Thursday, December 5, 2013

How We Do It, Part XXXVIII in a series



How does something as outrageous as the above succulent exist, there in the dirt by the sidewalk on my street?

I ran into an old friend at Trader Joe's yesterday, the mother of one of Sophie's classmates, a young woman with multiple disabilities who has been in school with Sophie for fifteen years. My friend is an Orthodox Jew and lives not too far from me, but we run in different circles and it's only rarely that I speak with her. Yesterday, when we literally bumped our carts together, we both exclaimed how happy we were to do so. We threw our arms around each other and smiled. She wears the traditional garb of the Orthodox, a long skirt, sensible shoes, a nondescript blouse. Her hair is obviously covered by a wig. I was in jeans and a long-sleeved tee-shirt, clogs, my hair twisted up with a clip. I asked her how her ten (yes, TEN) kids were, and she said, They're good, thank God, thank God. She smiled and I smiled. Later in the conversation, I might have said the word hell, but I quickly apologized and she laughed. She told me how happy I made her. We shared stories of our girls, we talked about pads for soaked sheets (the bane, for both of us, of our existence -- the changing of the sheets). My friend has a dark sense of humor. She is one of my people. We ventured down the dreaded road of What Is Going to Happen After High School. (neither of us has any idea). She shared with me the pressure she feels from friends, even from family, to put her daughter in a home, give her away. I nodded my head. I understand. They want me to have what they call a normal life, my friend said. Ha! I replied. She is my life, my friend said. I nodded my head. We laughed at these friends, wondered why they didn't just pitch in and literally help. Change the sheets one morning! I shared with her how even a therapist I know told me a story of a couple who put their child with Down Syndrome into residential care when he was a baby, certain that that action had saved their marriage and subsequent children. We looked into each other's eyes and I imagine saw similar darkness and light. I would never judge anyone for choosing to do that, I told my friend, but I imagine it's harder than THEY say. We both agreed that we'd as soon shut down, cut out a piece of our hearts, be numb and dead to the world we know than make that decision. We talked for a bit more, hugged again and said good-bye.

Sophie's outrageous existence has brought me these outsider friendships with women and men that I would never have encountered otherwise. There's something beautiful and terrible in the symmetry of our lives, order and chaos, sharp and fluid, damaged and graced.

15 comments:

  1. It is if you experience all of life, boiled down to a reduction that most of us will never know the taste of.
    Not really.
    I am glad you know others who do know the taste of that experience. You are not alone.

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  2. I would totally come change the sheets. I would. I love that your life contains these simultaneous patches of light and dark, the shadows and brilliant sunlight, moving through warmth and cool again and again.

    Love.

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  3. I have a group of special mom friends, the few of us get together when we can. And we have each changed the sheets and cleaned up the bodily spills, and fed through gtube, and rearranged tubes and wires in hospital rooms. I know how very special it is. I would change the sheets with you.

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  4. Most folks who have never cared for someone, taken care of them intimately, day after day, don't know the hidden gems of doing so. It is hard work, but often grace shines through and reminds us that we would rather do this work than most anything else. Our loved ones are worth it. We know this.

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  5. Sometimes I have no words, just the powerful humility and awe you stir in me. Wow.

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  6. How wonderful that the world provided you with such a moment of respite in … of all places… Trader Joes. Women and mothers, in particular, amaze me.

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  7. Third attempt to leave this comment! Maybe it's not meant to be left! Okay, here goes: I can vouch for Kario, she would change the sheets. I would, too. I would also take you out for drinks on a regular basis and make you laugh your ass off.

    I think about the decision some make to put their children in homes, you captured it well in this post. We know a family who placed their developmentally disabled son in a home 50 years ago. I watch as the many siblings and grandchildren all strive for perfection, over-achievement, and wonder just how far the ripples will go, from that one decision.

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  8. This one really opened my eyes. My heart, surprised, said--oh, I see. This is how they do it. You and all the extreme parents have gone so deep into the well.

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  9. It's wholeness...not the kind of wholeness sold by Madison Avenue, but the wholeness of human existence. I can see the viewpoint of those who offer advice as kindly and well-meaning, but they are not walking in your clogs, or in your friend's sensible shoes; how can they possibly understand? Our children -all of them - are not problems to solve, or to be put aside, but complex individuals who have full worth just as they are, and are woven into the fabric of who we are. YOU know.

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  10. What connects each of us to other people is never what we set out at the start of the day believing it would be. Your openness is a gift E. You are a walking around arms outstretched human. Thank you for touching my life too. I believe we would buy plane tickets for the joy of changing sheets if it came down to it.

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  11. i'm grateful for those friends of yours. i remember that during the years i spent in and our of ER and intensive care with Rebecca, there was no one i could speak to outside of the hospital, and that the daily practice of washing my hands, wear all the various disposable sterile pieces, was a ritual i welcomed to transition from life outside to life inside intensive care.

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