{"id":18,"date":"2018-05-21T10:25:29","date_gmt":"2018-05-21T10:25:29","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2018\/05\/21\/2018-5-21-blessings\/"},"modified":"2025-10-14T06:58:39","modified_gmt":"2025-10-14T06:58:39","slug":"2018-5-21-bendiciones","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2018\/05\/21\/2018-5-21-blessings\/","title":{"rendered":"Bendiciones"},"content":{"rendered":"<div class=\"sqs-html-content\">\n<p>Hoy hace tres a\u00f1os que la vida de mi hijo Alex cambi\u00f3. En cuesti\u00f3n de 24 horas, su vida dio un giro radical y pas\u00f3 de ser el t\u00edpico ni\u00f1o de 4 a\u00f1os que hac\u00eda cosas t\u00edpicas de un ni\u00f1o de 4 a\u00f1os a un ni\u00f1o que se enfrentar\u00eda a toda una vida de retos m\u00e9dicos, emocionales y f\u00edsicos. Esta misma ma\u00f1ana de hace tres a\u00f1os nos levantamos como siempre, como siempre, pero con un peque\u00f1o signo revelador que le llev\u00f3 a una resonancia magn\u00e9tica horas m\u00e1s tarde y a una operaci\u00f3n cerebral urgente al d\u00eda siguiente.<\/p>\n<p>En aquel momento, hace tres a\u00f1os, ni siquiera sab\u00eda deletrear la palabra craneofaringioma y nunca hab\u00eda pensado demasiado en los tumores cerebrales. Pero all\u00ed estaba, rezando en la sala de espera del Johns Hopkins, con la esperanza de que sobreviviera. Y en mi cabeza pensaba que, si sobreviv\u00eda, todo volver\u00eda a la normalidad. La segunda noche en la UCI pedi\u00e1trica del Johns Hopkins, descubr\u00ed c\u00f3mo se deletrea craneofaringioma. Lo introduje en Google y esas esperanzas de volver a la normalidad se disolvieron en una lista de t\u00e9rminos aterradores o, como ahora s\u00e9, conocidos como comorbilidades: diabetes ins\u00edpida, panhipopituitarismo, insuficiencia suprarrenal, p\u00e9rdida de memoria, obesidad m\u00f3rbida, hipotiroidismo, disfunci\u00f3n cognitiva, desregulaci\u00f3n de la temperatura, infertilidad, problemas de visi\u00f3n y la lista contin\u00faa.<\/p>\n<p>Si bien seguimos teniendo dificultades, \u00faltimamente su recuperaci\u00f3n ha sido buena. Es un proceso lento de progresi\u00f3n y regresi\u00f3n, pero nos centramos en el progreso y no en la perfecci\u00f3n. Nos ha costado cada d\u00eda de estos \u00faltimos tres a\u00f1os. Todos. Cada. D\u00eda.<\/p>\n<p>Hace poco, mientras hac\u00eda el cambio de ropa de invierno a verano, me tropec\u00e9 con un peque\u00f1o recuerdo de nuestra estancia en Hopkins hace tres veranos. Despu\u00e9s de una de las muchas resonancias magn\u00e9ticas de Alex, un t\u00e9cnico me pregunt\u00f3 si quer\u00eda darle un premio de la caja de los tesoros. Alex durmi\u00f3 durante la mayor parte de su experiencia all\u00ed, as\u00ed que no tuvo realmente la oportunidad de hacer una selecci\u00f3n. Saqu\u00e9 este monedero hortera y me re\u00ed pensando que a Alex no le importar\u00eda que yo me comprara un accesorio nuevo. Nos decidimos por algo que le gustara m\u00e1s, como unas pegatinas o un personaje de la Patrulla Canina. Un rato despu\u00e9s, una enfermera se detuvo en nuestra habitaci\u00f3n con el bolso y una nota del t\u00e9cnico \"este bolso es para mam\u00e1:)\". Recuerdo que me hizo sonre\u00edr y lo he guardado junto con la nota como recordatorio de c\u00f3mo incluso los m\u00e1s peque\u00f1os gestos de amabilidad de extra\u00f1os, nuestra comunidad, amigos y familiares han hecho este viaje mucho m\u00e1s llevadero.<\/p>\n<\/div>\n<div class=\"image-block-outer-wrapper          layout-caption-below          design-layout-inline\" data-test=\"image-block-inline-outer-wrapper\"><\/p>\n<figure class=\"sqs-block-image-figure              intrinsic\" style=\"max-width: 500px;\"><\/p>\n<div class=\"image-block-wrapper\" data-animation-role=\"image\" data-animation-override=\"\">\n<div class=\"sqs-image-shape-container-element              has-aspect-ratio\" style=\"position: relative; padding-bottom: 160%; overflow: hidden; -webkit-mask-image: -webkit-radial-gradient(white, black);\"><\/p>\n<p><noscript><img decoding=\"async\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1526897968955-I2T9EGHF32OKHSA448QK\/purse.jpg\" alt=\"monedero.jpg\" \/><\/noscript><img decoding=\"async\" class=\"thumb-image\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1526897968955-I2T9EGHF32OKHSA448QK\/purse.jpg\" alt=\"monedero.jpg\" data-image=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1526897968955-I2T9EGHF32OKHSA448QK\/purse.jpg\" data-image-dimensions=\"500x800\" data-image-focal-point=\"0.5,0.5\" data-load=\"false\" data-image-id=\"5b029d300e2e7216afdddc58\" data-type=\"image\" \/><\/p>\n<\/div>\n<\/div>\n<\/figure>\n<\/div>\n<div class=\"sqs-html-content\">\n<p>Hoy, cuando se cumplen tres a\u00f1os del diagn\u00f3stico de Alex, abrimos las puertas de la exposici\u00f3n de arte virtual de la Fundaci\u00f3n Raymond A. Wood. <a href=\"http:\/\/www.artofsurviving.net\">El arte de sobrevivir<\/a>. Estamos encantados con la respuesta de los supervivientes de tumores cerebrales de todo el mundo. T\u00f3mese su tiempo esta semana para visitar y ver las bellas expresiones de los supervivientes, desde pinturas a esculturas y canciones. Le prometo que encontrar\u00e1 inspiraci\u00f3n. No deje de votar sus obras favoritas, leer las historias de los supervivientes y compartir este proyecto con sus amigos. Tu apoyo a este proyecto es el monedero hortera y la nota adhesiva: un recordatorio permanente de que, a pesar de lo que pueda parecer tr\u00e1gico, surgen bendiciones.<\/p>\n<p>Ma\u00f1ana Alex cumplir\u00e1 tres a\u00f1os sin tumores. Esperamos que siga mejorando, pero este d\u00eda siempre nos recuerda c\u00f3mo cambiaron las cosas para \u00e9l y para nuestra familia. Tambi\u00e9n es una celebraci\u00f3n de lo lejos que hemos llegado y de lo hermoso que ha sido sobrevivir.<\/p>\n<p>No olvide visitar la p\u00e1gina <a href=\"http:\/\/www.artofsurviving.net\" target=\"_blank\" rel=\"noopener\">El arte de sobrevivir<\/a> o <a href=\"https:\/\/www.rawoodfoundation.org\/es\/hacer-un-donativo\/\">haga una donaci\u00f3n para apoyar nuestros esfuerzos<\/a> para ofrecer iniciativas de calidad de vida a los supervivientes de tumores cerebrales pedi\u00e1tricos.<\/p>\n<\/div>\n<div class=\"image-block-outer-wrapper          layout-caption-below          design-layout-inline\" data-test=\"image-block-inline-outer-wrapper\"><\/p>\n<figure class=\"sqs-block-image-figure              intrinsic\" style=\"max-width: 2000px;\"><span class=\"sr-only\">M\u00e1s informaci\u00f3n<\/span><\/p>\n<div class=\"image-block-wrapper\" data-animation-role=\"image\" data-animation-override=\"\">\n<div class=\"sqs-image-shape-container-element              has-aspect-ratio\" style=\"position: relative; padding-bottom: 60.000003814697266%; overflow: hidden; -webkit-mask-image: -webkit-radial-gradient(white, black);\"><\/p>\n<p><noscript><img decoding=\"async\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1526898064988-UYI1YT5QIFZ2PWZ4YW1A\/banner2.jpg\" alt=\"banner2.jpg\" \/><\/noscript><img decoding=\"async\" class=\"thumb-image\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1526898064988-UYI1YT5QIFZ2PWZ4YW1A\/banner2.jpg\" alt=\"banner2.jpg\" data-image=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1526898064988-UYI1YT5QIFZ2PWZ4YW1A\/banner2.jpg\" data-image-dimensions=\"2000x1200\" data-image-focal-point=\"0.5,0.5\" data-load=\"false\" data-image-id=\"5b029d8e562fa7b754f030bf\" data-type=\"image\" \/><\/p>\n<\/div>\n<\/div>\n<\/figure>\n<\/div>","protected":false},"excerpt":{"rendered":"<p style=\"white-space: pre-wrap;\">Hoy hace tres a\u00f1os que la vida de mi hijo Alex cambi\u00f3. En cuesti\u00f3n de 24 horas, su vida dio un giro radical y pas\u00f3 de ser el t\u00edpico ni\u00f1o de 4 a\u00f1os que hac\u00eda cosas t\u00edpicas de un ni\u00f1o de 4 a\u00f1os a un ni\u00f1o que se enfrentar\u00eda a toda una vida de retos m\u00e9dicos, emocionales y f\u00edsicos. Esta misma ma\u00f1ana de hace tres a\u00f1os nos levantamos como siempre, como siempre, pero con un peque\u00f1o signo revelador que le llev\u00f3 a una resonancia magn\u00e9tica horas m\u00e1s tarde y a una operaci\u00f3n cerebral urgente al d\u00eda siguiente.<\/p>","protected":false},"author":4,"featured_media":19,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[36,1],"tags":[],"class_list":["post-18","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-caregivers","category-uncategorized","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Blessings - Raymond A. Wood Foundation<\/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.rawoodfoundation.org\/es\/2018\/05\/21\/2018-5-21-bendiciones\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Blessings - Raymond A. Wood Foundation\" \/>\n<meta property=\"og:description\" content=\"Three years ago today life changed for my son, Alex. In a matter of 24 hours, his life journey took a major turn from being a typical 4-year-old boy doing typical 4-year old boy things to a child that would face of lifetime of medical, emotional and physical challenges. 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