{"id":1404,"date":"2018-05-05T21:51:18","date_gmt":"2018-05-05T19:51:18","guid":{"rendered":"http:\/\/klubcf.sk\/?p=1404"},"modified":"2018-05-05T22:25:30","modified_gmt":"2018-05-05T20:25:30","slug":"preco-som-stala-v-stanku","status":"publish","type":"post","link":"https:\/\/klubcf.sk\/index.php\/2018\/05\/05\/preco-som-stala-v-stanku\/","title":{"rendered":"Pre\u010do som st\u00e1la v st\u00e1nku."},"content":{"rendered":"

V \u017eivote m\u00f4\u017eete \u00eds\u0165 r\u00f4znymi cestami. Bu\u010f sa zamierate na cie\u013e, alebo si u\u017e\u00edvate cestu, alebo zavriete o\u010di a \u010dak\u00e1te kedy to u\u017e skon\u010d\u00ed. Rozhodujeme sa ka\u017ed\u00fd de\u0148. Budem st\u00e1\u0165 v st\u00e1nku a hovori\u0165 s cudz\u00edmi \u013eu\u010fmi, alebo budem d\u00fafa\u0165 \u017ee sa to v\u0161etko akosi stane sam\u00e9?<\/b><\/p>\n

\"\"<\/p>\n

Ja nezn\u00e1\u0161am st\u00e1\u0165 v st\u00e1nku a hovori\u0165 s cudz\u00edmi \u013eu\u010fmi. Som komunikat\u00edvny introvert. M\u00e1m kr\u00e1tku pam\u00e4\u0165 \u010do ma limituje a taktie\u017e nerozm\u00fd\u0161\u013eam nad t\u00fdm \u010do vypust\u00edm z \u00fast. Teda rozm\u00fd\u0161\u013eam ale sp\u00e4tne. A n\u00e1sledne vyhodnocujem. A nie v\u017edy to dopadne pre m\u0148a lichotivo. Dos\u0165 bolo o mne, alebo e\u0161te \u010dosi.<\/p>\n

Pred \u00f4smimi rokmi sa n\u00e1m narodil chlap\u010dek Tobi. Nevl\u00e1dal d\u00fdcha\u0165 s\u00e1m bez pr\u00edstrojov a tak sme spolu str\u00e1vili tri mesiace v nemocnici. Nepomohlo. Ned\u00fdchal s\u00e1m. V piatom mesiaci n\u00e1\u0161ho pobytu si n\u00e1s zavolal prim\u00e1r z \u00c1RO a ozn\u00e1mil n\u00e1m, \u017ee mal\u00fd zostane u nich nast\u00e1lo. Toto bol ten okamih. Zrazu sa nie\u010do vo mne zaplo a v priebehu mesiaca som spolu s man\u017eelom zohnala pre mal\u00e9ho pr\u00edstroj na dom\u00e1cu p\u013e\u00facnu ventil\u00e1ciu pre mal\u00e9 b\u00e1b\u00e4tk\u00e1. Dokonca sme vybavili od pois\u0165ovne cel\u00fd servis a spotrebn\u00fd materi\u00e1l, ktor\u00fd nemala ani nemocnica. I\u0161lo to celkom \u013eahko, ten st\u00e1tis\u00edcov\u00fd pr\u00edstroj bol toti\u017e lacnej\u0161\u00ed ako dlhodob\u00e1 denn\u00e1 starostlivos\u0165 v nemocnici. Ke\u010f mal mal\u00fd osem mesiacov le\u017eal prv\u00fdkr\u00e1t doma vo svojej postie\u013eke.<\/p>\n

\"\"<\/p>\n

Ke\u010f sa n\u00e1m narodila Tami a zistila sa cystick\u00e1 fibr\u00f3za, pri\u0161lo za mnou na oddelenie ve\u013emi mil\u00e9 \u017eie\u0148a, ktor\u00e9 ma informovalo, \u017ee existuje klubCF a ke\u010f budem nie\u010do potrebova\u0165 m\u00f4\u017eem sa na nich obr\u00e1ti\u0165. Asi to bol zlomov\u00fd rok klubu, lebo odvtedy som o klube viac nepo\u010dula. A ani som nemala potrebu. Pri Tobim, boli starosti s Tami celkom easy, alebo som ich len nevn\u00edmala. Ale ot\u00e1zky boli a tak som si e\u0161te na modrom ko\u0148ovi za\u010dala p\u00edsa\u0165 s mami\u010dkami. Nesk\u00f4r sme si vytvorili skupinu na FB. Mali sme rovnako star\u00e9 deti, rovnak\u00e9 probl\u00e9my a ot\u00e1zky. Probl\u00e9my dospel\u00e1kov sme si nechceli a nevedeli pripusti\u0165. A tak sme si spolu na\u017e\u00edvali. Mysleli sme, \u017ee to zvl\u00e1dneme takto u\u017e nast\u00e1lo. A\u017e n\u00e1m jedn\u00e9ho d\u0148a povedali, \u017ee plne funguj\u00face nemocni\u010dn\u00e9 oddelenie v Podunajsk\u00fdch Biskupiciach, ktor\u00e9 na\u0161im de\u0165om vyhovuje, chc\u00fa zru\u0161i\u0165, preto\u017ee niekto m\u00e1 zlat\u00fd g\u00e1gor. To bola prv\u00e1 facka. \u010eal\u0161ie pri\u0161li pri neschva\u013eovan\u00ed opatrovate\u013esk\u00fdch pr\u00edspevkoch, \u010di opakovanom neschva\u013eovan\u00ed pr\u00edspevkov (hygiena, benz\u00edn, stravovanie).<\/p>\n

 <\/p>\n

Nie\u010do nieje v poriadku, niekto zabudol \u010do to vlastne cystick\u00e1 fibr\u00f3za je. <\/b><\/p>\n

Sme nov\u00e1 gener\u00e1cia rodi\u010dov. T\u00ed \u010do boli pred nami maj\u00fa teraz u\u017e dospel\u00e9 deti, ktor\u00e9 \u017eij\u00fa svojim \u017eivotom. Nie v\u017edy je \u013eahk\u00fd, sk\u00f4r je ve\u013emi \u0165a\u017ek\u00fd, ale v\u010faka rodi\u010dom ten \u017eivot st\u00e1le je. Iba v\u010faka rodi\u010dom s\u00fa z det\u00ed dospel\u00ed \u013eudia. Rodi\u010dia st\u00e1li nad poste\u013eou, \u010di tou doma, alebo nemocni\u010dnou. Rodi\u010dia st\u00e1li pred dverami ministra, aby vybavili lieky. Aby s pomocou lek\u00e1rov postavili Podunajsk\u00e9 Biskupice. Viem \u017ee ten 14 d\u0148ov\u00fd pobyt tam nie je jednoduch\u00fd, ale od\u017eila som si na vlastnej ko\u017ei osem mesiacov a potom 5 rokov nepravidelne na r\u00f4znych oddeleniach na Kram\u00e1roch a Podunajsk\u00e9 s\u00fa dovolenkou. Miestom kde je skuto\u010dn\u00fd pokoj a na\u0161e deti sa m\u00f4\u017eu vylie\u010di\u0165 z ak\u00fatnych chor\u00f4b v na\u0161ej osobnej pr\u00edtomnosti.<\/p>\n

Ke\u010f mi man\u017eel v de\u0148 konania prvom\u00e1jov\u00fdch Malaciek povedal, \u017ee s\u00fa op\u00e4\u0165 tlaky na zru\u0161enie Biskup\u00edc a \u017ee s\u00fa neskuto\u010dne siln\u00e9. Rozplakala som sa.<\/p>\n

Pre\u010do to tak je? Pre\u010do zlat\u00fd g\u00e1gor nem\u00e1 nikdy dos\u0165? Pre\u010do ke\u010f jeden od\u00edde pr\u00edde druh\u00fd?<\/p>\n

Odpoved\u00e1m si sama, neviem.<\/p>\n

\"\"Tento \u010dl\u00e1nok mal by\u0165 o st\u00e1nku a o tom ak\u00e9 to bolo dobr\u00e9. Ako sme piati rodi\u010dia vytvorili nie\u010do. Ako sme sa te\u0161ili ke\u010f \u013dubo priniesol h\u00e9liov\u00e9 bal\u00f3ny, ktor\u00e9 n\u00e1m naf\u00fakali bal\u00f3nov\u00e9 st\u00e1nky zadarmo. Ako sme chceli zru\u0161i\u0165 ma\u013eovanie na tv\u00e1r po \u0161iestich hodin\u00e1ch, ale deti st\u00e1le prich\u00e1dzali, lebo na\u0161i maliari boli nielen kreat\u00edvny ale aj komunikat\u00edvny. \u00daplne vid\u00edm ako sa mami\u010dka Katka te\u0161ila ke\u010f som jej povedala, \u017ee sme vyzbierali 345Eur. A m\u00f4\u017eeme v\u010faka tomu \u010fal\u0161ie akcie pripravi\u0165 e\u0161te lep\u0161ie. M\u00f4\u017eme, ale nie sami. Nie piati \u013eudia. Na Slovensku je okolo 300 pacientov s CF, polovica z toho det\u00ed. Pros\u00edm pridajte sa k n\u00e1m na \u010fal\u0161ie akcie. Spojme sily.<\/p>\n

Preto\u017ee ak to neurob\u00edme my. Nik in\u00fd to nesprav\u00ed. A postavi\u0165 sa do st\u00e1nku je \u010dere\u0161ni\u010dka na torte. Bud\u00fa ur\u010dite \u0165a\u017e\u0161ie sk\u00fa\u0161ky, ktor\u00e9 budeme musie\u0165 pre na\u0161e deti vybojova\u0165.<\/p>\n

 <\/p>\n

\u010eakujem man\u017eelom \u017demberyov\u00fdm a ich maliarsk\u00e9mu teamu, \u013dubke Glaj\u0161ekovej, Veronike Hy\u017eovej, m\u00f4jmu Lubovi a sebe, \u017ee sme to dali. St\u00e1lo n\u00e1s to jeden sviatok, ale ani jeden z n\u00e1s ne\u013eutuje.<\/p>\n

\n

 <\/p>\n

Tak pridajte sa k n\u00e1m na \u010fal\u0161\u00edch akci\u00e1ch a ne\u013eutujme sa, ale \u013eutujme, \u017ee nest\u00edhame urobi\u0165 viac. <\/b><\/span><\/p>\n<\/blockquote>\n

19.5. Skalica<\/b><\/span><\/p>\n

16.6. Hol\u00ed\u010d<\/b><\/span><\/p>\n

\"\"<\/b><\/span><\/p>\n

Ak by ste sa na v\u00fdchode dohodli, \u017ee chcete robi\u0165 tie\u017e st\u00e1nok, je mo\u017en\u00e9 zak\u00fapi\u0165 cel\u00fa v\u00fdbavu dvojmo. M\u00e1m aj dobr\u00fd typ na organiz\u00e1tora, v\u0161ak Lucka Novobi\u013eska\u2026<\/b><\/p>\n

 <\/p>\n

\u010eakujeme firme NATIA s.r.o Osusk\u00e9 za sponzorsk\u00e9 zak\u00fapenie n\u00e1dhern\u00e9ho oran\u017eov\u00e9he st\u00e1nku. <\/p>\n","protected":false},"excerpt":{"rendered":"

V \u017eivote m\u00f4\u017eete \u00eds\u0165 r\u00f4znymi cestami. Bu\u010f sa zamierate na cie\u013e, alebo si u\u017e\u00edvate cestu, alebo zavriete o\u010di a \u010dak\u00e1te kedy to u\u017e skon\u010d\u00ed. Rozhodujeme sa ka\u017ed\u00fd de\u0148. Budem st\u00e1\u0165 v st\u00e1nku a hovori\u0165 s cudz\u00edmi \u013eu\u010fmi, alebo budem d\u00fafa\u0165 \u017ee sa to v\u0161etko akosi stane sam\u00e9? Ja nezn\u00e1\u0161am st\u00e1\u0165 v st\u00e1nku a hovori\u0165 s […]<\/p>\n","protected":false},"author":1,"featured_media":1410,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"ngg_post_thumbnail":0,"footnotes":""},"categories":[5],"tags":[],"class_list":["post-1404","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-klub-cf"],"yoast_head":"\nPre\u010do som st\u00e1la v st\u00e1nku. - klubcf.sk<\/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:\/\/klubcf.sk\/index.php\/2018\/05\/05\/preco-som-stala-v-stanku\/\" \/>\n<meta property=\"og:locale\" content=\"sk_SK\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Pre\u010do som st\u00e1la v st\u00e1nku. - klubcf.sk\" \/>\n<meta property=\"og:description\" content=\"V \u017eivote m\u00f4\u017eete \u00eds\u0165 r\u00f4znymi cestami. 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Bu\u010f sa zamierate na cie\u013e, alebo si u\u017e\u00edvate cestu, alebo zavriete o\u010di a \u010dak\u00e1te kedy to u\u017e skon\u010d\u00ed. Rozhodujeme sa ka\u017ed\u00fd de\u0148. Budem st\u00e1\u0165 v st\u00e1nku a hovori\u0165 s cudz\u00edmi \u013eu\u010fmi, alebo budem d\u00fafa\u0165 \u017ee sa to v\u0161etko akosi stane sam\u00e9? 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