{"id":1,"date":"2012-02-28T21:05:35","date_gmt":"2012-02-29T02:05:35","guid":{"rendered":"http:\/\/blogs.bu.edu\/relwy\/2012\/02\/28\/hello-world\/"},"modified":"2012-11-02T20:21:59","modified_gmt":"2012-11-03T00:21:59","slug":"hello-world","status":"publish","type":"post","link":"https:\/\/blogs.bu.edu\/relwy\/2012\/02\/28\/hello-world\/","title":{"rendered":"Hello world!"},"content":{"rendered":"<p><a rel=\"attachment wp-att-19\" href=\"http:\/\/blogs.bu.edu\/relwy\/2012\/02\/28\/hello-world\/img_4112\/\"><img loading=\"lazy\" class=\"alignnone size-medium wp-image-19\" src=\"http:\/\/blogs.bu.edu\/relwy\/files\/2012\/02\/IMG_4112-300x225.jpg\" alt=\"Rani and Ben on a Thames River Cruise\" width=\"300\" height=\"225\" srcset=\"https:\/\/blogs.bu.edu\/relwy\/files\/2012\/02\/IMG_4112-300x225.jpg 300w, https:\/\/blogs.bu.edu\/relwy\/files\/2012\/02\/IMG_4112-1024x768.jpg 1024w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/a><\/p>\n<p>I&#8217;m on London time after a glorious week&#8217;s visit there, visiting old friends and nostalgic settings. I&#8217;m often awake at 4 am, thinking about the things I should be doing, but also about the things I really want to do. One thing that I&#8217;ve wanted to do was write a blog about our lives with my son&#8217;s extremely rare genetic condition.<\/p>\n<p><script type=\"text\/javascript\">\/\/ <![CDATA[\r\n (function(d, s, id) {   var js, fjs = d.getElementsByTagName(s)[0];   if (d.getElementById(id)) return;   js = d.createElement(s); js.id = id;   js.src = \"\/\/connect.facebook.net\/en_US\/all.js#xfbml=1\";   fjs.parentNode.insertBefore(js, fjs); }(document, 'script', 'facebook-jssdk'));\r\n\/\/ ]]><\/script><\/p>\n<div id=\"fb-root\"><\/div>\n<p><script>(function(d, s, id) {\r\n  var js, fjs = d.getElementsByTagName(s)[0];\r\n  if (d.getElementById(id)) return;\r\n  js = d.createElement(s); js.id = id;\r\n  js.src = \"\/\/connect.facebook.net\/en_US\/all.js#xfbml=1\";\r\n  fjs.parentNode.insertBefore(js, fjs);\r\n}(document, 'script', 'facebook-jssdk'));<\/script><\/p>\n<p>Ever since Ben was diagnosed with <a href=\"http:\/\/www.omim.org\/entry\/255800\" target=\"_blank\">Schwartz-Jampel syndrome <\/a>(SJS)\u00a0in 2003, I&#8217;ve shared my thoughts and feelings about access to health care, doctor-patient communication, shared decision-making and the ups and downs of family life with anyone who would listen, and often with those who didn&#8217;t want to listen.\u00a0 <a href=\"http:\/\/jama.ama-assn.org\/content\/297\/24\/2675.extract\" target=\"_blank\">Scholarly<\/a> and <a href=\"http:\/\/pediatrics.aappublications.org\/content\/117\/1\/218.full.pdf\" target=\"_blank\">commentary<\/a> articles have been published in peer-review journals, essays\u00a0 have been published in <a href=\"http:\/\/www.eparent.com\/\" target=\"_blank\">disability awareness magazines <\/a>and local <a href=\"http:\/\/www.wickedlocal.com\/wellesley\" target=\"_blank\">newspapers<\/a>, and a <a href=\"http:\/\/www.carepages.com\/carepages\/Benlegsurgery1\" target=\"_blank\">hospital-linked blog <\/a>has been maintained for over five years.<\/p>\n<p>But I&#8217;ve come to a new page in my parenting, and it is in this blog that I&#8217;ll express these new thoughts. I&#8217;ll talk about traveling with Ben&#8217;s wheelchair, walker and medical supplies; I&#8217;ll describe what it&#8217;s like to listen to patients&#8217; stories about their feelings of stigma when I know all too well what they are experiencing, yet I need to keep an objective distance; and I&#8217;ll mention the random acts of kindness that keep me and our family going on a daily basis.<\/p>\n<p>I hope that this blog will be helpful for the one or two families who have children with SJS who contact me every year to find out what I know about the condition&#8211;because, really, let&#8217;s face it, when 86 people in the world have this condition, not much is known. I also hope that this blog will reach the wider community of those with mobility and medical challenges who know that every outing has to be researched and examined in advance&#8211;spontaneity is not often the rule. And I hope that those without knowledge of these challenges will appreciate how I and others have learned so much from Ben and how he has braved every situation he has faced with more courage than hundreds of us could muster in a lifetime.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>I&#8217;m on London time after a glorious week&#8217;s visit there, visiting old friends and nostalgic settings. I&#8217;m often awake at 4 am, thinking about the things I should be doing, but also about the things I really want to do. One thing that I&#8217;ve wanted to do was write a blog about our lives with [&hellip;]<\/p>\n","protected":false},"author":2966,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[500,7588,11811,206],"tags":[7587],"_links":{"self":[{"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/posts\/1"}],"collection":[{"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/users\/2966"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/comments?post=1"}],"version-history":[{"count":32,"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/posts\/1\/revisions"}],"predecessor-version":[{"id":815,"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/posts\/1\/revisions\/815"}],"wp:attachment":[{"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/media?parent=1"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/categories?post=1"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/tags?post=1"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}