{"id":39027,"date":"2022-02-25T17:49:25","date_gmt":"2022-02-25T16:49:25","guid":{"rendered":"https:\/\/www.fundacioires.org\/?p=39027"},"modified":"2022-02-25T22:58:14","modified_gmt":"2022-02-25T21:58:14","slug":"la-resiliencia-davant-la-incertesa","status":"publish","type":"post","link":"https:\/\/www.fundacioires.org\/ca\/la-resiliencia-davant-la-incertesa\/","title":{"rendered":"La resili\u00e8ncia davant la incertesa<\/strong>"},"content":{"rendered":"\n

S\u00f3c l’Eva, una mare, una dona, una persona. Per\u00f2 tinc una etiqueta, una etiqueta molt gran, tot i que jo s\u00f3c petita de mida. Curi\u00f3s, oi? Una etiqueta que va tardar 32 anys a posar-hi el nom correcte. En aquesta etiqueta ara hi posa “Displ\u00e0sia geleof\u00edsica”. Qu\u00e8 \u00e9s? Us deveu preguntar. Doncs \u00e9s una malaltia minorit\u00e0ria. I \u00e9s tan minorit\u00e0ria que s\u00f3c l’\u00fanica en tot l’estat espanyol que la t\u00e9, i \u00e9s tan minorit\u00e0ria que a tot el m\u00f3n som molt pocs que la tenim, i \u00e9s tan minorit\u00e0ria que cada cop que em veu metge em demana que li expliqui la meva malaltia. I la conversa sempre \u00e9s la mateixa:<\/p>\n\n\n\n

– Doctor\/a, s\u00f3c economista, no s\u00f3c doctora.<\/strong><\/p>\n\n\n\n

– Tant \u00e9s, tu tens m\u00e9s informaci\u00f3 que jo de la teva malaltia.<\/strong><\/p>\n\n\n\n

I aix\u00ed \u00e9s! Una malaltia minorit\u00e0ria suposa que tu, com a pacient, ets m\u00e9s coneixedora de la malaltia que persones expertes en medicina. A vegades sento frustraci\u00f3 i a vegades sento fortalesa. Sentiments contradictoris, per\u00f2 alhora complementaris. Per\u00f2 el que predomina en una malaltia minorit\u00e0ria \u00e9s la incertesa. El desconeixement de la malaltia, la poca investigaci\u00f3, la manca d’experi\u00e8ncies d’altres pacients, el no saber com evolucionar\u00e0s, la negaci\u00f3 de tractaments m\u00e8dics, i un llarg etc\u00e8tera que fa que la incertesa sempre estigui present. Per\u00f2 de ben petita, a la incertesa li vaig plantar cara: vaig fer un respir, un somriure i a continuaci\u00f3 vaig iniciar una lluita perqu\u00e8 malgrat que la medicina no ens coneix i la instituci\u00f3 no ens reconeix, nosaltres hi som i hi serem! I aconseguirem que la medicina ens conegui i que la instituci\u00f3 ens reconegui i que la societat ens respecti! I s\u00ed, aquesta \u00e9s la gran resili\u00e8ncia que m’ha donat la incertesa.<\/p>\n\n\n\n

Per una altra banda, va arribar el dia que vaig decidir que era el moment de ser mare. Un instint que sempre he tingut latent. “Malaltia minorit\u00e0ria, amb discapacitat reconeguda, i vols ser mare! T’has begut l’enteniment!” em deia la societat. Doncs no, no me l’he begut! Vosaltres hi veieu debilitat, pena i minusvalidesa. Per\u00f2 no \u00e9s aix\u00ed! La “Gran etiqueta” m’ha donat fortalesa, alegria i valor. Vull ser mare i ho ser\u00e9! I res aturar\u00e0 la meva lluita per aconseguir-ho. Una lluita dura i llarga, perqu\u00e8 vaig haver de demostrar a tothom que s\u00f3c Capa\u00e7, capa\u00e7 de ser mare, capa\u00e7 de decidir, capa\u00e7 d’assolir, malgrat que la instituci\u00f3 m’encasella com a Dis(capacitada)!<\/p>\n\n\n\n

L’adopci\u00f3 d’un infant amb necessitats especials va ser la primera i \u00fanica opci\u00f3 que vam voler. No parava de llegir a la ment dels que m’estimen “Una altra bestialitat t’ha passat pel cap, Eva!”. I jo sempre he pensat que si adoptar un infant d’aquestes caracter\u00edstiques \u00e9s una bestialitat, jo tamb\u00e9 ho s\u00f3c! Tinc molt clar que la societat t\u00e9 por a la diversitat, a la difer\u00e8ncia, a la malaltia, per\u00f2 jo no. I recordo que durant les entrevistes del proc\u00e9s d’adopci\u00f3 ens remarcaven que el que predomina d’aquests infants \u00e9s la incertesa, i que per conviure amb la incertesa, buscaven fam\u00edlies amb capacitat de resili\u00e8ncia. I un altre cop, l’equip de la Fundaci\u00f3 IRES l’havia encertada! La meva experi\u00e8ncia vital encaixava amb aquesta filosofia, i, per tant, amb aquesta adopci\u00f3.<\/p>\n\n\n\n

I aix\u00ed ha estat com un infant amb una malaltia minorit\u00e0ria – diferent de la meva – ha trobat una fam\u00edlia. Una fam\u00edlia sense por a la incertesa, una fam\u00edlia amb una gran resili\u00e8ncia, una fam\u00edlia amb un gran sentit de l’humor, una fam\u00edlia amb capacitat de lluita, i una fam\u00edlia enamorada del seu fill i disposada a arribar fins on calgui per ell! Perqu\u00e8 les etiquetes, perqu\u00e8 la marginaci\u00f3 institucional, perqu\u00e8 la difer\u00e8ncia, perqu\u00e8 el desconeixement m\u00e8dic i perqu\u00e8 res ens fa por! Torno a viure aquelles converses amb experts de la medicina de “mare, explica’m la malaltia del teu fill”. Per\u00f2 aquest cop no sento frustraci\u00f3, sin\u00f3 ganes d’explicar, de visibilitzar i de treballar perqu\u00e8 les malalties minorit\u00e0ries estiguin presents a totes les agendes. Lluitar per guanyar la batalla. I amb aquesta adopci\u00f3 puc dir que l’estem guanyant!<\/p>\n\n\n\n

Aix\u00ed que us animo a estimar un infant i\/o un adult amb una malaltia minorit\u00e0ria! Ser\u00e0 un cam\u00ed dur, per\u00f2 us asseguro que no trobareu ning\u00fa al m\u00f3n amb tanta fortalesa, amb tantes ganes de lluitar i amb tantes ganes de viure com elles, com nosaltres!<\/p>\n\n\n\n

I reflexioneu una cosa: els superherois tamb\u00e9 tenen una mutaci\u00f3 gen\u00e8tica!<\/p>\n\n\n\n

Gr\u00e0cies Hospital de Vall d’Hebron, gr\u00e0cies Hospital de Sant Joan de D\u00e9u, gr\u00e0cies equip d’adopcions de la Fundaci\u00f3 IRES, gr\u00e0cies a totes les amistats que m’heu acompanyat, gr\u00e0cies Borja, gr\u00e0cies V\u00edctor i Xavier, gr\u00e0cies papa i mama, i sobretot gr\u00e0cies fill meu!! Sense vosaltres no ho hauria aconseguit!<\/p>\n\n\n\n

El Servei d\u2019Adopci\u00f3 d\u2019Infants amb Necessitats Especials de la Fundaci\u00f3 IRES, ha creat la plataforma <\/em>www.busquemfamiliesespecials.org<\/em><\/a> amb l\u2019impuls de l\u2019Institut Catal\u00e0 de l\u2019Acolliment i de l\u2019Adopci\u00f3 (ICAA). Mai t\u2019has preguntat si la teva fam\u00edlia \u00e9s tan especial com per a canviar-li la vida a un infant? #BusquemFam\u00edliesEspecials.<\/em><\/p>\n\n\n\n

\n
Busquem fam\u00edlies especials!<\/strong><\/a><\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

Et presentem l’Eva, una mare, una dona i una persona amb el cor molt gran.<\/p>\n","protected":false},"author":7,"featured_media":39029,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[19],"tags":[155],"class_list":["post-39027","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-ires-blog","tag-adopcions"],"yoast_head":"\nLa resili\u00e8ncia davant la incertesa - Fundaci\u00f3 IRES<\/title>\n<meta name=\"description\" content=\"Et presentem l'Eva, una mare, una dona i una persona amb el cor molt gran. 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