Down syndrome adoption … four years in

“Ma ma ma ma ma,” I place my palm flat against my face and pat my lips, take my daughter Evangeline’s soft, doughy hand in mine, and do it with her.

“Ma ma ma ma ma.”

She likes it. So I do it again. Evangeline is non-verbal, but she will mumble sounds from time to time.

I yearn to hear her say “ma.”

We lie in her bed at dusk, the sun fighting its setting, just like my six-year-old fights sleep. The house is eerily quiet, unusual for a family of six.

Evie is relaxed by my side. I put my palm on her mouth and pat, “Ma ma ma ma ma.”

She smiles.

Down syndrome adoption then

Evangeline has been home four years today. I looked back on this blog to see what I wrote last year, and was struck with a similar theme.

I wrote about her finding me in the night and cuddling in … a rare occurrence and a priceless gift … that of my daughter’s momentary affection.

I recalled my first night spent with her in Ukraine… and the horror that ensued as I watched her nightly ritual of putting herself to sleep.

After panning her head from left to right and back again a few times, she planted her pudgy little arms onto her legs while sitting. She started to rock back and forth, all the while grinding her teeth incessantly, and hard. She closed her eyes here and there and chewed her tongue.

She rolled over to the concrete wall, covered with meager thin wall paper probably dating back to the 1950s. Upon making contact she leaned back and proceeded to smash her forehead up against the wall.

This was the only time I broke my role as observer that night.  I placed my hands on her shoulders and whispered in Russian, “nelza, tak ne nada.”  “No, no, you don’t need to do that”.  My husband and children and I lived in Kiev for almost four years as missionaries until the birth of our third daughter.

I could have never guessed that God would have me use my Russian for something like this, though.

Evangeline shrugged me off and I moved her away from the wall. I pulled the blanket from my feet and wedged it between her and the cold, hard surface. She did not contest. Maybe she wasn’t aware she could? After her silent concession she made do with rubbing her head against part of the wall and part of the blanket.

My words pounded with pain.

Our adoption process has been arduous.

Evangeline and I have stumbled along, attempting to learn a mother/daughter dance, two steps forward in our bonding, a giant leap back. We’re awkward. We step on each other’s toes. I’m sure I’ve made mistakes. And I feel like at times, she still isn’t open to my love.

And worse yet, at times, I’m not open to her.

 Down syndrome adoption now

Another year has passed. Have we made noticeable progress?

Honestly, it still depends on the day.

It depends on Evangeline.

It depends on me.

We still engage in the dance of learning to know and trust each other, and I wonder, will the dance ever end?

I wonder if she will advance from her cognitive level (12 to 18 months). I wonder if she doesn’t, if I will have the stamina and ability to parent her well into adulthood. I wonder about her becoming a woman. I wonder about my bones losing muscle and agility.

I worry.

And most days it is still very difficult.

I think Evangeline has autism.

I’ve taken her twice to be tested since she has been home, and both times the verdict was post-institutional behavior that she would grow out of.

But it has been four years, and she prefers to rock, and look at lights, and listen to music over making eye contact for more than a fleeting moment.

We are taking her to be tested again next week.

“Autism” scared me to pieces when Polly was born. I was convinced she would have autism in addition to Down syndrome. She didn’t.

But I think Evangeline does.

And it scares the shit out of me, even though I know and love individuals with autism, and even though I’ve known in my heart since meeting my daughter in the orphanage in Ukraine that this was a possibility.

But here’s what has changed.

I don’t wonder if I can love her, because I do. She is no longer Evangeline, my adopted daughter. She is simply my daughter, and I suspect that will greatly enhance the quality of our future.

If she has autism, I’d prefer to know, and get help. On some level, it will help with the mom guilt I carry. That guilt of not being able to reach your daughter. That guilty of not doing/being enough.

Something I am afraid of (autism) may finally be diagnosed, and maybe it won’t. So what can I do, but put my daughter’s soft palm on my lips and whisper in her ear “Ma ma ma ma ma.”

I breathed her in, as we snuggled in the dark of night, thankful that this girl who used to choose to bang her head against the wall to fall asleep now, at least some nights, chooses me.

It’s not perfect, this relationship between my youngest daughter and me.

But it is a relationship.

A mother/daughter relationship, complete with ups and downs, and the continual frightening, beautiful process of knowing one another, the severe and sublime work of bonding for the glory of God.