The Wrong Diagnosis
Several months ago, 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.
And, then I realized something.
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.
This past fall, 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.
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.
Adoption is beautiful, but it is also very hard.
With God’s help, we all can be the right parents for our children.
Gillian Marchenko is a writer, speaker, and advocate for individuals with special needs. Her writing has appeared in Mom Sense Magazine, EFCA Today, The Four Cornered Universe, and Chicago Parent. Gillian lives in Chicago with her husband Sergei and their daughters Elaina, Zoya, Polly, and Evangeline. Connect with Gillian on Facebook or Twitter, check out her website at GillianMarchenko.com, or follow her family blog Pocket Lint.