Lokho Okwamukela Indodakazi Yami Ngokukhubazeka Kobuchopho Kungifundise Ukuba Namandla

-Delile

• Buyekeza kwe-

Nge-Christina Smallwood

Abantu abaningi abazi ukuthi bangakwazi yini ukukhulelwa baze bazame ngempela. Ngakufunda kabuhlungu lokho.

Lapho mina nomyeni wami siqala ukucabanga ngokuba nengane, asikaze sicabange ukuthi kungaba nzima kanjani empeleni. Kwadlula isikhathi esingaphezu konyaka kungekho nhlanhla, kwathi ngoDisemba ka-2012, kwehla usizi emndenini wakithi.

Ubaba waba sengozini yesithuthuthu futhi wagcina equlekile amasonto amane ngaphambi kokushona. Ukusho ukuthi ngangithukile ngokomzimba nangokomzwelo kuyinto engasho lutho. Kuyaqondakala ukuthi kwadlula izinyanga ngaphambi kokuba sibe namandla okuzama ukuthola umntwana futhi. Ngaphambi kokuba sazi, uMashi wajikeleza, futhi ekugcineni sanquma ukuthi ukuvivinya kwethu amandla. (Okuhlobene: Yini u-Ob-Gyns Afisa Abesifazane Babekwazi Ngokuzala Kwabo)

Imiphumela yabuya emasontweni ambalwa kamuva, futhi odokotela bangitshela ukuthi izinga lami le-anti-Müllerian laliphansi kakhulu, umphumela ojwayelekile wokuthatha i-Accutane, engangiyithathe ngisemusha. Amazinga aphansi kakhulu ale hormone ebalulekile yokuzala futhi asho ukuthi ngangingenawo amaqanda anele kumaqanda ami, okwenza kwaba cishe ngingakwazi ukukhulelwa ngokwemvelo. Ngemva kokuthatha isikhathi eside ukuqeda lokho buhlungu benhliziyo, senza isinqumo sokuthatha.

Ngemuva kwezinyanga ezimbalwa namathani wezincwadi kanye nezingxoxo, ekugcineni sathola izithandani ezazinesithakazelo kithi njengabazali bokutholwa. Ngokushesha nje ngemva kokuba sihlangane nabo, batshela mina nomyeni wami ukuthi sizoba abazali bentombazanyana ezinyangeni ezimbalwa nje. Injabulo, isasasa, kanye nezikhukhula zeminye imizwa esasizwa ngalezo zikhathi kwakungeyona into engokoqobo.

Ngemuva nje kwesonto ngemuva kokuqokwa kwethu kwamasonto angama-30 nomama ongizalayo, waqala ukusebenza ngaphambi kwesikhathi. Lapho ngithola umbhalo othi indodakazi yami yazalwa, ngezwa sengathi ngangivele ngifeyile njengomama ngoba ngangikukhumbula.

Saphuthuma esibhedlela kwase kusele amahora ukuthi simbone. Kwakukhona amaphepha amaningi, "i-red tape," kanye ne-roller coaster yemizwa, kangangokuthi ngesikhathi ngingena ekamelweni, ngabona ukuthi angizange ngilithole ithuba lokucabanga ngempela ngokuzalwa kwakhe ngaphambi kwesikhathi. Kodwa okwesibili ngabeka amehlo ami kuye, engangifuna ukukwenza nje ukumgona futhi ngimtshele ukuthi ngangizokwenza konke okusemandleni ami ukuqinisekisa ukuthi unempilo engcono kakhulu.

Isibopho sokugcina leso sithembiso sacaca kakhulu lapho ezinsukwini ezimbili nje emva kokuzalwa kwakhe sabingelelwa yithimba lodokotela bezinzwa bethi bathole iphutha elincane ebuchosheni bakhe ngesikhathi se-ultrasound ejwayelekile. Odokotela bakhe babengenaso isiqiniseko sokuthi izophenduka yini into abazikhathaza ngayo, kodwa babezoyiqapha njalo emahoreni ambalwa ukuze baqiniseke. Kungaleso sikhathi-ke lapho kuqala ukukhulelwa kwakhe kuqala ukusishaya. Kodwa naphezu kwazo zonke izithiyo zethu zokuhlela umndeni nobunzima esibhedlela, angikaze nakanye ngicabange, "Oh. Mhlawumbe akufanele sikwenze lokhu." Kungaleso sikhathi lapho sanquma ukumqamba igama elithi Finley, okusho ukuthi "iqhawe eliqotho."

Ekugcineni, sakwazi ukuletha uFinley ekhaya, singazi ngempela ukuthi ukulimala kwakhe ebuchosheni kusho ukuthini ngempilo yakhe nekusasa lakhe. Kuze kwaba ukuqokwa kwakhe izinyanga eziyishumi nanhlanu ngo-2014 lapho ekugcineni atholakale enesifo se-spastic diplegia cerebral palsy. Lesi simo sithinta kakhulu umzimba ongezansi, kanti odokotela bakhombise ukuthi uFinley akasoze akwazi ukuzihambela.

Njengomama, ngangihlale ngicabanga ukuxosha ingane yami endlini ngolunye usuku, futhi kwakubuhlungu ukucabanga ukuthi lokho kwakungeke kube ngokoqobo. Kodwa mina nomyeni wami sasihlale sinethemba lokuthi indodakazi yethu yayizophila ukuphila okugcwele, ngakho sasizolandela ukuhola kwayo futhi siqine ngenxa yayo. (Okuhlobene: I-Twitter Hashtag Ethrendayo Inika Amandla Abantu Abakhubazekile)

Kodwa njengoba sasiqala ukuqonda ukuthi kusho ukuthini ukuba nengane “enezidingo ezikhethekile” futhi sibhekane nezinguquko okwakuzodingeka sizenze ekuphileni kwethu, umama womyeni wami kwatholakala ukuthi unomdlavuza wobuchopho futhi wagcina ngokushona.

Lapho sase siphinde sachitha isikhathi esiningi sezinsuku zethu ezindlini zokulinda. Phakathi kukababa wami, uFinley, kanye nomamezala wami, ngangizizwa sengathi ngihlala kuleso sibhedlela futhi angikwazanga ukubamba ukuphumula. Kwaba ngenkathi ngikuleyo ndawo emnyama lapho nganquma ukuqala ukubhuloga mayelana nolwazi lwami nge-Fifi+Mo, ukuze ngibe ne-outlet futhi ngikhulule bonke ubuhlungu nokukhungatheka engangikuzwa. Ngethemba ukuthi mhlawumbe, nje kungenzeka, omunye umuntu wayefunda indaba yami futhi athole amandla nenduduzo ngokwazi ukuthi babengebodwa. Futhi ngokubuyisela, mhlawumbe nami ngingathanda. (Okuhlobene: Iseluleko sokuthola ezinye zezinguquko ezinkulu empilweni)

Esikhathini esingangonyaka esidlule, sezwa izindaba ezinhle okokuqala ngqa esikhathini eside lapho odokotela besitshela ukuthi uFinley uzokwenza ikhandidethi elihle kakhulu lokuhlinzwa kwe-selective dorsal rhizotomy (SDR), inqubo okufanele yenziwe. impilo iyashintsha izingane ezine-CP spastic. Ngaphandle, kunjalo, kwakukhona ukubamba. Ukuhlinzwa kubiza u- $ 50,000, futhi umshwalense awukumbozi.

Njengoba ibhulogi yami idlondlobala, sanquma ukwakha i-#daretodancechallenge ezinkundleni zokuxhumana ukuze sibone ukuthi ingabe ingase ikhuthaze abantu ukuthi banikele ngemali ebesiyidinga kakhulu. Ekuqaleni, ngangicabanga ukuthi noma ngingathola amalungu omndeni nabangane ukuthi babambe iqhaza, lokho kungaba kuhle. Kepha bengingazi ukuthi umfutho ozowuthola emasontweni ambalwa alandelayo. Ekugcineni, sakhulisa cishe ama- $ 60,000 ezinyangeni ezimbili, okwakwanele ukukhokhela ukuhlinzekwa kukaFinley nokunakekela izindleko zokuhamba ezidingekayo nezengeziwe.

Kusukela lapho, ubuye wathola ukwelashwa kwe-stem cell evunyiwe yi-FDA emvumele ukuba azungeze izinzwane zakhe-ngaphambi kokuhlinzwa nalokhu kwelashwa, akakwazanga ukuzihambisa nhlobo. Uphinde wandise amagama akhe, waklwebha izingxenye zomzimba wakhe angakaze azenze phambilini, ehlukanisa phakathi kokuthile "okulimazayo" kanye "nokulunywa." Futhi okubaluleke kakhulu, unjalo egijima engafake zicathulo ku-walker yakhe. Konke kuhle kakhulu futhi kuyakhuthaza kakhulu ukubona ukumamatheka kwakhe nokuhleka lapho kungaba yizikhathi ezinzima kakhulu nezinselele empilweni yakhe.

Njengoba besigxile kakhulu ekwakheni impilo enhle kaFinley, wenze okufanayo nakithi. Ngijabula kakhulu ukuba ngumama wakhe, futhi ukubukela ingane yami enezidingo ezikhethekile ichuma kungikhombisa ukuthi kusho ukuthini ngempela ukuba namandla.

Buyekeza kwe-