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

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 :).

Wordless Wednesday, What are you looking at? LINKY*

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

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

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

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

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

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

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

"I have two little girls with Down syndrome."

"Your paint is dripping," the mother said.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Literacy, pudding and hope

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

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

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

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

And I glowed.

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

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

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

I am quite thick skulled.

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

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

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

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

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

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

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

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

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

But, sigh...

I am thick skulled.

Tummy Time at Mom Sense Magazine

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

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

Creating Space

Evangeline and I are doing so much better.

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

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

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

I know that feeling.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We create space.

That's all the magic I need.

Evangeline's birthday party pictures

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

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

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

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

She loved the dancing part of the evening, though.

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

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

Polly showed Evie how to properly eat a cupcake.

Party down!

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

OK, yea, I like cupcakes.

I'm happy!

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

Happy Birthday sweet girl. We love you.

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

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

A guest post about an orphan in China with Down syndrome

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

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


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

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

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

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

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

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

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

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

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

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

Follow their journey at Walking to China.

Thank you Walking to China for this beautiful post!