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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To See Beauty First: A Video

Hello and Happy Monday!

Since I’m traveling this week, I’d like to share a video with you in lieu of the usual post. It’s a 10 minute talk I gave as part of the Faith Inclusion Network’s March 2013 “That All May Worship” conference. (I thank Karen Jackson for her wonderful work in organizing the event, and for sending me the recording as well.)

A Wish Come Clear readers who receive posts via email may recall the story I sent out about my experience speaking at the conference two months ago; it’s reprinted below.

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Please pardon the at-times-loud background noise in the recording (but if you’ve read the story, you’ll have a good idea why that’s happening). Enjoy!

This past weekend, I traveled to Norfolk, Virginia for the Faith Inclusion Network’s biannual, “That All May Worship” conference. I was honored to be a guest speaker at the opening banquet, and to lead a breakout session on L’Arche* as well.

At the Thursday night banquet, I was the first speaker to take the stage. The usual shivers ran through my stomach; the usual adrenaline pumped through my veins. But once I started speaking, everything else fell away, and I was able to lose myself in the stories.

That is, until I heard a masculine voice coming from the foyer. It was loud, yelling something I couldn’t distinguish. I thought it sounded angry, but I couldn’t be sure.

I kept on speaking without pause, but inside, I wondered, Who could it be? Are they supposed to be here? What’s going on? I couldn’t see the person, but for a moment, I was afraid. Visions of violence moved through my mind; was it some kind of radical protester, intent on harm? I didn’t dare turn my head to look.

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But then, as the man and his companions moved toward the center of the room, I realized: here was a man with special needs, coming in late, just making some noise. No big deal. I felt my shoulders relax, and a smile spread across my face. Thank God! It wasn’t any of the terrible things I’d feared. It was going to be all right.

In fact, I actually felt more comfortable giving my talk after that young man came in. Why? He reminded me of my friends at L’Arche (some of whom are wont to purr and shout phrases in Spanish during Catholic Mass). With his arrival, I felt as though I was among family.

Oftentimes I think we get so afraid of what might happen that we are blind to what is happening. We get all worked up about something we perceive as terrible, when in reality, we’re just frightened by our own thoughts, our own imaginings.

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I wish I’d had the chance to meet that man after I spoke; if I had, I would have thanked him. I wish I could have told him how he helped me, how glad I was that he had come to the event.

As Amy Julia Becker wrote in her recent post, Missing Out on Beautiful, “I feel as though I have been let in on a cosmic secret because when I look at Penny, I see her beauty before I see anything else.” (Amy Julia’s daughter, Penny, has Down syndrome.)

When I read those lines today, I couldn’t help but think of the stranger, the man from the conference last weekend. It’s clear to me now: he was beautiful because he reminded me of those I love.

And love is what gives us the ability to see beauty first.

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How do you ‘see beauty first’? Join the conversation in the comments!

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*L’Arche (French for ‘The Ark’) is a faith-based non-profit that creates homes where people with and without intellectual disabilities share life together.

Why I Am Not Afraid of Having A Child with Autism

When I’m feeling out of sorts or uninspired, my favorite remedy is to go for a long walk. Such was the case this weekend, when I found myself stressed on Saturday morning. So, I headed out the door.

After a mile of walking, I felt myself starting to smile. The tension within abated as I noticed the beauty around me. Blooming flowers, fluttering birds, blue skies … all worked together to move my mind from anxiety to appreciation. As I walked through Rock Creek Park, I felt the noise within quieting down.

And in the newfound quiet, I remembered a particular conversation. Allow me to share the story:

This past Thursday, I was babysitting for my friend Allison’s son. We headed to the toddler park, as we do whenever the weather is fair. My friend’s son loves the park (especially the swings), and I love being outdoors and watching him explore the world.

As my friend’s son played in the sandbox, a woman came over to me and began a conversation. I was surprised, but pleasantly so; she reminded me of a cousin of mine, and we talked companionably. Her name was Kim, and she had three children at the park that day.

When I asked about her kids, she told me the story of her son’s birth. She hadn’t been someone who always wanted kids, she said, but when her son was born, she was hit by a wave of love too big to understand or explain. She spoke with wonder in her voice, and I listened intently.

The conversation turned to life with toddlers, and she mentioned a period in which her son hadn’t hit certain developmental milestones. She said, “We were afraid, you know, that he was going to have developmental delays, or autism. But he didn’t.” Her tone was matter-of-fact. I simply nodded.

It was such a small moment, but I’ve been turning it over in my mind ever since. Part of me wanted to say something like, “My brother Willie has autism.” But at the same time, part of me knew that Kim’s words were simply a statement of how she’d felt at the time, not a judgment about autism or people with autism.

Simply put, she’d been afraid. And I understood that.

I, too, have had moments in which I’ve feared having a child with special needs…and having a child, period. I have had moments in which I am so daunted by the prospect that I hesitate to think about becoming a parent. Having grown up with my brother, having lived in L’Arche, I know what a tremendous responsibility it is to care for someone with a high level of need. (And yes, all babies and toddlers fit that description!)

That said, I cherish relationships with people who have autism and special needs. They have changed and blessed my life in ways too numerous to count. I cannot imagine life without the people at L’Arche, without my brother, without my friends. (Likewise, my friends who are parents tell me that, while their children’s needs can be demanding, their very existence is an incredible gift, one that continues to transform them.)

Even so, we live in a world that is afraid of difference and disability. We live in a world wherein many parents abort when doctors tell them their babies might be born with special needs such as Down Syndrome. We live in a world wherein people with special needs are discriminated against from day one.

It’s no wonder that parents (and potential parents) are afraid. We’re afraid of a level of need we think won’t be able to meet. We’re afraid of children we don’t know if we’ll be able to relate to. We’re afraid of the world’s judgment of such children, and we’re afraid of our own judgment, too.

As always, we’re afraid of what we don’t fully understand.

As I walked through Rock Creek this weekend, a crucial question sounded within me: Am I afraid to have a child with special needs? Quickly, my answer arose — defiant, strong, compassionate, certain.

Tears started running down my cheeks as I realized …

I am not afraid of having a child with autism. Or Down Syndrome. Or Fragile X. Or any of the other -isms and diagnoses there are in this world.

It was such a simple realization, but its power — and its implications — took my breath away.

I used to be afraid, but now, I’m not.

Before, I felt as though I could say yes to a child with special needs, but that I’d say that yes in fear and trembling. I felt guilty for feeling afraid; after all, I know and love many people with special needs. But now, after so many years of carrying this heavy burden, it has tumbled away.

The relief I feel is so huge, I have to sit down. I walk over to a picnic shelter, and let myself rest as the tears fall.

I’ve feared the possibility of being a parent of a child with special needs because I’ve lacked the faith that I will be able to welcome and love and celebrate that child exactly as they are. But as chickadees flit around me, pecking at crumbs, I know that the love Kim spoke about having for her child has (somehow, inexplicably) hit me too. There is only the possibility of such a child in my life, but I love her (or him) even in the abstract.

And in that moment I catch a glimpse of what it means to think of ourselves as children of God. It means that we are cherished long before we are born. It means that each of us is a good and perfect gift in our own right, needs and weaknesses and frailties and all.

And although we might feel like strangers to true acceptance, we are always invited in to a new vision of beauty … one that would not be complete without people with autism and special needs.

As I rise to walk home, I spot an eagle soaring overhead. And I think to myself: I’m only human. I will never feel ‘prepared’ to be a special needs parent (and that may not be the path that my husband and I are led to walk). And in the course of my journey, I will probably feel afraid again.

But the fear will never have the same power now that I have felt the love.

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“She told me I swallowed the blue pill. She told me I could never go back. But that I held a key to a door that no one else does.” -Kelle Hampton, Nella Cordelia Birth Story

You, the friends, families, and loved ones of people with special needs — you have helped me to move beyond my fear to a place of greater faith. Thank you.

If this post spoke to you, please share it with those you love.

Finally, I’ll be on vacation next week, so look forward to a new post on April 2nd!

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