Our current series, “Spend It Offering Light” (#OfferLight) continues today with a beautiful story from writer and autism parent Liane Kupferberg Carter and a giveaway too!
In fact, from here on out, each post in the series will include a giveaway. First time reading? Learn the story behind our series here. “Spend It Offering Light” features real people turning their fears into something that helps others, into light. Please welcome Liane Kupferberg Carter!
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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“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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Feeling less-than? You get the thumbs-up from me.
“Sometimes, I feel like such a failure,” my friend confided. “My house doesn’t look as clean as my friends’ houses do. I have a job, and two children under the age of three. But I think I should be doing a better job keeping the house clean.”
I wanted to interject, but I had a feeling there was more to the story. She continued, “After feeling that way for so long, do you know what I found out?”
“What?” I asked, leaning forward.
“Almost all of my friends who have kids … ” She paused for dramatic effect. “… also have housekeepers! As in, cleaning services!”
“Seriously?” I said, laughing.
“Seriously,” she grinned. “All this time that I was judging myself for not cleaning more …”
“… When you were probably doing more than any of them,” I finished.
***
This conversation was an excellent recounting of what I like to call, “an attack of the less-thans.” Caregivers are particularly prone to these attacks. Though everyone’s “less-thans” will sound different, here are a few identifying characteristics:
“The less-thans” seem obvious when someone else is going through them, but they’re much more difficult to identify from within. For example, when I used to get down on myself for not achieving my goals, my thinking seemed perfectly reasonable. However, when I’d see a friend go through the same process, I’d sense immediately that she was being way too hard on herself.
“The less thans” are insidious. They are pervasive. And they are lies.
***
However, ignoring “the less thans” doesn’t work. Neither does trying harder … in fact, “the less thans” would love for you to try harder to prove your worth. If you run yourself into the ground trying to be a flawless caregiver, you’re playing their game, and you won’t win. Instead, what’s needed is compassionate listening, either from your wiser self, or from a trusted friend.
For example, writer and special needs mom Amy Julia Becker told the story of a time when her daughter, Penny, felt ‘less than’ at school. As Amy Julia wrote in a recent post, ” I wanted to cry. For [Penny]. With her … My little girl had been carrying around this burden of knowing what she was supposed to be doing and yet feeling totally incapable of doing it, and I hadn’t known.”
We carry around secret feelings of failure when what we really need to do is share them aloud. We think, “I don’t want to burden anyone,” but speaking truth about our perceived failures makes our load lighter right away. When we give voice to these thoughts, we can figure out a constructive action to take (my friend, for example, is considering hiring a housekeeper!), and/or move toward greater acceptance of where we’re at.
Bootsie in her box
Today, when I felt a wave of “the less thans” hit, I stopped and took a break from my work. I considered the thoughts I’d been thinking, thoughts of judgment and scarcity. I listened to myself with the compassion of a friend, and said, “Hun, those thoughts are not serving you well. And also, they aren’t true. Let’s let them go, and find better things to think of.”
With that in mind, I walked over to Bootsie, who was sleeping nearby, in her little box-bed by the window. As I stroked her warm fur, I thought about how the kitten I dreamed of since childhood was finally here with me. I thought about how I was sitting in the writing room I’d always longed for, working for myself. I thought of my husband in the next room, of the love I hardly dared to dream I’d find.
I started to feel better. Better, and also a little silly. I’d been listening to these fatalistic thoughts, when all the time I was surrounded by evidence that dreams can – and do – come true.
The antidote for “the less thans” is gratitude. The cure is listening to a different story: the story of what you’re thankful for and how far you’ve come.
