Ibhulogi yakamuva Ukuba Umzali Kunzima isilungele ukufundwa ku-inthanethi lapha https://www.fireflyfriends.com/uk/blog/being-a-parent-is-hard/Ukuba umzali kunzima. Impela kunzima. Kuyilungelo eliphelele kodwa masikhulume iqiniso lapha; kunzima.Anginaso isipiliyoni sokukhulisa ingane ene-neurotypical noma eqinile. Okuhlangenwe nakho kwami kokuba umzali kufana nokufana, kodwa futhi kuhluke kakhulu.Izinselelo eziningi abazali bezingane eziphathelene nemizwa ababhekana nazo zizogcina sezikhulile (ngethemba). Kithina akukhona nje “ababili ababi” noma “ukusungula isimiso esihle sokulala”.Akukho ukubiza umzanyana lapho sidinga ikhefu, akulula kanjalo. Manje angizibukeli phansi nakancane izinselelo bonke abazali ababhekana nazo; Iphuzu lami lapha ukugqamisa ukuthi izinto eziningi odonsa kanzima ngazo mayelana nezingane noma ezisacathula, zizoqhubeka nasebuntwaneni, ubusha (uma kuyizwi lelo), futhi ngempela, abantu abadala.Njengoba ingane ikhula ingaba namandla, izwakale kakhulu, ibe yingozi kakhulu kuyona nakulabo abaseduze kwayo.Ngokujabulisayo ngathi, ukukhungatheka kuka-Amy / ukukhala kwakhe kungcono kakhulu kunaseminyakeni embalwa edlule, nokho namuhla ngisathuthumela ngokomzwelo nangokomzimba ngesikhathi sokulala izolo ebusuku.U-Amy uneminyaka engu-8 manje. Une-quadriplegic cerebral palsy enzima kakhulu. Nsuku zonke ulwa nemiphumela emibi esabekayo yemithi embalwa, ulawula ubuhlungu obengeziwe kulabo abaseduze kwakhe, futhi kufanele azenze azwakale futhi aqondwe ngaphandle kokuhamba noma ukukhuluma.Ngiye ngizibuze izinga lokuzihlukanisa nokukhungatheka angase abe nakho. Ngisho namagqubu.Ngiwumphefumulo ozwela kakhulu futhi ngivikela ngokujulile u-Amy. Ngiyazi ukuthi akulona iqiniso, kodwa ngifuna ukuthi sonke isikhathi sempilo yakhe sibe esimangalisayo, sijabule futhi sigcwale uthando. Ngiye ngahlakulela uzwela olukhulu, uzwelo futhi okubaluleke kakhulu ukubekezela, ngenxa “yezinkinga” zakhe. (Anginaso isiqiniseko sokuthi ukuwohloka kuyigama manje. Ingabe inkinga? Kunoma ikuphi, inkathi yokucindezeleka okukhulu.)Izolo ebusuku konke lokho kuphume ngefasitela.Njengezingane eziningi, ziyakwazi ukucisha izinkinobho zabazali bazo. Ngiyazi ukuthi ngingaba novalo oluncane ngiseyingane futhi ngibheke emuva ezenzweni zami (ikakhulukazi lapho ngisemusha) nginamahloni futhi ngizisola. Nokho uma u-Amy enesinye salezi ziqephu, akazi ukuthi ucindezela izinkinobho. Ngaleso sikhathi usuke esesemseni wanoma yini ubuchopho obumfaka kuyo.Ngathi ngisathi ngiyalala ngabona ulaka lugcwala phezu kwakhe. Wadliwa yikho.Wayeshaya, ekhahlela, edazuluka, ezama ukuklebhula izinwele zakhe.Ongakwenza ngaleso sikhathi ukuzama ukugcina wonke umuntu ephephile futhi uqhubeke nokuphefumula. Zikhumbuze ukuthi lokhu kuzodlula. Zikhumbuze ukuthi lokhu akumayelana nawe, kumayelana naye. Uyazabalaza njengamanje futhi udinga ukwesekwa nguwe.Ekugcineni waphelelwa umoya, ephefumula ngokushesha, ehlehla, futhi waba nenhliziyo eshaya ngamandla.Imizwa yami engokwemvelo yangitshela ukuthi ngihlole ama-ketones egazi lakhe kanye ne-glucose njengoba ngaphambili eke wasabela ku-ketoacidosis ngendlela efanayo, futhi uma bekunjalo --ke kuyisimo esiphuthumayo sezokwelapha.Ngathi ngizama ukumthulisa ngibheka igazi lakhe waswayipha iphinifa lomunwe esandleni sami inaliti yasigqekeza isandla sami. Igazi lalihamba yonke indawo. Ngatatazela ngifuna ithishu kodwa ngingafuni ukuzifaka engozini yokuwa embhedeni wakhe.Umzamo wami wesibili - wakhahlela i-lancet esandleni sami okusho ukuthi kwakukhona inaliti exegayo embhedeni wakhe. Ngesikhathi ngizama ukuthola inaliti elahlekile wangikhahlela ebusweni kwabangela udebe olukhuluphele.Lapho imizwa ka-Amy inamandla ukuphazamiseka kwakhe kokunyakaza kushintsha igiya futhi umzuzu owodwa ongagxilile uzosho ukopha ekhaleni.Ngalesi sikhathi ngangizizwa nginokwesaba, ngicasukile, futhi ngicasukile ngokungananazi.Ngimmemeze alale. Ulaka lwakhula. Ngacindezela izinyembezi ngazitshela ukuthi ngehlise umoya.Ekugcineni ngangidinga ukumnika i-chloral hydrate ukuze ngimthulise. Kuyisinqumo engingasithathi kalula futhi ngisisebenzisa ezimweni ezibucayi kuphela.Kwaphela izinsuku ngizizwa ngicasukile futhi nginecala ngakho futhi ngidinga ukuqinisekiswa njalo ukuthi ngangingenakho ukukhetha nokuthi ukumshiya ecindezelekile akulungile.Ekuseni nje uvuke ejabule engathi akukaze kwenzeke lutho.Ukukhululeka kuyabonakala. Ibuyile intombi yami enhle ejabule. Imithi yasekuseni iyakhahlela futhi uyozela. Ngithemba ukuthi ukumamatheka kuzobuya kamuva.Nanamuhla ngisathwele ingcindezi. Ngiwuzwa umzimba wonke. Ngifisa sengathi ngabe ngehlise umoya. Angikaze ngimthethise. Akusizi isimo esicindezelayo. Kodwa ngiyazi ukuthi ngokuvamile lokhu kwenzeka kumzali lapho edudulwa.Ngizizwa kabi manje. Icala elifanele likaMama.Ngikhathazekile uma lokhu kuzokwenzeka ingunaphakade ngokungahleliwe. Kwenzeka njalo nje kodwa uma ingishaya izikhathi eziyisithupha.Nganginesikhathi esithile sokuphumula ngakho ngakwazi ukugxusha endaweni yokuhamba ngezinja kanye neseshini yokuzivocavoca. Nami ngangingafuni kodwa ngangidinga lawo mahomoni okucindezeleka ukuthi ehle. Ngizizwa ngingcono manje kunangaphambili.Manje ngigxile ekuhlaleni ngiphazamisekile, ngihlale nginethemba, futhi ngisebenzela ukuba umzali ongcono kulobubusuku. Ngamtshela ukuthi ngiyaxolisa futhi ngamtshela ukuthi ngimthanda kangakanani. Wavele wamamatheka wahleka wangithinta ehlombe.Ngicabanga ukuthi inhloso yale bhulogi ukusho ukuthi - kulungile ukunyakazisa.Kulungile ukuzabalaza. Wenza konke okusemandleni akho futhi awukwazi ukuphelela 100% wesikhathi. Namuhla usuku olusha kakhulu futhi kungakhathaliseki ukuthi u-Amy ubuya esikoleni namuhla ngizojabula kakhulu ukumbona.Uma unenkinga efanayo - sicela ungahlupheki wedwa.Uma impilo yakho yengqondo ithikamezeka qiniseka ukuthi ufika kudokotela futhi ubone ukuthi yiluphi usizo olutholakalayo.Ungaba umhlabeleli wakho kuphela uma uzibheka wena. Ngiyazi ukuthi kulula ukukusho kunokukwenza, kodwa kubaluleke kakhulu.Okuthunyelwe Ukuba Umzali Kunzima kwavela kuqala ku-Firefly Blog.************ https://www.fireflyfriends.com/uk/blog/special-needs/,https://www.fireflyfriends.com/uk/blog/special-needs/advice -support/,https://www.fireflyfriends.com/uk/blog/special-needs/disabilities/
