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.
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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.
Oh, Gillian….what a beautiful post. I love your transparency here. God bless you. GOD. HAS. INDEED. BLESSED. YOU! And I know, dear sister, He will continue. Keep moving forward, see the sunshine, dust yourself off when your down and let Him lift you back up.
Thank you Christie. I love the “dust yourself off when you are down and let him lift you back up.”
Gillian, this is so beautiful and honest. And this part struck me between the eyes: “I had been looking for… validation that I am the right mom for my child.” I think this is something every mom wonders, even for her biological children, but especially her adopted ones. They’ve gone through so much, and so have we, and we just want to be enough. Sometimes it feels miraculous that we get to be that person for our kids. And we do need validation that it’s right — it was right at the time of adoption, and it’s right still.
Thanks for sharing your truth. It’s mine, too. xo
Thank you, friend.
Validation is a huge part of my struggles as an adoptive mom.
I am so afraid I am messing up, and yet, I know that God is there, redeeming that, and that there is purpose in it.
Such amazing insight…thank you, Gillian, for sharing your experiences here, and for putting words to the emotions felt by so many mothers. You are a gift.
Thank you Katie. Thankful for you.
You are a wonderful mother to all your daughters. Thank you for modeling love to me.
Thanks Sandy. But I must admit, knowing that I could be a model for anyone is very scary. 🙂
Thanks for speaking into a very important topic. The challenges of parenting a child with a disability are substantial and parents who are predisposed to depression (in my experience as a physician specializing in child and adolescent psychiatry) will often progress into a full-blown episode during their child’s preschool years. I make a point of screening PARENTS for depression when I’m asked to evaluate a preschooler.
It’s sometimes easy to forget that kids live in families, and when one member of a family is struggling, everyone is affected. Your comments serve as a reminder that one of the best ways that parents can help their kids with disabilities is to seek out care for themselves. There’s truth in the flight attendant’s directives before the plane takes off…parents have to put their own oxygen mask on first so they’ll be able to attend to their child’s needs.
Wow, thank you Dr. G.
Evangeline has several therapies in place, and as a family we’ve decided that my therapy is just as important.
I love that you screen parents for depression. For some reason, mothers to kids with special needs don’t feellike they “get” to be down, especially if they have adopted.
And you are so right about the depression affecting the whole family.
Wow! I am always amazed anew with your clarity and vulnerbility especially since you are a pastor’s wife. I am too! You challenge me to a higher bar in honesty! Thanks!
Ann, thank you.
And I think those of us in ministry leadership should all strive to be more vulnerable. Don’t you?
I think as mothers we will always question and blame ourselves. I myself suffer with mental illness with a small presumed “healthy” boy. And I am always doubting my mothering. For instance Lenny isn’t talking barely (“I’m not reading and talking to him enough”) , he walked late (” I don’t play with him enough”) he’s not very cuddly (“I didn’t hold him enough”) etc. It can go on and on. I’m always worried if something is wrong and how it’s my fault. Like you said we need to just “love them” and have faith in them and most of all ourselves.
Thank you for your thoughts, Katy. Doubt indeed is a huge block in motherhood. It’s easy to blame ourselves, and question our parenting.
Thanks for pointing out that these things are usually apparent in any mother’s life.
Gillian, I am once again touched and amazed at your openness and willingness to share you life’s struggles. As a mother who struggles with both anxiety and depression, I often feel as if I am failing my children when I am struggling to keep my head above the surface. I think that every mother regardless of her children’s health, needs affirmation that she is doing what is right for our children. I think we often forget that all they truly need is to know they are loved and that God has a plan for their lives. It is hard though when we wonder if they truly know that. Thank you once again for sharing your story.
Thank you for speaking up about your story, too, Jean. I appreciate it.
Straight from life…and your heart, Gillian. God has your kids exactly where He wants them…loved by you and Sergei.
Thank you, Donna.
Oh gillian..I
xo
Wow! Just, wow! Thank you for being so vulnerable and honest. I found myself often needing validation too. I was just so unsure how I could be a good mother to my little one, only seeing my mistakes. As a result, there were many times I couldn’t see her break through because I was still looking at my failures. So very insightful. Thank you!
I hear you, Anna. Thanks for adding your voice.
What a precious gift you have given in this post– the gift of vulnerability that totally nullifies any shame. Thank you for that. I know so many mothers struggle with wondering if we are good enough or if we have what it takes to parent our children. And so many quietly suffer with the whisper of the enemy that they have failed. I know our God has not set us up to fail and I so agree with you Gillian, with God we can be, and in fact are, the right parent for our children. Thank you for sharing so beautifully and so powerfully! And may Evangeline grow ever stronger and more whole.
Beautiful thoughts Beth. THANK YOU!
Dear Gillian ~ I’ve followed your family blog since Polly had her stroke. I mostly want to say “Thank You”, for stepping out and sharing your depression. Depression, actually all mental health problems are such a taboo subject, but it seems to be more so for Christians. I, too, struggle with depression and it seems to me that I am always feeling the need to hide it from others. While folks are more than willing to talk about my cancer or the fact that I’m an amputee, who uses a wheelchair, there isn’t that same openness when it comes to my depression. (As I wrote this, I suddenly realized that it’s likely that they don’t even know that I live with depression!) All the more reason to Talk About It! It needs to be an issue that becomes easier to discuss and that has less of a stigma to it. We can only support each other in the best way…if we know What we need to be supportive of. I’m so glad you went back to have your medications adjusted and that it made you see Evangeline in a different light. Hopefully, this post will open the doors for more parents to reach out for the help they need and that it enables them to parent their children in a healthy way. Bless you! ~ jo
Thanks for your thoughts. Blessings!