{"id":339,"date":"2010-08-19T08:29:43","date_gmt":"2010-08-19T08:29:43","guid":{"rendered":"http:\/\/blog.beliefnet.com\/thinplaces\/2010\/08\/remembering-that-our-daughter-has-down-syndrome.html"},"modified":"2010-08-19T08:29:43","modified_gmt":"2010-08-19T08:29:43","slug":"remembering-that-our-daughter-has-down-syndrome","status":"publish","type":"post","link":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/2010\/08\/remembering-that-our-daughter-has-down-syndrome.html","title":{"rendered":"Remembering That Our Daughter Has Down Syndrome"},"content":{"rendered":"


\n\"IMG_5151.JPG\"<\/a><\/span><\/p>\n

Sometimes I forget about Penny’s extra chromosome. A lot of
\nthe time, actually. When we’re with my family. When she’s being William’s bossy
\nolder sister. When she and I are cuddling on the bed and she asks me to tell
\nher stories.<\/p>\n

But then it comes up. Take yesterday, when we were at the
\nbeach with a bunch of other kids and Penny just couldn’t quite keep up. She tried
\nher best for a while–running, jumping, making “sand angels”–but she ended up by
\nmy side, with another little girl’s flip flops on her feet (she’s obsessed with
\nother people’s flip flops at the moment). I noticed that extra chromosome
\nagain, in that same outing, when two people walked into our view. She noticed
\nthe woman in the wheelchair instead of the little boy with the popsicle. The
\nother kids around us only had eyes for the orange sweetness that dribbled down
\nhis chin. <\/p>\n

And again last night. She was crying in her sleep. I could
\nonly guess why–a nightmare? A stomachache? I rubbed her back and came close to
\nshedding tears of my own. It was one of those moments when I was reminded that
\nher life will carry with it hardships. That she struggles to learn how to swim
\nand do buttons. That simple tasks, like writing her name, tire her out. That
\nother people have trouble understanding her speech, even her mom and dad
\nsometimes. (In a characteristically generous moment, Penny clapped for us
\nyesterday when we understood what she had been trying to tell us for, oh, three
\nor four days running. “A frensher” was what Peter and I heard. I finally
\nfigured it out: “adventure.”)<\/p>\n

I could say that yesterday I was reminded of Penny’s
\ndisability. But I continue to bristle at that word. Penny is not like a car on
\nthe side of the road that needs a mechanic before she can keep going. She just
\nhas to work harder to get to her destination. So the word I am thinking about
\ntoday is vulnerable<\/i>. The dictionary
\ndefines it as “capable of being physically or emotionally wounded” or “open to
\nattack or damage.” And those things are true. But I think vulnerability moves
\nin another direction as well. Penny is open to wounds, yes, but she is also
\nopen to joy, to relationships, to love. I can’t do as much as I would like to
\nprotect her from the hurt she will experience in her life. But I can sit with
\nher when the other kids are running around, rub her back when she cries, and I
\ncan be grateful for the look of concern in her eyes when she sees someone in
\nneed. Her vulnerability isn’t easy, but it is a gift. <\/p>\n

<\/p>\n","protected":false},"excerpt":{"rendered":"

Sometimes I forget about Penny’s extra chromosome. A lot of the time, actually. When we’re with my family. When she’s being William’s bossy older sister. When she and I are cuddling on the bed and she asks me to tell her stories. But then it comes up. Take yesterday, when we were at the beach…<\/p>\n","protected":false},"author":88,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7,1,6],"tags":[],"class_list":["post-339","post","type-post","status-publish","format-standard","hentry","category-disability","category-down-syndrome","category-family"],"yoast_head":"\nRemembering That Our Daughter Has Down Syndrome - Thin Places<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/2010\/08\/remembering-that-our-daughter-has-down-syndrome.html\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Remembering That Our Daughter Has Down Syndrome - Thin Places\" \/>\n<meta property=\"og:description\" content=\"Sometimes I forget about Penny’s extra chromosome. A lot of the time, actually. When we’re with my family. When she’s being William’s bossy older sister. When she and I are cuddling on the bed and she asks me to tell her stories. But then it comes up. 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Two major life experiences have shaped her writing and her faith\u00e2\u20ac\u201dcaring for her mother-in-law as she battled cancer and welcoming her daughter Penny into the world after she was diagnosed at birth with Down syndrome. Both experiences expanded and enriched her understanding of what it means to be human and to receive each and every person as a gift.\u00c2\u00a0 A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, and the forthcoming A Good and Perfect Gift (Bethany House). Her essays have appeared in First Things, The Philadelphia Inquirer, The Christian Century, ChristianityToday.com, and Bloom, among other online venues.","sameAs":["http:\/\/amyjuliabecker.com"],"url":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/author\/amyjuliabecker"}]}},"_links":{"self":[{"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/posts\/339","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/users\/88"}],"replies":[{"embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/comments?post=339"}],"version-history":[{"count":0,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/posts\/339\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/media?parent=339"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/categories?post=339"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/tags?post=339"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}