In My Arms: A Guest Post by Gillian Marchenko

Happy Holiday, friends! Today, we’re opening our doors to a guest.

It’s my pleasure to introduce Gillian Marchenko. (Her tagline: “The world is full of people who seem to have it all together … Gillian speaks for the rest of us.”) She’s an author and national speaker who lives in Chicago with her husband Sergei and four daughters.

Gillian writes about “stumbling faith, Down syndrome, adoption, depression, motherhood, and lots of grace.” I shared a guest post on Gillian’s blog earlier this year (“The Most Beautiful and Terrible of Promises, Lessons Learned from my Brother with Autism”), and I’m happy to bring her writing to you today.

Gillian’s recently-published memoir, Sun Shine Down (T.S. Poetry Press, 2013) is a courageous, heartbreaking story about her journey to love and accept her daughter, Polly, who was born with Down syndrome. (You can read my Amazon review here.) Whenever I read Gillian’s words, I am able to see more clearly that love is the only thing that matters.

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In My Arms by Gillian Marchenko

“Mom!” Polly yells out in her sleep. Her body thrashes to and fro on our queen sized bed. Her legs kick the covers off. Sweat glistens her forehead.

The house is quiet. My husband and two older girls went out for the night. My youngest has been asleep for an hour in her room. I bedded Polly in next to me, thinking that my husband would move her when he got home, and that her slight of breath, up and down, methodical, musical, may inspire me as I grab a few last minutes in the day to write with our fuzzy white dog at my feet.

“Honey, what’s wrong. Tell Mama what’s wrong.”

She doesn’t respond but continues to fuss and squirm.

“Shh, there, there,” I attempt to settle her back into her dream cycle. This part isn’t new to me, a seasoned mother of four. There have been countless nights in the last twelve years where I’ve brushed wet hair off a forehead, hummed a melody, and lulled a child back to sleep.

But my coaxing doesn’t work.

“What’s wrong, Polly? Does something hurt?”

My daughter nods, and a shot of electricity zaps my extremities.

When Polly was born at 37 weeks, she wasn’t breathing. The doctors resuscitated her, and she spent the first three weeks of her life in an incubator fighting for her life.

By the time I felt the weight of her tiny, five-pound body in my arms, I had already been informed of her diagnosis of Down syndrome.

I wrote about that time in my recently published memoir Sun Shine Down. Polly too weak to leave her plastic dome and me, too weak to fathom the curve ball of Down syndrome.

Sometimes my arms ache to hold Polly the baby. What I wouldn’t give to scoop her up, to hell with my fear of the unknown, to hell with sickness, and to hell with stigmas hidden within, stigmas I didn’t know existed in me until I heard the words Down syndrome.

“Show me where it hurts.”

Polly gestures towards her head.

“Your head hurts?”

She nods yes again. I pull her up onto my chest. It is not an easy task because she is now seven years old.

But we don’t screw around with headaches in this family.

Three years ago, Polly had a catastrophic stroke which resulted in the diagnosis of Moyamoya, a disease that thins the arteries in the brain to the point of strokes and seizures. Unbeknownst to us, this disastrous disease had been causing mild strokes in her body throughout her short little life.

Polly underwent two brain surgeries that diminished the chances of recurrent strokes and seizures from 67% to 7%. She rocked the surgeries, actually running circles around me after the second one, just days after her neurosurgeon cut through skin, skull, and brain to create new blood flow for our girl.

“Here, honey, let me see.” I force Polly’s face towards mine and examine her for signs of stroke. No twitching, no loss of motor control. The fearful moment releases into the air around us. I hold her to my heart like I longed to do after her birth. She settles, and sinks into me. My body is quicksand. I engulf her.

We’ve danced around death too often.

Polly is here tonight, in my arms. I don’t take it for granted.

She’s here. I feel her weight. She is happy. She loves her life. Her life overflows with joy, so much so that she splashes her joy on those around her, and continually plugs up my heart, so that I can be filled too.

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What relationships teach you about acceptance? Join the conversation in the comments section below!

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What Do I Have to Offer? A Story of Wine, Wonder, & Worth

As she spoke, the rest of the women in the circle grew still.

We were gathered to celebrate a friend expecting her first child, and together we’d shared stories and blessings for her journey. We’d laughed, cried, and laughed some more, but now we were quiet.

Hello to a friend’s sweet baby. (2012)

We were listening to a young woman who shared that she and her husband wouldn’t be having children. Her story moved us all. But she didn’t just focus on herself; she encouraged the mother-to-be, offering help and support.

Afterward, I made sure to say hello to her and tell her how much I appreciated what she’d said. (Out of about twenty women, only a trio of us weren’t mothers, so I felt a sense of solidarity.)

“Oh,” she said, with a downward glance, “I wouldn’t have said so much if I hadn’t been drinking the wine.” Translation: I just bared my heart to this group, and now I’m feeling pretty darn insecure about it. It’s cover-up time.

“But what you said was real,” I told her. “It meant something to me and to everyone else, because it came from your heart.”

“Oh, well …” she trailed off. By then, other women had joined our conversation. They were nodding; they’d felt the power of her sharing.

She didn’t believe us. “Thanks, but … ” she said. Her ‘mask’ slipped again as she said, “Really, though. If I’m not a mother, what do I have to offer here?”

At that point, another women pulled me aside, and the conversation ended. It was probably for the best; if we hadn’t been interrupted, I might have said, “Are you kidding?!”

What I think the woman meant was, Since I’m not a mom, what do I have to offer this circle of mothers? And her tone of voice implied that the answer was, Nothing. Nothing at all. 

Despite the evidence, she didn’t believe that her contribution was valued. Her feelings of insufficiency ran deep. To understand them, I had to search my own heart.

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At home together, 2013

Her words have haunted me, and I’m starting to understand why. It was easy for me to recognize that this lovely woman wasn’t seeing herself clearly. But then, how many times have I been discouraged, dismissing my contribution? How many times have I thought to myself …

If I’m not a full-time caregiver anymore, does my work still have meaning?

If I don’t get this job, win this person’s approval, or pass this test, am I a failure?

How many times have I conflated my value as a human being with what I accomplish?

Furthermore, how many times have I seen others make judgments about the value of individuals with autism and special needs? How many times have I come up against the implicit question: If this person doesn’t have so-called ‘normal’ abilities and aptitudes, what can they possibly contribute?

And I cannot begin to change the world until I do the work of eradicating these lies from my own heart.

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I have just one request to make of you: go through your day believing that you are a beloved child. If you start slipping, ask yourself: Do I question the worth of a newborn baby (or even a puppy or kitten), just because that being doesn’t ‘contribute’ in a measurable way?

Sure, my husband and I joke about our kitten, Bootsie, not ‘pulling her weight’ in our household. But we laugh about it precisely because it’s so ridiculous. Bootsie contributes to our home and happiness every day, just by being herself.

What if we walked around with the same assurance? What if we trusted that, no matter what we did or didn’t accomplish today, we would still be worthy of love? How freeing would that be? And, paradoxically, how much more would we be empowered to … well … give?

This is what I wish I could have said to that wonderful woman I met at the party. But maybe I wasn’t meant to give her my words. Maybe I was meant to give her the look of honest, unfettered disbelief I felt on my face.

Maybe incredulity was the best answer after all.

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Fed up with an ‘impossible’ sibling? Tired of a family situation that may never change?

Pick up I Was a Stranger to Beauty (ThinkPiece Publishing).

*If you don’t have a Kindle, don’t worry! You can use Amazon’s (free) Kindle Cloud Reader.

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