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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10 Reasons to Give Thanks, 10 Days Before Thanksgiving

It’s that time of year.

Mom, thanks for making me such a lovely princess costume for my very first ‘dress up’ Halloween!

We’re putting away the Halloween costumes (or, in my case, enjoying photos of past ensembles!) and making plans for the upcoming winter holidays. We’re hitting the road and opening our doors. And in the midst of it all, we’re giving thanks.

At the moment, I’m thankful to have 3 guest posts (From Helplessness to Courage: A Sister’s Story at Autism Speaks; Love Takes the Lead: A Story of Struggle at The Bold Life; Becoming Whole at My Autism My Voice) up this week.

And I’m thankful that, even though this week has been a difficult one for Willie, our parents, and me, it has been a time of grace as well.

& I am tremendously grateful for you.

Your readership. Your time. Your lovely, inspiring comments. The ways in which you share from the heart.

And sharing from the heart is what my favorite writers do best. In honor of the coming holiday, I want to share with you a (short, incomplete) list of writers who have inspired me this year.

You can peruse these posts over the next 2 weeks, since A Wish Come Clear will be taking a brief break for the holiday. (Posts resume on Monday, December 3, 2012.)

The writers listed below share stories of special needs with grace, power, and beauty, and I am so glad that they have the courage to do so.

I am thankful for (in no particular order) …

1. Martha Beck, author of Expecting Adam: A Story of Birth, Rebirth, and Everyday Magic (among others)

Recommended Read: Receive with an Open Heart: Giving and Accepting Gifts of Real Love

2.  Kerry Magro, fellow columnist at Autism After 16 and all-around amazing human being

Recommended Read: Goodbye, Hello

3. Priscilla Gilman, author of The Anti-Romantic Child: A Story of Unexpected Joy

Recommended Read: Ernie and Bert’s Mother

4. Kelle Hampton, author of Bloom: Finding Beauty in the Unexpected.

Recommended Read: Tea with Milk and Honey

5. Rachel Simon, author of The Story of Beautiful Girl and Riding the Bus with my Sister (and others)

Recommended Read: Chapter One, The Story of Beautiful Girl

6. Amy Julia Becker, author of A Good & Perfect Gift: Faith, Expectations, and a Little Girl Named Penny

Recommended Read: Ann Coulter, The R-Word, and John Franklin Stephens’ Wise Response

7. Rob Gorski, who blogs at Lost and Tired

Recommended Read: Never Take for Granted

8. Gillian Marchenko, author of a forthcoming book about Motherhood, Down Syndrome, & Surprising Beauty

Recommended Read: Tutu Much

9. Lana Rush, who blogs at Along Came the Bird

Recommended Read: Oh Joy!

10. Ellen Stumbo, who blogs at These Broken Vases

Recommended Read: Defining Moment {A Guest Post}

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What are you thankful for this week? Join the conversation in the comments below!

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