When You’re Feeling Lost, Walk The Beauty Way (Our Seven-Year Anniversary)

We all know how it goes.

We wake up in the morning, and from the moment we open our eyes, something feels “off”. There’s a barrage of anxious thoughts about work and laundry and that text we forgot to respond to yesterday.

Where did these thoughts come from? Why are they slamming us now, before our feet even touch the floor?

We don’t know. We just know that there’s already a feeling of dread within, and we haven’t even looked at our email or news feed yet.

We feel lost and afraid; what can we do to bring even the faintest glimmer of peace into ourselves, much less this troubled world?

Fortunately, the universe is always sending us answers, always gifting us with teachers.

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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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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.

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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.

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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.

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

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