Sometimes I almost forget Callie has SMA. Other times, I can think of nothing else. When she takes my earrings, puts them up to her own ears and grins, I wonder if she\u2019ll reach 13–the age I\u2019ve arbitrarily set as being old enough to get her ears pierced.<\/p>\n
I\u2019ve already accepted that she won\u2019t walk. And I don\u2019t mind that much. Some days, I feel certain that a treatment will be developed that can at least prolong her life. Other days, I think that\u2019s a fantasy.<\/p>\n
I look at Callie and can\u2019t imagine life without her–the way she dances by nodding her head or by wiggling like a worm if she\u2019s lying down; the way she shakes her head and says \u201cNo!\u201d when she sees Peter coming to take her toys; her rendition of \u201cWheels on the Bus.\u201d<\/p>\n
Early in her diagnosis, I wondered to a friend why we couldn\u2019t be a regular family–the people whose idea of a catastrophe is spilling coffee on their best suit. To which my friend replied, \u201cBut are they really the lucky ones?\u201d<\/p>\n
Not long after that, I was in the grocery store and saw a little girl about Callie\u2019s age. She had some of Callie\u2019s features and even had 3 older brothers like Callie does. I stood there, mesmerized. It was like visualizing a parallel universe in which everything that mattered in my life was fine. I watched her eat a cookie, turning this way and that.<\/p>\n
I thought of Callie, who rides in a baby seat at the store because she can\u2019t sit up in the cart for more than a few minutes. I noticed the girl\u2019s sandals; I knew she walked. I thought of Callie, unable to move her legs. I watched the girl and her family walk out of the store. I thought of Callie. And thought it was possible that I was the lucky one.<\/p>\n","protected":false},"excerpt":{"rendered":"
Sometimes I almost forget Callie has SMA. Other times, I can think of nothing else. When she takes my earrings, puts them up to her own ears and grins, I wonder if she\u2019ll reach 13–the age I\u2019ve arbitrarily set as being old enough to get her ears pierced. I\u2019ve already accepted that she won\u2019t walk. […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_s2mail":"","footnotes":""},"categories":[1],"tags":[],"class_list":["post-49","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts\/49","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/comments?post=49"}],"version-history":[{"count":2,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts\/49\/revisions"}],"predecessor-version":[{"id":51,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts\/49\/revisions\/51"}],"wp:attachment":[{"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/media?parent=49"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/categories?post=49"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/tags?post=49"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}