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

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.

update

Here's a little update on me.

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

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

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

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

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

Good news! You're depressed.

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

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

I struggle with depression. Major Depressive Disorder.

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

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

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

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

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

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

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

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

"Why are you smiling?"

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

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

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

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

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

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

I truly believe that.

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

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

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

It's got to be funky

My blog is like my life. I tend to get overwhelmed and retreat.

When Sergei and I were first married he gently explained to me that the behavior of hiding away in life when I feel hurt or depressed is not necessarily healthy. I've struggled with depression for as long as I remember. But its not until I had kids and was diagnosed with postpartum depression did I realize there was a name for it. I just thought I was defective. Other people were usually happy. I usually was not.

My baseline attitude generally starts out less like Tigger and more like Eeyore.

With help through the years, sometimes counseling and medication, sometimes eating right and exercising, always prayer and reading the Bible, I've managed. Now, on most days I'm well. Actually, I've come to see my struggles as a blessing. I am forced to trust God. I am lured to think deeply.

Lately writing has been the source of my exhaustion and drudgery. As I work on my memoir, KRASATA, I'm reliving everything that happened four and a half years ago when Polly was born in Ukraine with Down syndrome. Not only that, but God is taking me back through my life. I am walking the streets of the small town I grew up in in. I am remembering the way my mom smelled when she came home from work late at night when I was little. I remember how I felt seeing a person for the first time with a disability.

My life story is being reworked. It's weaving into a new picture. And I am a spectator waiting to see if it's pretty when it's finished.

My work causes introspection and less vigor to blog and more of a desire to get this story down on paper. I am thoroughly enjoying myself to be sure. But it's exhausting too.

Please be patient Pocket Lint readers. If, indeed, any of you are left :).

For now, I think I'll hang out in this funk.

My life - it's got to be funky.

Mom, I'm fine

My mom called a couple days ago, very concerned. She read my post about vacation.

"Are you OK?" she asked, blowing out air with her words, making her voice all breathy and serious.

I am unequivocally becoming my mother as I age, a fact rendered every time I bend over to pick up a kid's toy. We bend over like jack knives, absolutely no movement in the knees, it's like a high dive into the carpet.

We share other characteristics too; cushiony middles (but Zo says we make the best pillows), small noses, a thin line for a top lip, the ability to talk to just about anyone anywhere and intense mood swings (my teen years were, um... fun.)

Mostly, I'm fine with becoming my mom. I like her. Well, I guess the days I try to burrow under my bed in an effort to ignore the world is not exactly fantastic.

So while appreciating my tongue in cheek verbiage about our vacation last week in my post, she also knows when I'm reaching a low point.

It's true, last week was a low point.

I am actually an introvert, so a full week living with 150 of my closest family members can tucker me out.

But I rested and prayed and watched a whole season of Everwood on Netflix.

And this week I'm better.

Honest, mom. Don't worry.