{"id":64,"date":"2023-03-25T21:26:51","date_gmt":"2023-03-25T21:26:51","guid":{"rendered":"https:\/\/prrf.org\/2023-3-20-stumble-a-mile-in-our-shoes\/"},"modified":"2025-03-16T23:45:19","modified_gmt":"2025-03-16T23:45:19","slug":"2023-3-20-stumble-a-mile-in-our-shoes","status":"publish","type":"post","link":"https:\/\/prrf.org\/pt\/2023-3-20-stumble-a-mile-in-our-shoes\/","title":{"rendered":"Trope\u00e7ar uma milha nos nossos sapatos"},"content":{"rendered":"
\n

By Stephanie Brennell<\/em><\/p>\n

I had a mountain of laundry to fold the other day; it just kept piling up higher and higher.\u00a0 I needed to sit down and make a grocery list, and then actually make a trip to the store.\u00a0 I meant to take the dog for a walk.\u00a0 I meant to take myself for a walk.\u00a0 I had medical appointments to schedule, floors to clean, and closets to organize.\u00a0 Instead, I found myself sitting with my third cup of coffee reading through a document over 260 pages long containing proposed Medicaid policy changes.\u00a0 It was 261 pages, to be exact.\u00a0 The document was incredibly long and incredibly dull.\u00a0 Combing through it was a task less enjoyable than anything I have done in recent memory.\u00a0 But poring over a 261-page document so you can submit public comments on nonsensical proposed policy changes that have the potential to impact the care and well-being of your child is just par for the course in the world of special-needs parenting.<\/p>\n

Our eight-year-old son, Sean, was born with Norrie Disease \u2013 a rare genetic condition presenting with detached retinas at birth or shortly thereafter.\u00a0 In addition to navigating his world blind, Sean is autistic, non-verbal, and developmentally delayed.\u00a0 He is also the biggest ray of sunshine we have ever felt shining down on us.\u00a0 We have two other boys; Sean\u2019s twin brother Zach, and our ten-year-old son Will.\u00a0 Our lives revolve around all three of our amazing boys, but Sean obviously requires much more support than his brothers.\u00a0 The hoops and hurdles are endless; if it\u2019s not reviewing 261 pages of Medicaid policy, it\u2019s reviewing IEPs and progress reports for school, it\u2019s meeting routinely with a Medicaid Service Facilitator and a Medicaid Care Coordinator (which sound like the exact same role but are two different people from two different agencies), it\u2019s scheduling medical appointment after medical appointment, it\u2019s ensuring our supply of pull-ups gets approved and shipped by the medical supply company, it’s trying to determine which services and appointments are covered by our primary insurance company and which are covered by Medicaid, \u00a0it\u2019s taking on the role of employer for Sean\u2019s personal care attendants, it\u2019s one thing after another\u2026and it\u2019s never-ending.<\/p>\n

Not only will the workload never end, but it will also increase greatly as Sean gets older.\u00a0 The amount of research and planning for his future will be daunting.\u00a0 We need to ensure Sean\u2019s financial security, along with caregiving and housing arrangements if the time comes when we are no longer physically able to care for him.\u00a0Will and Zach will be off to college, and then on to start their careers and their families.\u00a0 We are on borrowed time with them, as most parents are with their children.\u00a0 But Sean\u2019s future will look much different.\u00a0 And that\u2019s okay.\u00a0 We want him to lead a happy and fulfilling life, on his terms.<\/p>\n

I\u2019ve had so many friends and family members tell me over the years they don\u2019t know how we do it.\u00a0 They can\u2019t imagine what it\u2019s like to walk a mile in our shoes.\u00a0 To juggle everything that we toss into the air.\u00a0 To raise a child like Sean.\u00a0 I tell them that we were never given a choice.\u00a0 But if we had been, I would choose Sean all over again, exactly as he is.\u00a0 Because even though we are mostly stumbling and tripping along down the road instead of walking, we are still making forward progress.\u00a0 And what more could we hope for?<\/p>\n

_<\/p>\n

About the author:<\/p>\n

Stephanie Brennell is a parent and PRRF FAC Member<\/em><\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"

We were never given a choice, but if we had been, I would choose Sean all over again, exactly as he is.  Because even though we are mostly stumbling and tripping along down the road instead of walking, we are still making forward progress. <\/p>","protected":false},"author":10,"featured_media":6426,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_coblocks_attr":"","_coblocks_dimensions":"","_coblocks_responsive_height":"","_coblocks_accordion_ie_support":"","om_disable_all_campaigns":false,"footnotes":""},"categories":[36,46,45],"tags":[29],"class_list":{"0":"post-64","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-blog","8":"category-parent-stories","9":"category-personal-stories","10":"tag-norrie-disease"},"_links":{"self":[{"href":"https:\/\/prrf.org\/pt\/wp-json\/wp\/v2\/posts\/64","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/prrf.org\/pt\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/prrf.org\/pt\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/prrf.org\/pt\/wp-json\/wp\/v2\/users\/10"}],"replies":[{"embeddable":true,"href":"https:\/\/prrf.org\/pt\/wp-json\/wp\/v2\/comments?post=64"}],"version-history":[{"count":4,"href":"https:\/\/prrf.org\/pt\/wp-json\/wp\/v2\/posts\/64\/revisions"}],"predecessor-version":[{"id":7988,"href":"https:\/\/prrf.org\/pt\/wp-json\/wp\/v2\/posts\/64\/revisions\/7988"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/prrf.org\/pt\/wp-json\/wp\/v2\/media\/6426"}],"wp:attachment":[{"href":"https:\/\/prrf.org\/pt\/wp-json\/wp\/v2\/media?parent=64"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/prrf.org\/pt\/wp-json\/wp\/v2\/categories?post=64"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/prrf.org\/pt\/wp-json\/wp\/v2\/tags?post=64"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}