{"id":14640,"date":"2014-03-22T00:02:55","date_gmt":"2014-03-21T23:02:55","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=14640"},"modified":"2014-10-20T20:02:14","modified_gmt":"2014-10-20T18:02:14","slug":"zivot-se-nesmi-tocit-jen-kolem-nemoci-ditete","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=14640","title":{"rendered":"„\u017divot se nesm\u00ed to\u010dit jen kolem nemoci d\u00edt\u011bte“"},"content":{"rendered":"

P\u0159em\u00fd\u0161lela, co po n\u00ed \u017eivot chce. Nenapadlo ji nic men\u0161\u00edho, ne\u017e \u017ee na n\u00e1m\u011bst\u00ed uspo\u0159\u00e1d\u00e1 velkou spole\u010denskou akci \u0160t\u011bst\u00ed s p\u0159ek\u00e1\u017ekou. M\u00e1 pomoci nejen lidem a rodin\u00e1m s handicapem.<\/strong><\/p>\n

 <\/p>\n

I matka tla\u010d\u00edc\u00ed voz\u00edk s handicapovan\u00fdm d\u00edt\u011btem m\u016f\u017ee b\u00fdt \u0161\u0165astn\u00e1. M\u016f\u017ee se sm\u00e1t b\u011b\u017en\u00fdm v\u011bcem, b\u00fdt jednou z davu. Tak uva\u017euje Alena \u010carva\u0161ov\u00e1 z Bor\u0161ova nad Vltavou.<\/p>\n

Na prvn\u00ed pohled energick\u00e1 a odhodlan\u00e1 \u017eena se rozhodla, \u017ee na \u010deskobud\u011bjovick\u00e9m n\u00e1m\u011bst\u00ed P\u0159emysla Otakara II. uspo\u0159\u00e1d\u00e1 v z\u00e1\u0159\u00ed velkou akci s n\u00e1zvem \u0160t\u011bst\u00ed s p\u0159ek\u00e1\u017ekou. Chce na n\u00ed uk\u00e1zat, jak \u017eij\u00ed rodiny a lid\u00e9, kte\u0159\u00ed se denn\u011b vypo\u0159\u00e1d\u00e1vaj\u00ed s n\u011bjak\u00fdm handicapem. Nad k\u00e1vou pak otev\u0159en\u011b mluv\u00ed i o vlastn\u00ed rodin\u011b a neust\u00e1l\u00e9m dohledu, kter\u00fd pot\u0159ebuje jedna z jej\u00edch dcer.<\/p>\n

– Na va\u0161\u00ed spole\u010densk\u00e9 akci v Bud\u011bjovic\u00edch se setkaj\u00ed rodiny s d\u011btmi s mimo\u0159\u00e1dnou p\u00e9\u010di, ale i ostatn\u00ed lid\u00e9. Kdy se ve va\u0161\u00ed hlav\u011b zrodil n\u00e1pad tuto ud\u00e1lost uspo\u0159\u00e1dat?<\/strong><\/p>\n

Jsem hrozn\u00fd maximalista. Nejd\u0159\u00edve jsem si dokonce myslela, \u017ee by to mohla b\u00fdt celorepublikov\u00e1 akce ve v\u0161ech velk\u00fdch m\u011bstech. Ta my\u0161lenka je ve mn\u011b st\u00e1le, ale bude lep\u0161\u00ed za\u010d\u00edt postupn\u011b. Poprv\u00e9 m\u011b to napadlo v l\u00e9t\u011b na dovolen\u00e9. Ve\u010der jsem le\u017eela v posteli a ptala se, co po mn\u011b \u017eivot vlastn\u011b chce. Pro\u010d se mi d\u011bj\u00ed n\u011bkter\u00e9 v\u011bci, co um\u00edm, neum\u00edm, a jak to mohu vyu\u017e\u00edt. \u0158ekla jsem si, \u017ee um\u00edm organizovat a rozh\u00fdb\u00e1vat lidi a m\u00e1m na srdci n\u011bco, co chci sd\u011blit.<\/p>\n

– Co u\u017e jste od l\u00e9ta stihla p\u0159ipravit?<\/strong><\/p>\n

Nejd\u0159\u00edve jsem v\u0161e sepsala, odhadla, kolik to bude st\u00e1t, a koho a co k tomu budu pot\u0159ebovat. Pak jsem oslovila nap\u0159\u00edklad \u0159editelku poji\u0161\u0165ovny ministerstva vnitra a ona m\u011b podpo\u0159ila s t\u00edm, \u017ee je to dobr\u00e1 my\u0161lenka. U\u017e m\u00e1me term\u00edn, akce bude 28. z\u00e1\u0159\u00ed na n\u00e1m\u011bst\u00ed P\u0159emysla Otakara II.<\/p>\n

– Budete m\u00edt i zn\u00e1m\u00e9ho moder\u00e1tora?<\/strong><\/p>\n

Akci bude moderovat Ji\u0159\u00ed M\u00e1dl. P\u0159isl\u00edben\u00e1 je \u00fa\u010dast skupin The Tap Tap a Nezma\u0159i. Spolupracujeme s Arpidou, pak s \u010deskobud\u011bjovick\u00fdm St\u0159ediskem ran\u00e9 p\u00e9\u010de a Jiho\u010deskou univerzitou. To jsou na\u0161i partne\u0159i, kte\u0159\u00ed se na akci pod\u00edlej\u00ed. M\u00e1me u\u017e i z\u00e1\u0161titu hejtmana a podala jsem \u017e\u00e1dost o grant tak\u00e9 na magistr\u00e1t. V sou\u010dasn\u00e9 dob\u011b oslovujeme sponzory, kte\u0159\u00ed maj\u00ed chu\u0165 spojit sv\u00e9 jm\u00e9no s my\u0161lenkou na\u0161\u00ed akce. Za ka\u017ed\u00e9ho takov\u00e9ho jsme velmi vd\u011b\u010dn\u00ed.<\/p>\n

– N\u011bkolikr\u00e1t jste \u0159ekla, \u017ee akc\u00ed chcete n\u011bco sd\u011blit. Co chcete \u0159\u00edct a jakou formou?<\/strong><\/p>\n

Sd\u011blen\u00ed jsou dv\u011b. Prvn\u00ed sm\u011b\u0159uji na rodi\u010de, kter\u00fdm se narodilo d\u00edt\u011b s handicapem. Nebo k n\u011bmu v pr\u016fb\u011bhu \u017eivota dojde, ale i k lidem, kte\u0159\u00ed maj\u00ed doma n\u011bkoho s nevyl\u00e9\u010ditelnou nemoc\u00ed.<\/p>\n

– A to druh\u00e9?<\/strong><\/p>\n

M\u00ed\u0159\u00edm k ve\u0159ejnosti, kter\u00e1 mezi bl\u00edzk\u00fdmi nikoho takov\u00e9ho nem\u00e1. Jde jen o m\u016fj n\u00e1zor a ostatn\u00ed nemus\u00ed souhlasit, budu ale r\u00e1da, kdy\u017e se inspiruj\u00ed. Rodin\u00e1m chci \u0159\u00edct, \u017ee je d\u016fle\u017eit\u00e9 p\u0159ijmout, co je v \u017eivot\u011b potkalo, a nemus\u00ed to br\u00e1t jako k\u0159\u00ed\u017e, kter\u00fd maj\u00ed t\u00e1hnout, ale jako p\u0159\u00edle\u017eitost k posunu d\u00e1l. Chci, aby se nevn\u00edmali tak, \u017ee na n\u011b okol\u00ed pohl\u00ed\u017e\u00ed a \u0159\u00edk\u00e1, jakou maj\u00ed sm\u016flu, jak\u00e9 je potkalo ne\u0161t\u011bst\u00ed.<\/p>\n

– Je to sv\u00fdm zp\u016fsobem i \u0161t\u011bst\u00ed?<\/strong><\/p>\n

My jsme ti, kte\u0159\u00ed se staraj\u00ed o n\u011bkoho, kdo m\u00e1 moc m\u011bnit sv\u011bt. Dostali jsme dom\u016f and\u011bla, tak\u017ee jsme na tom sv\u00fdm zp\u016fsobem dob\u0159e. M\u00e1me samoz\u0159ejm\u011b stra\u0161n\u011b moc pr\u00e1ce. J\u00e1 t\u0159eba \u0159e\u0161\u00edm situace, \u017ee se oto\u010d\u00edm a najednou u\u017e m\u00e1m vypu\u0161t\u011bn\u00e9 topen\u00ed nebo dcera sn\u00ed minci. Na druhou stranu, ten \u010dlov\u011bk v\u00e1m d\u00e1v\u00e1 n\u011bco, co v\u00e1m nikdo jin\u00fd ned\u00e1.<\/p>\n

– Ud\u011blal handicap va\u0161\u00ed dcery Lucinky v\u00e1s a rodinu lep\u0161\u00edmi lidmi?<\/strong><\/p>\n

Sp\u00ed\u0161 bych \u0159ekla lidmi s \u0161ir\u0161\u00edm rozhledem. Nevid\u00edte jen za prvn\u00ed roh, ale za n\u011bkolik dal\u0161\u00edch. Naopak m\u011b to zbavilo m\u00fdch mladick\u00fdch ide\u00e1l\u016f. Myslela jsem si, \u017ee jsem lep\u0161\u00ed, ale nen\u00ed to tak. V\u00edm, \u017ee si dok\u00e1\u017eu s\u00e1hnout na dno a b\u00fdt o\u0161kliv\u00e1, a pak je mi to samoz\u0159ejm\u011b l\u00edto. Bez dcery bych to nepoznala, d\u00e1v\u00e1 mi v\u011bd\u011bt, kdo jsem, \u017ee nemohu nikoho soudit.<\/p>\n

– Jakou nemoc dcera m\u00e1?<\/strong><\/p>\n

Sm\u00ed\u0161enou neurologickou poruchu \u2013 ment\u00e1ln\u00ed retardaci. To znamen\u00e1, \u017ee se chov\u00e1 nestandardn\u011b. Je sice stra\u0161n\u011b dobrosrde\u010dn\u00e1, co\u017e s nemoc\u00ed nesouvis\u00ed, ale nedok\u00e1\u017ee se koncentrovat, vzn\u00e1\u0161\u00ed se n\u011bkde nad zem\u00ed a je nevyzpytateln\u00e1. D\u011bl\u00e1 v\u011bci, o kter\u00fdch v\u00ed, \u017ee je d\u011blat nem\u00e1. Ta informace se zkr\u00e1tka nedostane tak daleko, jak by m\u011bla. Bude v\u00e1m do o\u010d\u00ed \u0159\u00edkat, \u017ee pen\u00edze se do pusy nestrkaj\u00ed, ale p\u0159itom si je tam d\u00e1. A je hodn\u011b rychl\u00e1, i kdy\u017e stoj\u00edm u n\u00ed, tak pak nestihnu v\u010das zareagovat a minci j\u00ed sebrat.<\/p>\n

– Kolik je j\u00ed let? M\u00e1te je\u0161t\u011b jednu dceru, Jani\u010dku. Jak\u00fd spolu maj\u00ed vztah?<\/strong><\/p>\n

Lucince bude sedm, mlad\u0161\u00ed Jani\u010dce budou t\u0159i roky. \u0158\u00edkaj\u00ed maminko, my se milujeme. Uv\u011bdomuji si, \u017ee jsou nyn\u00ed ment\u00e1ln\u011b na stejn\u00e9 \u00farovni. N\u00e1ramn\u011b si rozum\u00ed, mlad\u0161\u00ed ji vede, proto\u017ee je takov\u00e1 \u0159editelka a moc se j\u00ed l\u00edb\u00ed, \u017ee m\u016f\u017ee v\u011bt\u0161\u00ed sest\u0159i\u010dce n\u011bco ukazovat, a ona si to nech\u00e1 l\u00edbit. K\u00e9\u017e by to vydr\u017eelo na v\u011bky, ale m\u00e1m obavy, \u017ee se s postupuj\u00edc\u00edm \u010dasem za\u010dnou rozch\u00e1zet. T\u0159eba ale ne, sna\u017e\u00edm se je vychov\u00e1vat tak, aby se to nestalo. Jsou to sest\u0159i\u010dky, kter\u00e9 jsou si navz\u00e1jem moc u\u017eite\u010dn\u00e9.<\/p>\n

– Vra\u0165me se zp\u00e1tky k chystan\u00e9 akci na n\u00e1m\u011bst\u00ed. Jak si den \u0160t\u011bst\u00ed s p\u0159ek\u00e1\u017ekou p\u0159edstavujete?<\/strong><\/p>\n

Krom\u011b zm\u00edn\u011bn\u00fdch hudebn\u00edch skupin m\u00e1me v pl\u00e1nu b\u011bh p\u0159es p\u0159ek\u00e1\u017eky. Ty vyrob\u00ed ze sl\u00e1my klienti Arpidy. \u00da\u010dastn\u00edci budou m\u00edt mo\u017enost si koupit de\u0161tn\u00edky nebo tri\u010dka. Zakoupen\u00edm p\u0159isp\u011bj\u00ed k tomu, \u017ee budeme v\u0161ichni vypadat stejn\u011b a t\u00e1hneme za jeden provaz. V\u00fdt\u011b\u017eek z prodeje dostane Arpida. Ona a dal\u0161\u00ed organizace pom\u00e1haj\u00edc\u00ed rodin\u00e1m s nemocn\u00fdm \u010dlov\u011bkem. Budou m\u00edt mo\u017enost p\u0159edstavit a uk\u00e1zat, co d\u011blaj\u00ed. Akci bych cht\u011bla symbolicky kon\u010dit t\u00edm, \u017ee se v\u0161ichni pod de\u0161tn\u00edky schov\u00e1me.<\/p>\n

– M\u00e1te na mysli n\u011bjak\u00e9 konkr\u00e9tn\u00ed organizace?<\/strong><\/p>\n

Hlavn\u011b ty, kter\u00e9 nab\u00edzej\u00ed takzvanou respitn\u00ed p\u00e9\u010di. Um\u00ed se tedy postarat o nemocn\u00e9ho \u010dlov\u011bka a pohl\u00eddaj\u00ed ho do doby, ne\u017e si vy za\u0159\u00edd\u00edte pot\u0159ebn\u00e9 v\u011bci. Ale t\u0159eba v\u00e1m i umo\u017en\u00ed n\u011bkam odjet a vy\u010distit si hlavu.<\/p>\n

– Vy\u010distit hlavu?<\/strong><\/p>\n

Ano, rodi\u010de jsou v permanentn\u00edm nasazen\u00ed, \u010dasto \u017eij\u00ed ve strachu, co s d\u00edt\u011btem jednou bude. Z toho \u010dlov\u011bk ob\u010das pot\u0159ebuje na chv\u00edli vypadnout, jinak to nedopadne dob\u0159e.<\/p>\n

– U\u017e rozum\u00edm…<\/strong><\/p>\n

Mnoz\u00ed se nemohou obr\u00e1tit o pomoc na prarodi\u010de, pro n\u011b jsou pak tyto organizace nesm\u00edrn\u011b d\u016fle\u017eit\u00e9. Takov\u00fdch spole\u010dnost\u00ed, bohu\u017eel, nen\u00ed mnoho, pot\u00fdkaj\u00ed se s obrovsk\u00fdmi finan\u010dn\u00edmi pot\u00ed\u017eemi, jsou \u010dasto odk\u00e1z\u00e1ni na sponzory, kter\u00fdch nen\u00ed nazbyt. P\u0159esto na ty, kte\u0159\u00ed existuj\u00ed, se lid\u00e9 nesm\u00ed b\u00e1t obr\u00e1tit. To nen\u00ed selh\u00e1n\u00ed, ale naopak prost\u0159edek, jak pomoci rodin\u011b, proto\u017ee ona nen\u00ed jen d\u00edt\u011b. \u017divot se nesm\u00ed to\u010dit jen kolem jeho nemoci, jinak zbo\u0159\u00edte v\u0161echno kolem.<\/p>\n

– P\u0159ijmout n\u011bco takov\u00e9ho je asi pro mnoh\u00e9 dost slo\u017eit\u00e9.<\/strong><\/p>\n

N\u011bkdy to trv\u00e1 roky, ale kdy\u017e si nutnost \u017e\u00edt d\u00e1l \u010dlov\u011bk uv\u011bdom\u00ed, kdy\u017e si dovol\u00ed b\u00fdt \u0161\u0165astn\u00fd navzdory bolesti, sn\u00e1z pak v\u0161e p\u0159ij\u00edm\u00e1. I to bychom cht\u011bli akc\u00ed na n\u00e1m\u011bst\u00ed \u0159\u00edct a uk\u00e1zat. A\u017e se n\u00e1m tohle dostane pod k\u016f\u017ei, pak mezi sebou kone\u010dn\u011b p\u0159estaneme d\u011blat rozd\u00edly.<\/p>\n

Mlad\u00e1 fronta DNES<\/p>\n\n\n\n\n
Luk\u00e1\u0161 Marek<\/td>\n<\/tr>\n
<\/td>\nhttp:\/\/zpravy.idnes.cz\/ mfdnes.asp<\/a><\/p>\n

ilustra\u010dn\u00ed foto: nickfrost sxc.hu<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n","protected":false},"excerpt":{"rendered":"

P\u0159em\u00fd\u0161lela, co po n\u00ed \u017eivot chce. Nenapadlo ji nic men\u0161\u00edho, ne\u017e \u017ee na n\u00e1m\u011bst\u00ed uspo\u0159\u00e1d\u00e1 velkou spole\u010denskou akci \u0160t\u011bst\u00ed s p\u0159ek\u00e1\u017ekou. M\u00e1 pomoci nejen lidem […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":15289,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-14640","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-spolecnost"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/14640","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=14640"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/14640\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/15289"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=14640"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=14640"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=14640"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}