{"id":22,"date":"2010-05-11T08:36:00","date_gmt":"2010-05-11T08:36:00","guid":{"rendered":"http:\/\/blog.beliefnet.com\/thinplaces\/2010\/05\/burdens-and-blessings.html"},"modified":"2010-05-11T08:36:00","modified_gmt":"2010-05-11T08:36:00","slug":"burdens-and-blessings","status":"publish","type":"post","link":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/2010\/05\/burdens-and-blessings.html","title":{"rendered":"Burdens and Blessings"},"content":{"rendered":"

\"\"<\/a>
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I have a new post at BLOOM: Parenting Children with Disabilities<\/a>. <\/div>\n
<\/div>\n
I’m printing it here in full, although I also encourage you to click over to BLOOM when you’re done reading and scroll through the content there. Anyway, here’s the post, which should make sense of the photo, taken when Penny was in the Emergency Room at thirteen-months old: <\/div>\n
<\/div>\n
\u201cPenny\u2019s tough.\u201d<\/div>\n

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He said it because he wanted to support us. Peter and I were on vacation with close friends, and we had asked for parenting advice. That week, Penny just hadn\u2019t been able to keep her \u201clistening ears\u201d on. She hadn\u2019t \u201ccontrolled her hands.\u201d She wriggled and squirmed and ran away. She dumped milk on the counter. She refused to use the potty. She even pulled our friends\u2019 daughter\u2019s hair. So with the kids in bed, we were sitting at dinner bemoaning our lot as parents, wondering what we were doing wrong.<\/div>\n

<\/p>\n

So when our friend said, \u201cPenny\u2019s tough,\u201d he meant it as a consolation. He was encouraging us: We were doing our best. We shouldn\u2019t be beating ourselves up. But I felt a little sick hearing those two words uttered from the mouth of the parent of three typically-developing children. I felt as though I had betrayed Penny, even as though I had betrayed kids with special needs in general.<\/div>\n

<\/p>\n

Most of what I say to friends or write about, when it comes to Penny in particular and Down syndrome in general, is positive. Genuinely positive. When I hear that a baby has been born with Down syndrome, my gut reaction is, \u201cCongratulations!\u201d I want to get the word out that children with special needs really are special, as in, valuable, and deserving our attention and resources and care. That\u2019s why we participate in a program through a local medical school and have doctors-in-training over for dinner. That\u2019s why I write about the love and laughter in our family. I want to promote an ethic of inclusion. I want the rest of the world to know the goodness, the blessing, the joy, of welcoming children as they are given to us.<\/div>\n

<\/p>\n

But all my positive stories and genuine joy in our child sometimes means I have a hard time talking about the hard stuff. I have a hard time admitting that life with a child with special needs can, indeed, be tough. That potty-training has taken two years and counting. That I wish I didn\u2019t know the route to the Children\u2019s Hospital of Philadelphia by heart. That there was a night last spring when Penny could have died of dehydration from a stomach bug. That I hear people making comments about where their children will go to school or who they will marry or even how many grandkids they will have, and I sometimes feel sad, not knowing what possibilities are out there for our daughter. If I talk about those thoughts and experiences and feelings, I\u2019m afraid I will only perpetuate an impression that children with Down syndrome (and other disabilities) are burdens. Or that somehow, Penny\u2019s existence is less than complete. That somehow, it is sad that she has Down syndrome. Or sad that she is our daughter.<\/div>\n

<\/p>\n

I read a few years back that there’s a difference between pity and compassion. When people take pity, it\u2019s a distancing mechanism. It\u2019s looking in from the outside and saying (whether by word or action): \u201cI\u2019m sorry for what you\u2019re going through, and I\u2019m so glad that I\u2019m not you.\u201d But compassion, a word whose root means \u201cto suffer with,\u201d is looking in from the outside and saying, \u201cI\u2019m sorry for what you\u2019re going through. How can I enter into this hard place with you?\u201d I don\u2019t want people\u2019s pity, and yet I wonder how often I have, in trying to avoid pity, instead closed myself off to compassion.<\/div>\n

<\/p>\n

We had a medical school student over for dinner last week. He spent 30 minutes alone with Penny. I could hear her giggling and instructing him \u201cHelp me draw a playground!\u201d and showing him how she wrote her name and reading books to him.<\/div>\n

<\/p>\n

\u201cHow do you think it will impact William to have a sister with Down syndrome?\u201d the student asked me, after she had gone to bed.<\/div>\n

<\/p>\n

I talked for a while about the blessing I thought Penny\u2019s life would be for him, how she would show him that character counts more than achievement, that value in life comes from who we are not what we do. The med student then asked, \u201cHas it been harder having a child with special needs than a typically-developing child?\u201d<\/div>\n

<\/p>\n

I took the risk. \u201cWell, yes and no. William cried for the first six months of his life, whereas Penny slept through the night at seven weeks. But with Penny, we did have therapy four times a week for about a year, and there are more doctors\u2019 visits, and I do find myself worrying about whether she will have friends when she gets older.\u201d As soon as I said it, I wondered, again, if I had betrayed her.<\/div>\n

<\/p>\n

But he responded, \u201cYou know, I look around your house, and having spent time with your kids, I think this is a life I could aspire to. And I mean all of it, including having a child with a disability. Somehow it seems to make your life even better.\u201d<\/div>\n

<\/p>\n

He\u2019s right. Somehow the hard stuff and the joy are related to each other, and together they are leading us more and more into a life of gratitude. Talking with honesty about it all doesn\u2019t betray Penny, any more than it betrays colicky babies to talk about William\u2019s first few months of life. And although I think parents of children with special needs do experience struggles of a more intense nature than most parents of typically-developing kids, all parents need a safe place to admit the stuff that\u2019s been hard lately. So I\u2019m going to try to create that space, to talk about the burdens and the blessings of our life. To trust in the compassion of our friends and family. To trust that what\u2019s ‘hard’ is part of life, and a part of love.<\/div>\n
<\/div>\n
Again, please visit BLOOM<\/a> for more posts and stories, particularly for parents of children with disabilities.<\/div>\n

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

I have a new post at BLOOM: Parenting Children with Disabilities. I’m printing it here in full, although I also encourage you to click over to BLOOM when you’re done reading and scroll through the content there. Anyway, here’s the post, which should make sense of the photo, taken when Penny was in the Emergency…<\/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],"tags":[],"class_list":["post-22","post","type-post","status-publish","format-standard","hentry","category-disability","category-down-syndrome"],"yoast_head":"\nBurdens and Blessings - 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\/05\/burdens-and-blessings.html\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Burdens and Blessings - Thin Places\" \/>\n<meta property=\"og:description\" content=\"I have a new post at BLOOM: Parenting Children with Disabilities. 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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\/22","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=22"}],"version-history":[{"count":0,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/posts\/22\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/media?parent=22"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/categories?post=22"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.beliefnet.com\/columnists\/thinplaces\/wp-json\/wp\/v2\/tags?post=22"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}