrate Down syndrome.

I would like to validate this mom. If Down syndrome awareness month is difficult for you because you are not ready to fully embrace the world of special needs; it's okay.

It's okay.

Your journey is simply that: yours. And it is valid.

Every person is different. Some parents get over the shock of a diagnosis in two days and sign up to run a Buddy walk at the end of the month. Others (like me) take a lot longer to process what a child with a disability means to the family.

My first year with Polly was slow going. It was painful.

I was jealous of other mothers who accepted Down syndrome as a small part of their children and moved on. They handled everything so much better than I did. Guilt added to my feelings of failing. It made it difficult to reach out for support. Guilt held me back from allowing myself to grieve. It actually prolonged the process.

Emotions like jealousy and guilt waste energy that would be better spent getting to know your child. They suck up time that could be used seeking out love and support. It's energy you need to take care of yourself.

If you are grieving the loss of the child you expected: It's Okay. Grieve.

If you don't want to go to a Buddy Walk this year. It's Okay. Don't go.

If reading upbeat blogs about families thriving in the world of Down syndrome makes you feel inferior. It's Okay. Don't read them.

Give yourself grace.

If you are forcing yourself to do things your heart is not ready to do, that's not awareness, that is peer pressure.

The only thing to do is love your child.

Even if you don't ever get to the point of running a Buddy walk.

It's Okay.

A am now officially a Chicago Special Needs Parent Examiner!

I have a new gig to add to everything else going on in my life. I am a Chicago Special Needs Parent Examiner for examiner.com. I will write 1-3 short articles a week (God willing and the creek don't rise :), journalistic pieces about special needs.

This is a great opportunity to get my writing name out there a bit more and make a little revenue. If you would be so kind to go to my page and subscribe. You'll receive my articles in your in box and I'll make more $$. Thanks so much!

Read my first article and subscribe here.

Also, if you are interested in becoming an examiner (there is literally every topic under the sun and it's in every city) email me at gillian@rcn.com and I'll give you the details. If you sign-up through me, I get a reward!

I could also use ideas. If you think of a good article topic, leave me a comment or email it to me.

Thanks, you guys are the best!

EKS Day Acts of Unity

“Eunice Kennedy Shriver Day” (EKS Day) will promote a global call for people to commit acts of inclusion, acceptance and unity for individuals with intellectual disabilities (EKS ACTS). I have been asked to help spread the word about this fantastic day by tagging 5 friends. I am happy to help.

“I pledge to spread her message of hope, inclusion, and acceptance through my blog, facebook, and twitter on EKS Day, and I tag my 5 friends Brigitte, Renee, Amy, Meredith and Ellen and challenge you to re-post this on your blog and tell us what you pledge to do on EKS Day.”

Anyone can participate with an Act of Unity. You don't need to attend or host a big event. Your Act of Unity can be as simple as:

• emailing, texting, and using your social media outlets to spread the word about the day.
• Change your profile picture to a photo of Eunice (many images in that link to chose from), and
• use one of her iconic quotes as your status update. Click HERE to hear audio files of Eunice speaking.
• On twitter post: RT: I pledge to honor @SpecialOlympics by performing an Act of Unity on http://act.ly/2e7 RT to sign.
• Be sure to post your Act of Unity HERE.

"Every person, regardless of whatever different abilities they may have, can contribute, can be a source of joy, can beam with pride and love."- Eunice Kennedy Shriver

Her Mother?

Last year, in a Ukrainian court room, a stern looking judge had Sergei and I rise. "Mrs. Marchenko, do you think you can be a good mother to this child?"

All I had to do was say yes. 'Da,' in Russian.

Instead, I burst into tears.

The judge's face softened. "Sit down, woman. The answer is in your tears."

I slowly sat down and tried to hush my sobs in an attempt to catch a few understandable words in Ukrainian. The court room business continued and a little girl abandoned at birth by her parents because of her diagnosis of Down syndrome officially became Evangeline Sergeyevna Marchenko.

Today, I sat in a observation room at The Erickson Institute, holding Evie after playing with her while a woman watched us. She took notes.

We've started evaluations at Erickson for Evie to see if they can help us determine if she is on the Autism spectrum or if what she does, stuff like eating dirt and rocking, is left over from being orphaned in Ukraine.

The thing is, after her tonsils came out and her ear tubes were put in two weeks ago, we've seen drastic changes in our daughter. She seeks me out throughout the day now. When I pick her up she smiles. She wraps her chunky little arms around my neck and squeezes.

I love it, don't get me wrong. But it scares the hell out of me too. Because I'm afraid I'll wake up tomorrow and she'll be back in her own world again.

Today in the evaluation she waved 'hi.' And then she said "hi." She interacted with toys. Simply put, she was on. Sergei and I looked at one another in amazement.

If these skills would have emerged a few weeks ago, I would not have made the appointment to have her evaluated.

I kept talking to the social worker about how Evie was, even a month ago, compared to today. She asked me to give her five adjectives that describe my relationship with Evangeline now and how I would describe what it was like in the beginning with her.

It took me a while to answer. I struggled to get words out. I muddled around. Finally I give her the allotted ten words she expected. I have no clue what I said tonight because it was so emotional. The words were so different.

"So, do you feel like her mother now?" The woman with the clipboard asked, blinking, her face a dead pan.

And I started to cry, again. Just like I did a year ago in that Ukrainian court room.

"Yes. I am her mother. I feel it."

I cried not because I was sitting in an observation room having my daughter evaluated for a dual diagnosis. I cried not because at three and a half Evangeline is still non-verbal or because she only eats pureed baby food.

I cried because she has come so far. I saw that plainly today.

I cried because today I realized that I'm the one who has farther to go.

There but for the grace of God go I.

Spring cleaning in June

Thank you for all the kind, identifying comments you left on my last post. Writing about my challenges with Evangeline was more than cathartic. It kind of drop kicked me back into my advocacy hat. I've contacted The Erickson Institute here in Chicago and have an appointment with a developmental pediatrician there to talk about Evangeline. After that intake we will probably start a process of evaluations to see if there is another diagnosis in Evangeline's future (possibly autism) and to see how we can help her more in general. I'm excited. Well, that's an understatement. Every time I think about people helping our family, like about going to Erickson, I tear up.

I'm still knee deep in summer and winter clothes exchanges and have become slightly addicted to selling things on Craigslist. A lot of things have also gone to Good Will. And I am even thinking about cleaning out the refrigerator. This is serious business.

Sergei's mom comes next week for a month visit from Ukraine.

And next week is the last week of school.

Also, we have a new therapy helper, a special education college major coming for four hours a week to work with Evie and Polly over the summer. I realized there is a need for reinforcements around here in the therapy department.

Sibshops

Today I attended a workshop called 'Sibshops' conducted by Don Meyer, a hilarious communicator dedicated to a people group that is largely overlooked; siblings of kids and adults with special needs.

I sat in a room of close to 100 people and thought about Elaina and Zoya. I listened to adult siblings talk about the challenges and triumphs of having brothers and sisters with special needs. One sister cried, saying this was the first time she has connected with other siblings in her position. She is 28 years old.

It felt good to think about my two older girls, to write down tips that can help them in their unique roles.

Polly and Evie get a lot of attention by default. But Elaina and Zoya have needs too.

I found a sibshop that meets near us in Chicago today at the workshop. Elaina and Zoya will be able to go to a group once a month, play games, have fun and connect with other kids who have siblings with Down syndrome and Autism and Cerebral Palsy etc...

After our tumultuous year: bringing Evangeline home through international adoption from Ukraine and Polly's stroke and diagnosis of Moyamoya and subsequent brain surgeries I'm the first to tell you that there were many days that Elaina and Zoya were not on my radar screen. And as a mom that makes me feel like dirt.

I'm thankful that life has slowed down enough and God has pointed out to me the needs of my two older girls. They need attention, affirmation, security, experience.

This weekend Polly and Evie went to spend the night with my mom and dad in Michigan. Sergei and I took Elaina and Zoya out to eat and tonight we went to a show Elaina was performing in at school sans toddlers. Tomorrow the girls get to participate in their very own sibshop.

What a gift to focus on these dear girls for a few days.

It's filling my soul as much as it's filling theirs. It's imperative to remember there were four lives forever changed with the birth of Polly and the addition of Evie. The experience can make us rich or poor.

I hope I can help it to be rich for our family.

Mother's Day Montage

Make photo slide shows at www.OneTrueMedia.com

My left arm aches when it rains

It's supposed to rain later today and my left arm is aching. I broke it in two places, two different times in my childhood and now sometimes when the weather changes it aches, either up near my shoulder or in my wrist; the places it broke.

The ache reminds me of those times; the agony and pain, the fear of being in an emergency room as a child, spending the night for the first time in a hospital, getting attention from classmates and extended family, people signing my cast, 'Get well soon!'. Me trying to itch the inside of my cast with a hanger, not being able to swim for half of a summer because I couldn't get my arm wet. Being a bit doped up on the medication to ease the hurt.

At first my broken arm was my whole world. How could it not have been when the pain was so great, so instant, so overwhelming. At the time there was no way of knowing that wasn't going to be my new normal. As a child for all I knew I could have been like that for the rest of my life.

I went to the hospital, got help, the excruciating pain eventually turned into a dull ache and then only, a flimsy itch.

Life went back to normal and I was found splashing around in the kiddie pool within eight weeks.

But the dull ache comes back every now and then.

And I am reminded at one time I was broken.

This week I went to four parent-teacher conferences for my kids in two different schools. I was prepared to discuss each kid, I thought. But when I sat down with Polly's teacher I was surprised to read on the report that she hasn't met her goals for this year; after a whole year at school Polly still can't figure out the centers procedure, how you have to take your card with your name on it and put it into that center's envelope, that if there are already three kids in that center you have to go somewhere else.

Basically the teacher said that although she's cute and everyone loves her, Polly still just walks around making messes in the classroom.

And the dull ache; the fact that I have not one but two children with Down syndrome started up again.

Polly's birth shattered me. I teamed up with Jesus and Serg to put myself back together but much like that pesky jigsaw puzzle you've almost completed, a few pieces were lost in the mix, and now I walk around with empty spaces.

Most of the time the space is used for good. I have more compassion for others. I understand grace better. I relate to others through my brokenness. And sometimes it feels really good.

But I want to say that there are other times when it breaks my heart my girls are so far behind their peers. I want my kids to be rock stars in the Down syndrome community, but alas, they are only Marchenkos.

I am OK with Down syndrome. OK enough to add Evangeline to our family, to seek out others in the special needs community, to go to my kids' classes to talk about inclusion and acceptance of others who are differently-abled.

But there will always be days in my life where the rain will come.

And because I've been broken I'm going to ache.

It doesn't mean I love my kids any less or that I wish my life was different.

It just aches.

And that's OK, I think.

Snow storms and grace

Today we spent a lazy Saturday at home.

I read, Sergei made pancakes, we all slept in until nearly eight o'clock. The girls played upstairs. There was a lot of commotion in their play. They made a book store and then later, an orphanage. I took stock, realizing that my children have been changed by God's stirring in our hearts to adopt Evangeline.

At some point Elaina and Zoya took a bubble bath by candlelight in their bathing suits. Oh yea, we're fancy.

In the midst of it all Polly's glasses were lost, which is almost comical if they weren't so expensive; my attempt at making her look less like she has special needs (incidentally, we are finding more and more that she does not, indeed, have special needs) and we had just gotten them replaced under warranty.

Polly and I took a nap for an hour in the afternoon. I fell asleep feeling privileged to be her mother, marveling at all the lessons this little soul has taught me. Her birthday is in a couple weeks. I cannot fathom how far we've come in four years. Her birth is a painful memory. And yet, daily, she holds out her hands to us and offers joy. It's like texting with Jesus.

I went to Nohea Cafe on Roscoe for an hour to write and got so excited that it's a cafe run by Christians. I have this bad habit of deciding people are going to be my best friends without giving them the chance to get to know me.

Sergei fed all four girls dinner in my absence. I am blessed to have him as my husband. Seriously.

My brother's birthday is today. I've been thinking about him and a time in my childhood when he watched me after school. It was when my family lived in a small town in Michigan; it seemed like half of the town was family, but looking back, now I know that everyone was family. Justin would make us a frozen pizza and he'd split it down the middle and we'd each eat half (back when I could eat half of a frozen pizza without consequence). We'd watch The Munsters and he'd try to coax me into playing with a friend so he could meet up with his high school cronies. My brother is funny and kind. He makes people feel at ease and I've always looked up to him. Intuitively, I know he is a good father. When I was little he would use me as weights; I'd be his dumbbell and he'd lift me up over my head ten times. When I'm around him, still till this day, I feel safe.

It snowed today in Chicago, after a week of temperatures upwards of 50 degrees. Waking up this morning, the snow blanketing our neighborhood was a disappointment. Before I knew it, our little family of six hunkered down for our last winter hurrah. I revelled in being inside for one more day, watching my children imagine a new world in the playroom. Our cocoon was happy, safe, healthy. For today, at least.

Don't be mistaken, I'm ready for spring. The flip flops are staying out. But today, surprisingly, was sweet.

Tonight after dinner I did my in-home walking video. I walked 3 miles with Leslie Sansone, feeling middle-aged. Evie loves the walking videos. She dances and jives; it's worth it to see her get so excited about the beat. There's a point in the video where we do kick backs, with our arms raised, "Hallelujah." After the birth of Polly, my brother advised me to buy a double cheeseburger from McDonald's without fries, if I really wanted to lose weight.

Elaina watched me well into mile two. "You've been exercising a lot more recently", she noted.

"I just want to be healthy," I lied. I don't want to tell my nine year old daughter who is probably smarter than I am that I desperately still, four years later, would like to lose my baby weight. And I only eat a double cheeseburger with fries like twice a year.

I feel like our family has really gotten a day off today... I don't know if Sergei would agree as he manned the children more than I did.

But it felt nice.

And at the end of the day, after the walking video and Zoya's turn at Bible story time (another gripping account of Jonah and the whale); after three out of four children were tucked into bed, I rocked Evangeline to sleep, totally enthralled with her. We've really started to connect lately.

"I hope it lasts forever," I say to myself as I sip a glass of Chardonnay.

And I am excited about church tomorrow morning; honored that God gave me the grace to believe His gospel and that each week, while sitting at Christian Fellowship Church, a place where immortals merge and focus their attention on the Almighty for two hours, I am fed and stupefied. Where does my husband come up with this stuff? Why does God love me?

And the answer comes: Grace.

Tomorrow is World Down Syndrome Awareness Day. Elaina and Zoya both have plans to do presentations for their class on Monday to honor their sisters. To them, there is no difference; adopted or not. To them, their sisters are not disabled; they are simply Polly and Evie.

I, myself, am almost brought to tears to think about the level of awareness God has brought to our Marchenko lives.

I give Jesus all the glory, realizing that some people who read this will think I am absolutely mad.

All I can say is I'm thankful, that my belief is outside of myself, something that was handed to me by grace. I'm a fish who grabbed the bait.