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.


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.


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


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How to Betray Your True Self (And Then Make Amends)

This is a tale of treachery, but it doesn’t start out that way.

‘Betrayed’ faces, 2011.

Instead, it starts with a group of direct-care assistants hanging out in the kitchen of the L’Arche home where we lived and worked in 2008. I’d just finished a strenuous workweek, and I was exhausted.

Why? I’d recently said yes to becoming a Home Life Coordinator. In addition to doing caregiving routines, I wrote schedules, mentored assistants, and oversaw home life. We had a number of crises that summer, so I served in the new position while training for it and simultaneously carrying out my former responsibilities. It was … not easy.

So why wasn’t I resting during my time away? Because I wanted to help a new assistant feel welcome … but really, I wanted to be in pajamas. In fact, I was about thirty seconds from heading upstairs to don my monkey slippers when another assistant — I’ll call her Lia — asked me if I could drive her to a party across town.

Every fiber of my being was telling me, No, honey, you cannot, not this time. You really need to rest. 

Every fiber, that is, except the ones that were saying, But Caroline! You’re the Home Life Coordinator! You have to show the new assistant how we care for each other in community! And the yes slipped out. I thought I was modeling ‘community,’ but I wasn’t. I was modeling betrayal.


Betraying your true self always takes a toll. You can get away with it for a while, but eventually, your self rebels. I know this because of what happened that afternoon. At that point in my life, I’d been taking care of everyone else’s needs and chronically neglecting my own.

Saying yes to Lia seemed like a small thing, but deep down, I knew better. It was the tipping point, the final straw. My body, mind and spirit were screaming at me, and I tried to ignore them. Again.

As I started the van, I had a caged, desperate feeling in my stomach, which grew worse when we hit traffic. I was so angry that I could barely speak. (And I didn’t want to explode at Lia; the situation wasn’t her fault.)

The round-trip drive took over an hour. It remains one of the worst hours I have ever spent. After I dropped Lia off, I started crying. Hysterically. I couldn’t stop the whole way home.


Serenity on the Gulf, 2013

If you’ve seen Brene Brown’s first TED talk, you know that she has this wonderful slide on which is written the word breakdown. But breakdown is crossed out, replaced by spiritual awakening.

That afternoon was a breakdown / spiritual awakening, because I realized: I don’t know how to draw lines. I don’t know how to say a true yes and no to others, or to myself. And that’s a problem. 

It’s a problem of faith, I think. In the short term, lying is easier. It takes faith to look ahead, to see where the covertly dishonest road leads.

It takes faith to be true to the yeses and nos of our hearts. It takes faith to believe that we are worthy of love and care. It takes faith to be honest about our actual capacity to give.

I’m still learning this kind of faith, but what I have figured out is that, if we want to be prepared for those ‘big’ Yeses and Nos, we have to start with small things.

We have to start with the things we hardly even recognize as choices. Going to bed when we’re tired. Getting off the phone when we’re no longer present to the conversation. Choosing the books we want to read, though they may not be the ones our well-meaning friends have lent us.

These things sound so small, so simple, so humble.

But then, when making amends, humble is a good place to start.


Do you struggle with your ‘yes and no’? Join the conversation in the comments!


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Coming Home: The Liberation I Found at L’Arche

Happy Memorial Day, U.S. readers!

This article was originally published in America, February 11, 2013, and is reprinted with the permission of America Press, Inc.,

I remember exactly where I was standing.

It was in a small hallway at a L’Arche home in Washington, D.C., when I met my friend and housemate Pedro. At the time, I was visiting L’Arche for a series of interviews. I had not yet received an official job offer, but even so, I knew that I would be coming to live and work there. I could feel it in my bones; this was where I needed to be. And amid this sense of assurance, a white-haired man walked up to me.

Traveling with L’Arche, 2008

He leaned in toward my face, speaking loudly and emphatically in Spanish. Suddenly, I wasn’t so sure about coming to live in the community. The man before me raised his arms and gestured emphatically, but I hadn’t the faintest idea what he was saying.

The foreign words were incomprehensible, and Pedro’s (not his real name) unique pronunciation, proximity and volume disconcerted me.

I wondered: How should I respond? Finally my companion translated a few phrases. Pedro was giving me a blessing, welcoming me into his home. I smiled and nodded, grateful for the prayer.

Yet I also thought: We’re going to be housemates? But I can’t understand a thing he says! God, are you sure?

The answer came back, almost before I’d finished the question: Yes.

So I took a deep breath, swallowed my bafflement and moved forward with the visit. And just a few months later, I was dragging my suitcase up the stairs and hugging my mother goodbye. My time as a live-in direct care assistant with L’Arche had begun.

An Unconventional Household

L’Arche (French for “the ark”) is a faith-based, nonprofit organization that creates homes where people with and without intellectual disabilities share life together. L’Arche began not as a crusade to change the world but as a single individual’s daring act of kindness and hospitality. L’Arche came into being in 1964 because a man named Jean Vanier, under the spiritual guidance of The Rev. Thomas Philippe, welcomed strangers into his life.

He invited three men with intellectual disabilities (Raphael, Philippe and Dany) to move from a local institution into his home in the French village of Trosly-Breuil. That first night was particularly challenging for all involved. In fact, Dany was gone the next day. But Raphael and Philippe remained with Vanier, and their unconventional home grew and gave rise to others like it.

At present, there are over 150 L’Arche communities worldwide, located in 40 different countries. L’Arche has made a significant contribution to social change and inclusion in the 40-plus years since its inception; Vanier’s recent Nobel Peace Prize nomination comes as no surprise to those who know L’Arche.

But in 1964, Vanier little dreamed that his act of obedience would ripple outward in such a profound way. In fact, Vanier’s first impression of L’Arche was that it was a failure.

Sharing life together, 2009

Most accounts of L’Arche’s founding mention just two men, Raphael and Philippe (and even those key individuals often go unnamed). Dany’s arrival and subsequent swift departure are largely omitted.

In a world obsessed with achievement, it seems strange to say that the first L’Arche household lost one fourth of its members overnight. And yet this first “failure” is an important part of the story, vital to understanding L’Arche’s “success” today.

Many community members will tell you that their first introduction to a L’Arche community is a study in paradoxes. Coming to community is both illuminating and unsettling, comforting and disorienting.

Likewise, my first meeting with Pedro felt like a failure in that I perceived him as a stranger, unknown and unknowable. Yet at the same time, I knew that I was being led to live with him, to become a part of his family. It was a strange sensation, knowing that this man was a part of my path but not having the faintest idea as to how I might connect with him.

My Journey to L’Arche

Even so, remembering how I came—or shall I say, was brought—to the L’Arche community helped me to persist in forging connections there. L’Arche was an unexpected twist in my life story. Despite the fact that my younger brother, Willie, is on the autism spectrum, I never suspected that I would care for others with special needs after graduating from college.

I thought I would be a full-time writer—and now I am—but it turns out that finding a place among those with special needs was a prerequisite to finding my story, finding my voice.

Out to supper, 2010

My path to L’Arche became clearer when I learned more about Jesus’ life, how he reached out to people with special needs who were outcasts from society. Jesus loved people with all kinds of disabilities, and with that comes a tremendous secret that we rarely acknowledge: With or without a formal diagnosis, we all need the kind of compassion and care he offered.

Another paradox: We all are in need of support, yet we all have something to offer one another. We all have gifts to give. And it is on this subversive truth that L’Arche stands. L’Arche communities seek to be a place where the “least of these” are the first of all.

Of course, doing so takes time and deliberate effort. Putting people with special needs first is not what society teaches. In an era when essential Medicaid funding is cut more and more every year, when many caregivers earn the minimum wage or less, caring for the least of these is not an easy path.

Furthermore, many adults with intellectual disabilities move slowly; in order to meet them where they are, we must slow our frantic pace. And it is hard for us to cultivate that kind of loving patience in this age of super-fast everything. Yet it is precisely because it is so hard for us that it is so fruitful; we need this change of pace more than we know.

Working in ministry alongside people with special needs requires that we change, and that change is, in the words of Madeleine L’Engle, “both a challenge and a joy.” To be sure, there is treasure to be found in the special needs world.

My friends at L’Arche have been my greatest teachers in the art of enough and the spirit of sufficiency. They have taught me to stop my flurry of activity, to pause and stare out windows and watch the birds fluttering in the trees, to nurture friendships and breathe deeply.

Sitting with Pedro

These gentle lessons served me well when it came to building a relationship with Pedro. Since I did not know what to do, I did the same thing Vanier did: I started small. I practiced Spanish with my fluent housemates. I sat with Pedro, letting the rhythmic cadence of his words wash over me (and, hesitantly, I pronounced a few phrases in Spanish in response).

Gradually, the man who seemed like a stranger became a beloved friend. Pedro revealed to me that, as Leo Tolstoy wrote in Anna Karenina, “If it is true that there are as many minds as there are heads, then there are as many kinds of love as there are hearts.” I came to love Pedro before I could fully comprehend his speech. Why? Because even though I could not understand his words, I grew to understand his heart.

Ribbon-cutting ceremony for new L’Arche home, 2010. Photo Credit: Daniel Zundorf

Soon after, an unexpected miracle occurred. I woke up one day and found, to my immense surprise, that I could understand Pedro. It was as though someone had flipped a switch inside my brain; hours and hours of listening had finally paid off.

Soon, I took delight in translating Pedro’s speeches for visitors. I had despaired of ever feeling connected to Pedro; now, I helped new members to connect with him. I had the privilege of helping others dismantle their barriers, and I never tired of seeing it, that moment when people started understanding Pedro for themselves. I knew just what it felt like: liberation.

Indeed, that is the work of L’Arche, to break down barriers between people with and without intellectual disabilities. The organization’s charter states, “In a divided world, L’Arche wants to be a sign of hope.”

When people visit L’Arche homes, they are struck by the ways in which the members depend upon one another. Core members (individuals with intellectual disabilities at the center of community life) depend on direct-care assistants for help with personal care tasks like showering and dressing; in turn, assistants depend on core members for invaluable things like friendship, support and mentorship.

Yet it is also important to remember that implicit in the statement, “L’Arche wants to be a sign of hope,” is what L’Arche does not attempt to be. It does not pretend to be a solution to the problem of providing for all individuals with special needs.

Instead, L’Arche seeks to signify a larger reality: God’s love and the promise of welcome for the stranger within us all.


How have you experienced ‘breaking down barriers’? Join the conversation in the comments!


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