Oko Ukwamkela Intombi yam ngeCerebral Palsy Wandifundisa Ngokuqina

Umxholo

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Ukuhamba ngoChristina Smallwood

Uninzi lwabantu alwazi ukuba banokukhulelwa bade bazame. Ndifunde ukuba indlela enzima.

Xa mna nomyeni wam saqala ukucinga ngokuba nomntwana, asizange sicinge ukuba kunokuba nzima kangakanani na. Kwadlula unyaka kungekho thamsanqa, yaye ngoDisemba 2012, intsapho yakowethu yehlelwa yintlekele.

Utata wam ufumene ingozi yesithuthuthu kwaye waphela equlekile iiveki ezine ngaphambi kokuba asweleke. Ukuthi bendothukile ngokwasemzimbeni nangokweemvakalelo yinto ephantsi. Kuyaqondakala ukuba, kwaqengqeleka iinyanga ngaphambi kokuba sibe namandla okuzama ukuba nomntwana kwakhona. Ngaphambi kokuba sazi, uMatshi wajikeleza, kwaye ekugqibeleni sagqiba ekubeni kuvavanywe ukuzala kwethu. (Inxulumene: Yintoni i-Ob-Gyns enqwenela ukuba abantu basetyhini bazi malunga nokuchuma kwabo)

Iziphumo zabuya emva kweeveki ezimbalwa, kwaye oogqirha bandixelela ukuba inqanaba lam le-anti-Müllerian hormone laliphantsi kakhulu, sisiphumo esibi sokuthatha iAccutane, endandiyithathe xa ndandikwishumi elivisayo. Amanqanaba asezantsi kakhulu ale hormone ibalulekileyo yokuzala kwathetha ukuba andinamaqanda aneleyo kwiziyi-maqanda zam, nto leyo eyenza ukuba kube nzima ukuba ndikhawule ngokwemvelo. Emva kokuthatha ixesha ukuba siphume kobo buhlungu bentliziyo, senze isigqibo sokwamkela.

Emva kweenyanga eziliqela neetoni zamaphepha nodliwano-ndlebe, ekugqibeleni safumana isibini esasinomdla kuthi njengabazali abasikhulisayo. Kungekudala emva kokuba sidibene nabo, basixelela ukuba mna nomyeni wam sasiza kuba ngabazali bentombazana encinane kwiinyanga nje ezimbalwa. Uvuyo, uchulumanco, kunye nezikhukhula zezinye iimvakalelo esasiziva ngaloo maxesha zazingaphezulu.

Kwiveki nje emva kokuba kuqeshwe iiveki ezingama-30 kunye nomama wokuzalwa, waya kusebenza ngaphambi kwexesha. Ndithe xa ndifumana umbhalo othi intombi yam yazalwa, ndaziva ngathi ndoyisakala kakade njengomama kuba ndiyikhumbula.

Saleqa esibhedlele kwaye kwadlula iiyure ngaphambi kokuba simbone. Kwakukho amaphepha amaninzi, "i-red tape," kunye ne-roller coaster yeemvakalelo, kangangokuba ngexesha ndingena egumbini, ndaqonda ukuba andizange ndilifumane ithuba lokucinga ngokuzalwa kwakhe kwangaphambi kwexesha. Kodwa okwesibini ndibeke amehlo am kuye, into ebendifuna ukuyenza kukumgona ndimxelele ukuba ndizokwenza konke okusemandleni am ukuqinisekisa ukuba uphila ubomi obungcono.

Uxanduva lokugcina eso sithembiso lwacaca ngakumbi xa kwiintsuku nje ezimbini emva kokuzalwa kwakhe sabuliswa liqela leengcali ze-neurologists lisithi bafumene ukungalunganga okuncinci kwingqondo yakhe ngexesha le-ultrasound yesiqhelo. Oogqirha bakhe babengaqinisekanga ukuba ingangaba yinto ezakukhathaza ngayo, kodwa bebeza kubeka iliso kuzo zonke iiyure ezimbalwa ukuze baqiniseke. Kulapho ubukho bakhe bangaphambi kwexesha baqala ukusibetha. Kodwa nangona zonke iingxaki zethu zocwangciso lwentsapho kunye nobunzima esibhedlele, andizange ndicinge nakanye, "Oh. Mhlawumbi asifanele senze oku." Kungelo xesha ke apho sagqiba kwelokuba simthiye igama elinguFinley, elithetha "umkhosi olungileyo."

Ekugqibeleni, sakwazi ukuzisa uFinley ekhaya, singazi ncam ukuba ukwenzakala kwakhe kwengqondo kuthetha ntoni kwimpilo yakhe nakwikamva lakhe. Kwada kwaba lixesha lokuqeshwa kwakhe kwiinyanga ezili-15 ngo-2014 apho wafunyaniswa ukuba une-spastic diplegia cerebral palsy. Imeko ichaphazela kakhulu umzimba ophantsi, kwaye oogqirha babonisa ukuba uFinley akanakuze akwazi ukuzihambela.

Njengomama, ndandisoloko ndicinga ngokuleqa umntwana wam endlwini, kwaye kwakubuhlungu ukucinga ukuba ayizukwenzeka. Kodwa umyeni wam kwaye bendisoloko ndinethemba lokuba intombi yethu iyakuphila ubomi obugcweleyo, ke sizakulandela ukhokelo lwakhe kwaye somelele kuye. (Eyeleleneyo: I-Hashtag ye-Twitter ehamba phambili ixhobisa abantu abakhubazekileyo)

Kodwa kanye njengokuba sasiqonda ukuba kuthetha ntoni ukuba nomntwana "oneemfuno ezizodwa" kwaye sisebenze ngotshintsho ekufuneka silwenzile kubomi bethu, umama womyeni wam kwafunyaniswa ukuba unomhlaza wobuchopho kwaye ekugqibeleni wasweleka.

Apho saphinda sachitha-ukuchitha uninzi lweentsuku zethu kumagumbi okulinda. Phakathi kotata, uFinley, kunye nomamazala wam, ndaziva ngathi ndihlala kweso sibhedlele kwaye andinakukwazi ukubamba ikhefu. Kwakuxa ndandikwindawo emnyama apho ndaye ndagqiba kwelokuba ndiqale ukubhloga malunga namava am ngeFifi + Mo, ukuba ndikhuphe kwaye ndikhulule zonke iintlungu kunye nokudana endikuvayo. Bendinethemba lokuba mhlawumbi, nje ingayiyo, omnye umntu wayefunda ibali lam aze afumane amandla nentuthuzelo kukwazi ukuba babengebodwa. Kwaye ngembuyekezo, mhlawumbi nam ndingenza njalo. (Idibene: Ingcebiso yokufumana ezinye zoTshintsho olukhulu kuBomi)

Malunga nonyaka odlulileyo, seva iindaba ezimnandi okokuqala kwixesha elide xa oogqirha basixelela ukuba uFinley uza kwenza umviwa ogqwesileyo wotyando olukhethiweyo lwe-dorsal rhizotomy (SDR), inkqubo ekufanele ukuba ubomi butshintsha yabantwana abane-CP spastic. Ngaphandle, ngokuqinisekileyo, kwakukho ukubanjiswa. Utyando lubiza i-50, 000 yeedola, kwaye i-inshurensi ayiyigubungeli.

Ngeblogi yam ifumana amandla, sagqiba ekubeni senze #daretodancechallenge kumajelo asekuhlaleni ukuze sibone ukuba ingabakhuthaza abantu ukuba banikele ngemali ebesiyifuna ngamandla. Ekuqaleni, ndandicinga ukuba kwanokuba ndandinokwenza amalungu entsapho nabahlobo babe nenxaxheba, oko kuya kuba kuhle. Kodwa ndandingenalo nofifi lokuba iza kuphumelela kwezi veki zimbalwa zizayo. Ekugqibeleni, siphakamise malunga ne-60,000 yeedola kwiinyanga ezimbini, eyayanele ukuhlawulela utyando lukaFinley kunye nokunyamekela iindleko eziyimfuneko zokuhamba kunye nezinye iindleko.

Ukusukela ngoko, uye wafumana unyango lwe-stem evunyiweyo ye-FDA emvumele ukuba ajike iinzwane zakhe-phambi kotyando kunye nolu nyango, akaba nakho kwaphela. Uye wasandisa isigama sakhe, wakrwela iindawo zomzimba wakhe angazange azenze ngaphambili, umahluko phakathi kwento "eyenzakalisayo" kunye "nokurhawuzelela." Kwaye okona kubalulekileyo, nguye ukubaleka engenazimbadada ekuhambeni kwakhe. Yonke into intle kakhulu kwaye iyakhuthaza ngakumbi ukubona uncumo lwakhe kunye nokuhleka ngeyona nto inokuba lelona xesha linzima nelinzima ebomini bakhe.

Njengokuba besigxile ekudaleni ubomi obulungileyo kuFinley, wenze okufanayo nakuthi. Ndinombulelo ongazenzisiyo ngokuba ngumama wakhe, kwaye ukubukela umntwana wam oneemfuno ezikhethekileyo ephumelela kundibonisa oko kuthethwa kukomelela.

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