Tag Archives: no limits

Who could have imagined?

Yesterday a woman who works at Barnes & Noble walked right up to Lucia and greeted her–she knew her but she didn’t know me.  One of Lucia’s favorite nurses, determined that she wouldn’t become isolated with our recent move to the country, regularly takes her on outings to book stores, walking trails, parks, and libraries, and this woman had read books with my child many times!

One day when I was working from home and a friend stopped by the house, Lucia was out on one of these excursions unbeknownst to me.  The friend was a little disappointed.

Lucia has her own social life, I chuckled.  Who would have imagined?  I thought.

Indeed, I think it’s easy given Lucia’s diagnosis, physical, and cognitive challenges to presume that she lives a limited life, but this is so far from the truth.  Precisely because we’ve been forced to rely on nurses, doctors, and therapists to help us care for our medically complicated child, Lucia’s social network has certainly widened beyond the typical two and a half year old.

At the outpatient facility where Lucia does her therapy she’s not usually interested in toys, but she always cranes her neck to see the other children running and jumping and shouting.  This morning Lucia’s nurse, having just returned from China, brought her a Chinese children’s book and Lucia cocked her head to listen as the two of us yammered on in Mandarin about her trip.  Several months ago, one of her nurses put her hair in Jamaican braids!

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Lucia taking a nap on the D& R Canal in NJ.  My photo.

I think about the incredible richness of the life Lucia leads and I am in awe.  Our minds, our predictions, our perceptions of life with disability often fail to see beyond the presumed downside of dependence, medical necessity, and constant care.  But Lucia’s needs have, in such a good way, forced us all to expand our very limited social circles and our very limited notions of what life with disabilities entails.

A month or so ago when I spoke on the phone with a parent advocate about Lucia’s impending transition out of the state’s early intervention program and into school, she compassionately yet inaccurately projected another presumption onto me:  “Oh I’m sure your heart is just breaking at the thought of her going to school all day, on that big bus.  I’m sure it is so hard to see her go.”

Perhaps it would be hard to see Lucia get on that bus if she hadn’t already been living her life so fully.  But knowing how much Lucia enjoys all of these people, adventures, and diversity in her life, my husband and I are decidedly eager and excited for her to start school.  Perhaps another thing all these doctors visits, nurses, and therapists have prepared us for is trusting others with our kid, knowing it’s so important to share her rather than shelter her from the world.

When I look in awe upon Lucia’s full life, I cannot fathom the wisdom of God.  This is precisely the life I would want for my child, and yet, who could have imagined this life in particular?  Who could have imagined this village that God has provided, this little social butterfly despite her lack of words and gestures?  Who could have imagined that it would take the world and its limitless possibilities to help us see how Lucia has expanded all of our lives?  Who could imagine that a life with disabilities could be so rich and nuanced and bold and grand?

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Every time I look at this photo of Lucia I can’t help but smile. (My photo.)

Well, God, of course.  

And thank God for that!

Women of humility, women of valor

Rachel Held Evans is featuring an essay contest and a series on her blog, encouraging people everywhere to bless women in their lives who are women of valor (Proverbs 31) by sharing their stories.  She’ll be posting some of the winners this week, and you should definitely check out these inspiring biographies (there’s even one about an American foster mom!).

Not surprisingly the women that came to my mind are the foster mothers I’ve gotten to know over the last two years in Southwest China.  My essay doesn’t necessarily fit the mold, because I couldn’t choose just one, but maybe you’ll see why…

A foster mother and her foster daughter.  Photo by Evan Schneider.

I’ve only been home for a month, so I’ve just begun to pour over the field notes about foster families from which I will craft my dissertation.  I’ve been sitting in storied libraries and campus clubs on the grounds of a prestigious American university and finding myself instead along dirt roads that lead into China’s countryside, reminded of hope and transformation in unlikely places.

The picturesque terraces of China’s Guangxi province.  Photo by Evan Schneider.

These women, who foster China’s abandoned and disabled children, are by and large elderly, poor, and humble.  They grew up in a period of fundamental instability, their childhoods, youth, and education interrupted by one of the most dramatic revolutions the world has ever known.  Many hardly completed middle school, barely speak Mandarin, the official language of modern China, and their plain clothes, heavy accents, and the dirt under their fingernails betray them wherever they go as poor, ‘backward’ farmers.

But while it is perhaps their humble circumstances that first led them to foster these children with all of their so-called disabilities and deficiencies (they earn a small stipend from the state for doing so), it is that same humility, that equips them, as well.  These parents may not understand complex diagnoses of autism or cerebral palsy.  They don’t trust modern medicine, and they don’t believe there’s much more to raising a child besides food, clothing, shelter, and love.  But it is because they don’t understand the upper limits of these children’s abilities that they hardly see limits at all.

A foster mother and her foster daughter in Guangxi, Guilin.

I have seen overwhelmed experts, officials, and parents in China point out difference and disability among children who are abandoned in an increasingly competitive society that demands perfection from its singletons.  “Look, he walks with a limp,” a social worker might exclaim, of a boy who is doing his best to fit in in an urban slum, or “there’s something wrong with her ear,” of a perfectly lovely child. 

Hot peppers. Photo by Evan Schneider.

But when I turn the corner, off a dusty street and look out on the limestone peaks and the rice paddies, I’m not only greeted by the sweet, spicy fragrance of drying peppers from which these people make their living, but also the laughter and the sight of disabled children playing in the streets, and the chorus of older parents who can only see the possibilities for these children versus the limitations.

“This child doesn’t have autism” one mother says defiantly of the little girl who has been in her household for just six short months.  “She can listen, she understands me, see, look how well-behaved she is.”  “These children couldn’t walk when they arrived from the orphanage,” another beams proudly as two girls with cerebral palsy totter around the dirt floor.  And this July, in a little country house flanking green fields, under a pile of ashes on a simple altar in a dark room, I met a ten year-old girl whose mother could not cease in singing her praises.  “She’s gifted and she’s smart,” the mother bragged as the little autistic girl knitted, read for us, and even spoke some English.

The author with a foster family in Nanning. Photo by Evan Schneider.

I tried so hard to hide the fat, sloppy tears that streamed down my face in this place where such displays of emotion are discouraged.  Indeed, when I praise these women of valor, for loving these children as their own, for seeing what they can do when others can only see what they can’t, they shrug off my accolades, dismissing as matter-of-fact this life-changing work that they do everyday.

But when the children are eventually adopted half a world away or by rich, urban Chinese families, publicly, these mothers embrace the bright future they feel they can never give these children, and then weep hot tears in the quiet of their homes.  “When the first child left, I didn’t eat or sleep for a month,” one mother comments.  “I couldn’t look at the photos.  The only cure for the heartache, is to take in another,” she says, smiling, and gazing at the children playing happily at her feet.

I cannot possibly choose a single woman of valor, because over the last two years in China I’ve met so many.  And while the world hears frequently of women in China who so painfully and tragically abandon their newborns, I marvel at such love as this, that flows forth from the humblest of homes, and such valor among these women that leads them to foster two, four, or fifteen children over the years.  They patiently raise others’ children, and in so doing, these children know life outside the orphanage walls, and their communities begin to see their value rather than their disability.  

A foster mother holds a baby with heart disease.

Perhaps valor begins with humility, quietly imparting dignity to others, and teaching us what it means to love unconditionally in a world where it is tempting to put limits where God just doesn’t see any.

P.s.  J.R. Goudeau, whose blog I totally admire, featured this post over at Love is what you do: I’m so honored, and I hope you’ll check out J.R.’s blog and the great work she does on behalf of refugee women in the states.