Umboni: "Mwana wanga ali ndi Down's syndrome"

Sindinakhalepo munthu wamtundu wakukhala ndi mwana. Ndidali wamtundu wa apaulendo.Pofunitsitsa zokumana nazo ndi kukumana ndi luntha, ndinalemba nkhani ndi mabuku, ndimakondana pafupipafupi, ndipo kugaya kwa khanda sikunali mbali ya mawonekedwe anga. Ayi kupatukana, palibe kulola "areuh" ndi zotuluka zolakwa. Palibe mwana, chonde! Ndinatenga mimba mwangozi ndi Mgiriki yemwe ndinkamukonda kwambiri koma yemwe anabwerera kudziko lake Eurydice atangobadwa kumene, kutisiya opanda kanthu koma kununkhira kwa fodya wozizira. Sanamuzindikire mwana wake wamkazi. Vasilis, wachinyamata wamkulu ameneyu, mosakayikira sanafune kuyenda nane njira ya choonadi. Chifukwa Eurydice, atabadwa, analibe ma chromosomes 23 ngati ife, koma 23 awiriawiri ndi theka. Ndipotu, anthu omwe ali ndi matenda a Down syndrome amakhala ndi ma chromosome owonjezera. Ndi gawo laling'ono ili lomwe ndikufuna kuti ndiyankhule, chifukwa kwa ine ndi gawo labwinoko, mochulukirapo, mochulukirapo.

Mwana wanga wamkazi adayamba kundipatsa mphamvu zake, zomwe zidamupangitsa kukuwa kuyambira miyezi ingapo ya moyo wake, kuyitanitsa kukwera kwa ma strollers osatha ndi kutuluka mumzinda. Za kugona, ndinali kuyendetsa. Ndikuyendetsa galimoto, ndinalemba m'mutu mwanga. Ine yemwe ndimawopa kuti Dice wanga, - nayenso Buddha anali pakubadwa, mu mawonekedwe ake osonkhanitsidwa, wonyezimira kwambiri pazovala za msungwana wamng'ono zomwe ndidamukonzera -, zingandipangitse kudzoza kwanga, ndinapeza kuti, mosiyana, maganizo anali kuthamanga. Ndinkaopa zam'tsogolo, nzoona, ndi tsiku limene zokambirana zathu zidzatha. Koma mofulumira kwambiri, ndinayenera kuvomereza kuti mulimonsemo, sizinalepheretse wanga kugwira ntchito. Zinamuthandizanso kuti azigwira ntchito bwino. Kunena zoona, moona mtima. Ndinkafuna kumuwonetsa mwana wanga wamkazi zinthu zambiri ndikupita naye paulendo. Ngakhale kuti chuma changa sichinali bwino, ndinaona kuti chisonkhezero chimodzi chinali chofunika kwa ife. Panthawi imeneyi, sitinasiye kudziwana, ngakhale kuti nthawi zina tinkakumana ndi zoopsa. Ndinasoŵa ndalama, chitetezo, nthaŵi zina tinkakumana ndi ochereza achilendo, ndipo nditathawa pang’ono, ndinaganiza zobwerera ku Crete. Kutali kwa ine lingaliro loyatsanso moto ndi Vasilis yemwe ndimadziwa kale kuti adayambiranso ndi wina, koma ndimafuna kuwona ngati thandizo lakuthupi lingachokere kwa banja lake. Tsoka ilo, mlongo wake ndi amayi ake nawonso mantha chifukwa cha iye anatizemba momwe akanatha. Koma iye, anakana kuyanjananso ndi mwana wamng'onoyo, kunyalanyaza nthawi yomwe ndinamupatsa pamphepete mwa nyanja kuti ndiwakonde, adavomereza kwa ine, kuyenda ndi galu wake ... mayeso. Ndithudi, iye ankaona kuti n’zosatheka kukhala ndi mwana wodwala matenda a Down syndrome. Chigamulochi chili mkati. Vasilis analidi bambo ake a Eurydice, koma zimenezo sizinasinthe maganizo ake. Mosasamala kanthu, ndinali wokondwa kuti ndabwera mpaka pano, ku Chania, Krete. Kumene makolo a Dice anabadwira, kumene ankakhala, mu miyala yakale ija ndi mphepo imeneyo. Masabata aŵiri okhalamo sanam’patse atate, koma analimbitsanso maunansi athu. Madzulo, pabwalo lathu, tinkakonda kunena kuti mwezi ugone bwino kwinaku tikukokera kununkhira kwa tchire ndi thyme.

Mafuta ofunda awa, ndidawaiwala mwachangu ndisanalowe mu nazale, Eurydice adayamba kudwala khansa ya m'magazi. Pamene chithandizo chododometsa chinayamba, atate wanga analinganiza kutiika m’chipatala ku Los Angeles ndi kulembetsa wachichepereyo ku inshuwaransi yake yaumoyo. Mwana wanga wamkazi atavala mitundu yonyezimira anakutidwa ndi catheter ndi machubu. Ine ndekha (bambo ake omwe ndidawafunsa ngati atha kukhala wopereka mafupa ogwirizana adandiuza kuti ndisiye osachita chilichonse kuti ndimupulumutse), Dice adapirira mitundu yonse yamankhwala oyipa, molimba mtima. . Chifukwa chofuna kumutaya, ndinagwiritsa ntchito nthawi yaifupi iliyonse kuthamangira panja kukampatsa chilichonse chimene chingamsangalatse. Ndinabwerera mwamsanga ku thupi lake laling'ono lopweteka, ndipo ndinamvetsera anamwino akunena momwe Eurydice anali "chisangalalo" chawo.N’kutheka kuti moyo wake wamakono ndi umene umakhudza kwambiri anthu amene anazoloŵera kukhulupirira zinthu zakale kapena malonjezo a m’tsogolo. Eurydice, kumbali ina, adawona nthawiyo, adakondwera. Chifuniro chabwino, kuthekera kwa chisangalalo ndi chifundo, izi ndi zomwe mwana wanga wamkazi wapatsidwa mphatso. Ndipo palibe wanthanthi, ngakhale pakati pa amene ndakhala ndikuwasirira, amene angapikisane naye m’derali. Aŵirife tinachitapo kanthu kuti titsekeredwe kwa miyezi isanu ndi iŵiri m’chipinda chachipatala chimenechi ndi kupirira phokoso la makinawo. Ndinalingalira momwe ndingasangalatse mwana wanga, ndikumaseweretsa zinsinsi ndi mabakiteriya omwe ayenera kukhala kutali nawo. Titakhala pafupi ndi zenera, tinalankhula ndi thambo, mitengo, magalimoto, ndi matope. Tinathawa m’chipinda choyera cha linono chija m’maganizo. Unali umboni wakuti kuganiza pamodzi sikunali kosatheka…Kufikira tsiku lomwe tinatha kutuluka, kuthamangira kumalo opanda anthu oyandikana nawo ndikulawa dziko lapansi ndi zala zathu. Khansara inali itapita ngakhale idatsala kuti iwonedwe.

Tinabwerera ku Paris. Kuterako sikunali kophweka. Titafika, woyang’anira nyumbayo anandigwetsera pansi. Ataona kuti ali ndi zaka ziwiri ndi theka, Eurydice anali asanagwire ntchito, anandiuza kuti ndimuike kusukulu ina yapadera. Mwamsanga pambuyo pake, pamene ndinali kusonkhanitsa fayiloyo pofuna kuti chilema chake chizindikirike, chikwama changa chinabedwa. Ndinali wosimidwa koma masabata angapo pambuyo pake, pamene sindinathe kutumiza fayiloyi popeza idabedwa kwa ine, ndinalandira kuvomereza. Wakubayo ndiye adanditumizira fayiloyo. Ndinatenga chizindikiro ichi ngati mphatso. Eurydice wanga wamng'ono adadikirira mpaka zaka 2 kuti ayende, ndipo wa 3 kundiuza kuti ndimakukondani. Pamene anali atangovulaza dzanja lake ndipo ndinali kufulumira kulimanga bandeji, iye analeka: Ndimakukondani. Kukoma kwake koyenda komanso kusuntha kwake nthawi zina kumapangitsa kuti azitha kuchita zinthu zoopsa kapena kuthawa, koma ndimamupeza nthawi zonse kumapeto kwa ma fugue osangalatsa awa. Kodi izi ndi zomwe akufuna, pansi pamtima, kuyanjananso kwathu?

Sukulu inali ketulo ina ya nsomba, chifukwa kupeza malo “okwanira” kunali kovuta.Mwana wanga wolumala analibe malo kulikonse mpaka, mwamwayi, ndinapeza sukulu yomwe inavomereza izo ndi situdiyo yaing'ono yomwe inali kutali ndi kumene tinkatha kukhalamo zikondwerero zathu ziŵiri. Ndiye kunali koyenera kuyang'anizana ndi imfa ya abambo anga ndipo apo kachiwiri, Eurydice anandiwonetsa njira, ndikumvetsera kuwerengera komwe ndinamupangira "Pinocchio" buku limene bambo anga akanakonda kukhala ndi nthawi yomuwerengera. Pinocchio ankafuna kukhala mnyamata wamng'ono ngati enawo ndipo anakhala choncho kumapeto kwa moyo wake, koma moyo wake umene umanenedwa ndi wa kusiyana kwake. Mwana wanga wamkazi nayenso ali ndi nkhani yoti anene. Ma chromosome ake owonjezera sanatichotsere kalikonse. Zinandipangitsa kuganiza bwino, kukonda bwino, kuyenda mofulumira. Ndikuthokoza kwa iye, ndili wotsimikiza za izi: "Mwayi ndizomwe timapanga tikasiya kuyembekezera kuti zitimwetulire, tikasiya chikhulupiriro ichi, cholimbikitsa mpaka kumapeto. mankhwala oletsa ululu, malinga ndi zomwe zabwino zikubwera ”. “