{"id":251,"date":"2010-08-06T18:38:00","date_gmt":"2010-08-06T18:38:00","guid":{"rendered":"https:\/\/dhr.tiltedchair.co\/2010\/08\/06\/life-its-own-self\/"},"modified":"2010-08-06T18:38:00","modified_gmt":"2010-08-06T18:38:00","slug":"life-its-own-self","status":"publish","type":"post","link":"https:\/\/dhr.tiltedchair.co\/?p=251","title":{"rendered":"Life Its Own Self"},"content":{"rendered":"<p>Once many years ago, when Kelly was a toddler, I was in conversation with a man from San Antonio, which has nothing to do with anything except that&#8217;s the only thing I remember about him, aside from what I here relate.<\/p>\n<p>When he learned my daughter had Down syndrome, he spoke of a family friend and his wife who&#8217;d had a baby with the condition.&nbsp; Then he said,&nbsp;&#8220;Fortunately, the child died young.&#8221;<\/p>\n<p>Time froze.&nbsp; My ears stopped hearing.&nbsp; <\/p>\n<p>My eyes were on&nbsp;Kelly as she&nbsp;sat on the carpet playing with a beam of late afternoon light&nbsp;that slanted&nbsp;through&nbsp;the&nbsp;window.<\/p>\n<div style=\"clear: both; text-align: center;\"><a href=\"http:\/\/1.bp.blogspot.com\/_Xp3XgAulJbI\/TFxVDNliEBI\/AAAAAAAAAbo\/xn_E9bBZypM\/s1600\/Kelly+with+sunbeam+004.jpg\" style=\"clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;\"><img decoding=\"async\" border=\"0\" bx=\"true\" src=\"http:\/\/1.bp.blogspot.com\/_Xp3XgAulJbI\/TFxVDNliEBI\/AAAAAAAAAbo\/xn_E9bBZypM\/s320\/Kelly+with+sunbeam+004.jpg\" \/><\/a><\/div>\n<p>Hand in, <br \/>hand out.<\/p>\n<p>Bright, <br \/>dark.&nbsp; <\/p>\n<p>Fingers open, <\/p>\n<p>fingers closed. <\/p>\n<p>I recall nothing more of the man&#8217;s visit, not who he was nor&nbsp;why he was in my living room, what I said, or how long he stayed.&nbsp; The curtain closes on that memory in deafened silence, with me staring&nbsp;at Kelly&#8217;s hand: <\/p>\n<p>Hand in, hand out.&nbsp; Bright, dark.&nbsp; Fingers open, fingers closed.&nbsp; <\/p>\n<p>Many years later, Jerry and I attended the funeral of a much-loved young woman who was among the first to come to Down Home Ranch.&nbsp; She didn&#8217;t have Down syndrome.&nbsp; She seemed healthy as a horse.<\/p>\n<p>Yet, unaccountably, one morning she died in bed shortly before dawn, and nobody ever knew why.&nbsp; She was 30 years old.<\/p>\n<p>At&nbsp;the funeral her dad was clearly heartbroken, but told us,&nbsp; &#8220;My one consolation is that she went before me.&nbsp; You know, that was my prayer for her, that she would always have me to look out for her and take care of her, so she&#8217;d have to go before me.&nbsp;&nbsp;And my prayer was answered.&#8221;<\/p>\n<p>Jerry and I understood what he meant (after all, Down Home Ranch is our attempt to keep on taking care of Kelly after we&#8217;re gone and we&#8217;d be lying if we said it wasn&#8217;t true) but our hearts were breaking for <em>us<\/em>.&nbsp; We loved this woman.&nbsp; She was one of a kind&#8211;loud, funny, opinionated&#8211;a true character, and we grieved the loss of her.&nbsp; There was no consolation for us in her death.<\/p>\n<p>But&nbsp;that&#8217;s the terrible path we walk&#8211;those of us with children who need us forever.&nbsp; <\/p>\n<p>Today Kelly flew off to&nbsp;Kansas with her boyfriend Sterling to visit&nbsp;her oldest sister&nbsp;Carolyn.&nbsp; They are quite the accomplished travelers, given a packing list and enough numbers programmed into their cell phones.&nbsp; Just to be on the safe side, since this is the first flight they&#8217;ve taken with a plane change on the way, we sent&nbsp; Casey, our Case Manager, as far as Dallas to conduct an on-site training&nbsp;in gate-changing in hopes that next time they&#8217;ll be able to navigate it by themselves.<\/p>\n<p>In Kansas they will stay up too late, and laugh and giggle most of the night, and Sterling will exchange mock insults and barbs with (future) brother-in-law Bryan, who calls him &#8220;Sterling-darling&#8221; to annoy him.&nbsp; They&#8217;ll go swimming, to a movie, eat at Five Guys, and help a little with the farm chores (but probably not much).<\/p>\n<p>In a hundred years, we&#8217;ll all be gone.<\/p>\n<table align=\"center\" cellpadding=\"0\" cellspacing=\"0\" style=\"margin-left: auto; margin-right: auto; text-align: center;\">\n<tbody>\n<tr>\n<td style=\"text-align: center;\"><a href=\"http:\/\/3.bp.blogspot.com\/_Xp3XgAulJbI\/TFxVytGmOXI\/AAAAAAAAAbw\/xG4P2BEJswU\/s1600\/Kelly+with+bubbles.jpg\" style=\"margin-left: auto; margin-right: auto;\"><img decoding=\"async\" border=\"0\" bx=\"true\" src=\"http:\/\/3.bp.blogspot.com\/_Xp3XgAulJbI\/TFxVytGmOXI\/AAAAAAAAAbw\/xG4P2BEJswU\/s320\/Kelly+with+bubbles.jpg\" \/><\/a><\/td>\n<\/tr>\n<tr>\n<td style=\"text-align: center;\"><em>Kelly&nbsp;is enchanted by bubbles<\/em><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n<p>But Lord, while we&#8217;re here,&nbsp;lead us in the&nbsp;dance.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Once many years ago, when Kelly was a toddler, I was in conversation with a man from San Antonio, which has nothing to do with anything except that&#8217;s the only thing I remember about him, aside from what I here relate. When he learned my daughter had Down syndrome, he spoke of a family friend&hellip;<\/p>\n","protected":false},"author":7,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[185,13,8,154,183,9],"tags":[],"class_list":["post-251","post","type-post","status-publish","format-standard","hentry","category-coping-skills","category-down-home-ranch","category-down-syndrome","category-family-life-with-child-with-special-needs","category-grief","category-right-to-life"],"_links":{"self":[{"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=\/wp\/v2\/posts\/251","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=\/wp\/v2\/users\/7"}],"replies":[{"embeddable":true,"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=251"}],"version-history":[{"count":0,"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=\/wp\/v2\/posts\/251\/revisions"}],"wp:attachment":[{"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=251"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=251"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=251"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}