{"id":28553,"date":"2023-02-24T06:00:00","date_gmt":"2023-02-24T05:00:00","guid":{"rendered":"https:\/\/omnesmag.com\/?p=28553"},"modified":"2023-02-07T12:36:26","modified_gmt":"2023-02-07T11:36:26","slug":"god-gave-me-a-new-day-with-nacho","status":"publish","type":"post","link":"https:\/\/www.omnesmag.com\/pl\/actualidad\/experiencias\/dios-me-regalaba-un-nuevo-dia-con-nacho\/","title":{"rendered":"Matka <em>bohater bez peleryny: <\/em>\"B\u00f3g da\u0142 mi nowy dzie\u0144 z Nacho i ca\u0142\u0105 moj\u0105 rodzin\u0105\"."},"content":{"rendered":"<p class=\"wp-block-paragraph\">Maria od osiemnastu lat jest \u017con\u0105 Jaime'a i ma czworo dzieci:<em> \"Dw\u00f3ch na ziemi i dw\u00f3ch w niebie\",<\/em> zauwa\u017ca z dum\u0105. Wielki skarb, Nacho, pojawi\u0142 si\u0119 w 2016 roku. Zaraz po urodzeniu dosz\u0142o u niego do zatrzymania kr\u0105\u017cenia, co zapocz\u0105tkowa\u0142o pielgrzymk\u0119 po szpitalach, a\u017c znale\u017ali diagnoz\u0119: zesp\u00f3\u0142 Ondyny, choroba powoduj\u0105ca niewydolno\u015b\u0107 autonomicznego uk\u0142adu nerwowego. Najbardziej problematyczne jest to, \u017ce dzieci te przestaj\u0105 oddycha\u0107 podczas snu. Zrobiono jej tracheotomi\u0119 i jej \u017cycie sta\u0142o si\u0119 zale\u017cne od respiratora. Maria wspomina, \u017ce wr\u00f3cili do domu<em> \"z prawdziwym mobilnym OIT do domu: dwa respiratory, dwa aspiratory tracheostomijne, butla z tlenem i inne urz\u0105dzenia\".<\/em>. Wspomina, \u017ce pierwsze miesi\u0105ce by\u0142y bardzo trudne: \"Pierwsze miesi\u0105ce by\u0142y bardzo trudne.<em>ledwo mogli\u015bmy wyj\u015b\u0107 z domu.<\/em>\".<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u017bycie Nacho stopniowo si\u0119 komplikowa\u0142o: <em>\"W nasze \u017cycie wkroczy\u0142 \u015bwiat onkologii i epilepsji. Nasza czw\u00f3rka sta\u0142a si\u0119 prawdziwymi lekarzami pediatrycznego oddzia\u0142u intensywnej terapii, dbaj\u0105c o tchawic\u0119, ucz\u0105c si\u0119 r\u0119cznej wentylacji, reanimacji\".<\/em>. Noc dzielili mi\u0119dzy siebie, bo zaburzenia snu wymaga\u0142y, by kto\u015b przy nim czuwa\u0142:<em> \"Podczas gdy Jaime spa\u0142 przez cztery godziny ja by\u0142em z Nacho i o 3:30 zmienili\u015bmy si\u0119 na zmian\u0119\".<\/em>.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">W 2021 roku weszli na oddzia\u0142 pediatrycznej opieki paliatywnej, aby otrzyma\u0107 pe\u0142n\u0105 opiek\u0119, a nie tylko medyczn\u0105. W lipcu 2021 roku pojechali na pla\u017c\u0119, aby sp\u0119dzi\u0107 miesi\u0105c razem jako rodzina. Mar\u00eda opowiada mi, \u017ce jej ojciec zmar\u0142 26 lipca, kiedy byli jeszcze poza Madrytem: <em>\"Sytuacja Nacho sprawi\u0142a, \u017ce nie do pomy\u015blenia by\u0142o, abym m\u00f3g\u0142 pojecha\u0107 na po\u017cegnanie i na pogrzeb\".<\/em>. Dwa dni p\u00f3\u017aniej jej syn zapad\u0142 w \u015bpi\u0105czk\u0119: <em>\"Zawsze m\u00f3wili\u015bmy, \u017ce byli jak E.T. i Elliot, bo \u017cycie jednego zale\u017ca\u0142o od \u017cycia drugiego\".<\/em>. Nacho odszed\u0142 24 sierpnia.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Mar\u00eda pami\u0119ta kilka zabawnych anegdot z Nacho, na przyk\u0142ad, kiedy zasn\u0119\u0142a podczas zmiany i w pewnym momencie zauwa\u017cy\u0142a, \u017ce kto\u015b ci\u0105gnie j\u0105 za palce: co za strach! Ma\u0142y ch\u0142opiec wydosta\u0142 si\u0119 z \u0142\u00f3\u017ceczka. Poniewa\u017c nie umia\u0142 m\u00f3wi\u0107, to by\u0142 jej spos\u00f3b na obudzenie go.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Maria otworzy\u0142a profil na <em>Instagram<\/em> z jedynym motywem, by dowiedzie\u0107 si\u0119, w co wpakowa\u0142a si\u0119 jej najstarsza c\u00f3rka. Na stronie <em><a href=\"https:\/\/www.instagram.com\/misuperheroesincapa\/?hl=es\">@misuperheroesincapa<\/a><\/em> zacz\u0105\u0142 dzieli\u0107 si\u0119 \u017cyciem Nacho i jego chorob\u0105, a liczba zwolennik\u00f3w stale ros\u0142a: <em>\"Zobaczy\u0142em, \u017ce przekazywanie naszego \u017cycia by\u0142o sposobem nauczania, \u017ce mo\u017cliwe jest bycie szcz\u0119\u015bliwym po\u015br\u00f3d cierpienia\".<\/em>. Poprzez ten portal spo\u0142eczno\u015bciowy wiele os\u00f3b trafi\u0142o do niej. Nawi\u0105zali <em>#nachlist<\/em>W swoim telefonie kom\u00f3rkowym prowadzi list\u0119 z intencjami, o kt\u00f3rych ludzie m\u00f3wi\u0105 mu, \u017ce go prosili. Kilka miesi\u0119cy temu przyjaciel rodziny mia\u0142 operacj\u0119 serca. Tego ranka Maria wys\u0142a\u0142a mu wiadomo\u015b\u0107, \u017ce b\u0119dzie go bardzo pami\u0119ta\u0107 i \u017ce Nacho b\u0119dzie z nim przez ca\u0142y czas na sali operacyjnej. Jego przyjaciel opowiedzia\u0142 mu, \u017ce kiedy przyby\u0142 na sal\u0119 operacyjn\u0105, ca\u0142y zesp\u00f3\u0142 przedstawi\u0142 si\u0119. Podszed\u0142 do niego ch\u0142opiec ubrany na niebiesko i powiedzia\u0142:<em> \"B\u0119d\u0119 z tob\u0105 ca\u0142y czas, jestem Nacho\".<\/em>. Nast\u0119pnie zapyta\u0142 o ch\u0142opca na OIOM-ie i personel na oddziale, ale nikt nie wiedzia\u0142 o pracuj\u0105cym tam Nacho.\u00a0<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Maria przyznaje, \u017ce na pocz\u0105tku <em>rozgniewany <\/em>troch\u0119 z Bogiem, ale t\u0142umaczy, \u017ce to z\u0142o\u015b\u0107 ka\u017cdego dziecka na ojca, gdy czego\u015b nie rozumie. Przez pierwsze kilka miesi\u0119cy powtarza\u0142 si\u0119 przed tabernakulum: <em>\"Wci\u0105gn\u0105\u0142e\u015b mnie w ten ba\u0142agan, pom\u00f3\u017c mi z niego wyj\u015b\u0107 i nie\u015b\u0107 go z rado\u015bci\u0105\".<\/em> Przy wielu okazjach <em>dlaczego<\/em> rzeczy. Pewnego dnia zda\u0142 sobie spraw\u0119, \u017ce musi szuka\u0107 <em>po co.<\/em> Hashtag dla Twojego konta to. <em>#cadiaesunregalo: \"Tak stara\u0142em si\u0119 \u017cy\u0107 przez te lata, bo B\u00f3g dawa\u0142 mi nowy dzie\u0144 z Nacho, z ca\u0142\u0105 rodzin\u0105 i chcia\u0142em go prosi\u0107 o si\u0142\u0119 do niesienia krzy\u017ca\".<\/em> <\/p>","protected":false},"excerpt":{"rendered":"<p>Mar\u00eda est\u00e1 casada con Jaime desde hace dieciocho a\u00f1os y tiene cuatro hijos: \u201cDos en la tierra y dos en el cielo\u201d, apunta orgullosa. El gran tesoro, Nacho, lleg\u00f3 en 2016. Entr\u00f3 en parada cardiorrespiratoria nada m\u00e1s nacer y eso desencaden\u00f3 una peregrinaci\u00f3n por hospitales hasta que dieron con el diagn\u00f3stico: s\u00edndrome de Ondine, una [&hellip;]<\/p>\n","protected":false},"author":74,"featured_media":28559,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","_members_access_role":[],"_members_access_error":""},"categories":[36,42],"tags":[547],"class_list":["post-28553","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actualidad","category-experiencias","tag-gente-que-cuenta"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>\u201cDios me regalaba un nuevo d\u00eda con Nacho&quot; - Omnes<\/title>\n<meta name=\"description\" content=\"A Nacho, que se fue al cielo en 2021, su madre lo defini\u00f3 como \u201cun h\u00e9roe que no usa capa\u201d. 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