Izwi Elizwakala Buthule

NGABELETHA indodakazi yami uHillary ngemva kokukhulelwa nje okuvamile. Yayibonakala ingumqemane, kodwa udokotela wathola ukuthi inolwanga oluklayekile. Wathi lolu hlobo lokuklayeka engxenyeni ethambile yolwanga ngokuvamile lulungiseka kalula ngokuhlinza umntwana lapho eseneminyaka emibili. Okuwukuphela kwenkinga eyayibonakala ikhona ngaleso sikhathi ukuthi yayingakwazi ukuncela kahle. Njengoba ingxenye yolwanga yayingekho, yayingakwazi ukumunca ubisi.

Phakathi nezinyanga ezintathu zokuqala, uHillary kwakudingeka afunzwe. Khona-ke lapho esenezinyanga ezine, wafunda ukuvala amakhala ukuze ancele. Lokhu kwakumsiza ukuba akwazi ukuncela. Yeka impumuzo lokho okwaba yiyo! Ngokushesha uHillary waqala ukukhuluphala, futhi yonke into yayibonakala ihamba kahle. Wayekwazi ukubamba izinto ngezandla, ekwazi nokwenza imisinjwana yabantwana, futhi wafunda nokuhlala.

Ukuvela Kwezimpawu Ezingaqondakali

Lapho sekuyisikhathi sokuba uHillary akhase, wayengafuni nhlobo. Ngokwesibonelo, kunokuba akhase ngezandla nangamadolo, wayehlala abese eshishiliza ngezinqe. Lokhu kwakungimangaza ngoba kwakuhluke kakhulu kulokho indodakazi yami endala uLori, eyakwenza lapho isengangaye. Lapho ngikhuluma nabanye omama, ngathola ukuthi zikhona nezinye izingane eziphile kahle ezingakhasi. Ngemva kokuzwa lokho, angibange ngisakhathazeka kakhulu ngendlela uHillary ayenza ngayo.

Lapho esezoqeda unyaka wakhe wokuqala, uHillary wayesefunde ukukhuluma amagama ambalwa kuphela. Lokhu kwabonakala kungajwayelekile; kodwa abantwana abafani, futhi ukufunda ukukhuluma kungathatha isikhathi eside kwabathile kunakwabanye. Futhi uHillary wayengenzi mzamo wokuhamba noma wokuma ngezinyawo. Ngamyisa kudokotela wezingane, owathi lokhu kubangelwa ukuthi unezinyawo eziyisicaba ngaphansi. Phakathi nezinyanga ezalandela, wayesalokhu engawenzi umzamo wokusukuma.

Sabuyela kudokotela futhi, kulokhu wathi uHillary uyivila. Lapho esenezinyanga ezingu-18, wayengakakwazi ukuhamba futhi eseyekile nokukhuluma lawo magama ambalwa eyesewafundile. Ngashayela udokotela ucingo ngamtshela ukuthi kunokuthile okungahambi kahle ngendodakazi yami. Sahlela ukubonana nodokotela wezinzwa. Wahlela ukuba axilongwe ngezindlela ezihlukahlukene, kuhlanganise ne-electroencephalogram (EEG), esiza odokotela ukuba bahlaziye ukusebenza kobuchopho. I-EEG yabonisa ukuthi uba neziqubu zokuquleka. Lo dokotela wabuye wathi unezinye izimpawu ezihlanganisa amabala ansundu esikhunjeni, kanye nezinye izici zamehlo ngokuvamile ezihambisana nokuphazamiseka kwezinzwa. Kwacaca ukuthi kunokuthile okungahambi kahle ngoHillary, kodwa lo dokotela wayengakwazi ukuchaza ukuthi kuyini.

Nakuba ukuhlola kwakubonise ukuthi uHillary wayequleka, kodwa thina sasingakaze simbone equlekile. Kodwa kwakunezinye izinkinga ezisobala. Wayekhala angathuli cishe nsuku zonke. Into eyayisiza ekumthuliseni ukuhamba naye ngemoto simculele sizungeze indawo esihlala kuyo. Sasizungeza naye kaningi kangangokuthi abanye omakhelwane baze basibuza ukuthi kungani sasilokhu sehla senyuka ngasemzini yabo!

Phakathi nonyaka wakhe wesibili, uHillary waqala ukunyakazisa izandla ngendlela engavamile—elokhu eziyisa emlonyeni engayeki. Waze wafinyelela ezingeni lapho lokhu ayekwenza engayeki uma engalele. Kwaba nezikhathi lapho ayengasalali nhlobo. Ngezinye izikhathi wayethatha isihlwathi ntambama kodwa angalali ubusuku bonke.

UHillary wayewuthanda umculo. Wayebuka izinhlelo zomculo zezingane kuthelevishini amahora amaningi. Kodwa izinkinga zakhe zezinzwa zaya ngokuya zanda. Waqala ukuphefumula ngendlela engavamile, ephelelwa umoya noma avele awubambe. Ngezinye izikhathi wayebamba umoya izindebe zakhe zize zibe nsomi. Kwakwethusa ngempela lokho.

Sazama imithi ethile yokuqeda ukuquleka, kodwa kwabonakala sengathi idala ezinye izinkinga. Kusukela lapho sazama izindlela ezihlukahlukene zokwelapha—saya kwabanye odokotela, kwenziwa ukuxilonga okwengeziwe, sazama izindlela zokwelapha ezivamile namakhambi, kanye nodokotela abachwepheshile ezifweni ezithile. Asizange sihlonzwe lesi sifo, ingasaphathwa eyokuselapha.

Inkinga Engaqondakali Iyaxazululwa Ekugcineni

Lapho uHillary eseneminyaka engaba mihlanu, umngane wami omkhulu wafunda isihloko esithile ephephandabeni langakubo esasikhuluma ngentombazane enesifo sofuzo esingaziwa kahle okuthiwa i-Rett syndrome (RS). Wayazi ukuthi uHillary unezimpawu ezifanayo, ngakho wangithumelela leso sihloko.

Sinalolu lwazi olusha, saya kudokotela wezinzwa ohlukile—owayechwepheshile kulo mkhakha. Ekuqaleni kwawo-1990, abacwaningi babeqiniseka cishe ngokuphelele ukuthi i-RS iyisifo sofuzo ngenxa yokuthi yayitholakale ngokuyinhloko ezinganeni ezingamantombazane. Kodwa isakhi sofuzo esibangela lesi sifo sasingakatholakali, futhi izimpawu zaso eziningi zifana neze-autism noma i-cerebral palsy. Ngakho i-RS kwakufanele ihlonzwe ngezimpawu zayo. UHillary wayenazo cishe zonke lezo zimpawu. Udokotela wezinzwa waqinisekisa ukuthi ngempela kwakuyi-RS.

Ngaqala ukufunda konke engangingakuthola ngalesi sifo, ngaleso sikhathi okwakungekuningi. Ngafunda ukuthi i-RS itholakala osaneni olulodwa kwezingu-10 000 kuya kwezingu-15 000 ezingamantombazane futhi alikho ikhambi layo elaziwayo noma indlela ethile yokuyelapha. Kukhona nokuthile engangingeke ngithande ukukwazi—ngathola ukuthi amantombazane ambalwa ane-Rett syndrome afa ngendlela engachazeki. Kodwa kunokuthile engakufunda okwangenza ngakhululeka ngandlela-thile. Ake ngichaze. Ukukhubazeka okuyinhloko okubangelwa i-RS kuthiwa i-apraxia. I-Rett Syndrome Handbook iyichaza ngale ndlela: “I-apraxia iwukwehluleka ukuvumelanisa ukucabanga nokunyakaza komzimba. Iwukukhubazeka okuyinhloko okubonakala kuyi-RS, futhi ithinta konke ukunyakaza komzimba, kuhlanganise nokukhuluma nokubheka kwamehlo. Nakuba intombazane ene-Rett syndrome ikwazi ukuwunyakazisa umzimba, iyahluleka ukuwutshela ukuthi unyakaze kanjani futhi nini. Ingase ifise futhi ifune ukunyakaza, kodwa ihluleke ukwenza kanjalo.”

Kungani kwangikhulula ukwazi lokhu? Kungenxa yokuthi i-apraxia ayikuphazamisi ukuhlakanipha komuntu; empeleni, iyakufihla ngoba yenza kungabi nendlela yokukhulumisana. Ngangilokhu nginomuzwa wokuthi uHillary ukwazi konke okuqhubekayo, kodwa ngenxa yokuthi yayingekho indlela yokukhulumisana ngangingenakukwazi ngokuqinisekile.

Ngenxa yokuthi i-apraxia iphazamisa ukunyakaza nokukhuluma, uHillary wayengasakwazi ukuhamba nokukhuluma. Amantombazane amaningi ane-RS ananenkinga yokuquleka, ukugobeka komhlandla, ukuququda amazinyo nezinye izinkinga zomzimba. NoHillary wayenjalo.

Ithemba Eliqinisekile

Muva nje kutholakale isakhi sofuzo esibangela i-RS. Empeleni siyisakhi sofuzo esiyinkimbinkimbi—esilawula ezinye izakhi zofuzo, sizibulale uma zingasadingeki. Okwamanje, kwenziwa ucwaningo olunzulu ukuze kutholwe izindlela eziphumelelayo zokuselapha nokusiqeda ekugcineni.

Manje uHillary uneminyaka engu-20 ubudala futhi uthembele ngokuphelele kwabanye ukuze bamfunze, bamgqokise, bamgeze futhi bamshintshe amanabukeni. Nakuba enesisindo esingamakhilogremu angu-45 kuphela, uyasinda. Ngakho mina noLori sisebenzisa umshini kagesi wokumphakamisa ukuze simbeke futhi simkhiphe embhedeni nakubhavu. Umngane othile oseduze wafaka namasondo esihlalweni sikaHillary, ukuze sikwazi ukungena ngaphansi kwalo mshini futhi ehliselwe phezu kwaso.

Ngenxa yesimo sikaHillary, mina noLori asivamile ukuya naye emihlanganweni yethu yobuKristu eHholo LoMbuso LoFakazi BakaJehova. Kodwa lokhu akusho ukuthi siyalahlekelwa ngokomoya. Silalela imihlangano ngokuxhunywa ngocingo sisekhaya. Lokhu kusiza mina noLori sikwazi ukushintshana ngokunakekela uHillary. Omunye wethu usala naye ekhaya ukuze omunye aye emhlanganweni eHholo LoMbuso.

UHillary weneme nakuba engaphansi kwalezi zimo. Simfundela INcwadi Yami Yezindaba ZeBhayibheli kanye nencwadi ethi Funda KuMfundisi Omkhulu.a Ngivame ukumtshela indlela uJehova uNkulunkulu amthanda ngayo. Ngiyamkhumbuza ukuthi maduzane uJehova uzomphulukisa futhi uzokwazi ukusho zonke izinto engaziyo ukuthi ufuna ukuzisho kodwa ahlulekayo ukuzisho okwamanje.

Kunzima ukwazi ukuthi yini uHillary ayiqondayo, ngoba ikhono lakhe lokukhuluma lilinganiselwe kakhulu. Kodwa kuningi akusho ngamehlo noma ngokucwayiza nangemisinjwana emincane ayishoyo. Ngiyamtshela ukuthi nakuba ngingakuzwa lokho akushoyo, uJehova uyakuzwa. (1 Samuweli 1:12-20) Ngendlela yethu elinganiselwe kakhulu yokukhulumisana esesineminyaka siyisebenzisa, uyangibonisa ukuthi uyakhuluma noJehova. Ngibheke phambili esikhathini lapho ‘ulimi loyisimungulu luyokhamuluka ngokuthokoza,’ ngaphansi koMbuso kaNkulunkulu. (Isaya 35:6) Nami ngiyokwazi ukuzwa izwi lendodakazi yami.—Inikelwe.

[Umbhalo waphansi]

[Amazwi acashunwe esihlokweni ekhasini 19]

UHillary waqala ukunyakazisa izandla ngendlela engavamile—elokhu eziyisa emlonyeni engayeki

[Amazwi acashunwe esihlokweni ekhasini 19]

Waqala ukuphefumula ngendlela engavamile, ephelelwa umoya noma avele awubambe

[Amazwi acashunwe esihlokweni ekhasini 20]

‘[Umuntu one-RS] angase afise futhi afune ukunyakaza, kodwa ahluleke ukwenza kanjalo.’—I-Rett Syndrome Handbook

[Amazwi acashunwe esihlokweni ekhasini 21]

Ngiyamtshela ukuthi nakuba ngingakuzwa lokho akushoyo, uJehova uyakuzwa

[Ibhokisi ekhasini 21]

IZIMPAWU ZE-RETT SYNDROME

Esikhathini esithile eminyakeni elandela izinyanga zokuqala eziyisithupha kuya kwezingu-18 ephila, umntwana one-Rett syndrome uqala ukuba nezimpawu zokungakhuli kahle. Lezi zimpawu zihlanganisa ezilandelayo:

□ Ukungakhuli kwekhanda kusukela enezinyanga ezine kuya eminyakeni emine ubudala.

□ Ukungasebenzi kwezandla.

□ Ukungakwazi ukukhuluma.

□ Ukunyakazisa izandla okungapheli, njengokushaya izandla noma ukusonta izihlakala. Abantu abane-RS bavame ukunyakazisa izandla zabo sengathi “bayawasha” noma bazifake emlonyeni kaningi.

□ Uma umntwana ekwazi ukuhamba, uhamba kanzima agxamalaze. Njengoba ekhula, kungase kube nzima kakhulu ukunyakaza nokuhamba.

□ Ukuphefumula ngendlela engavamile: ukubamba umoya (apnea) noma ukuphelelwa umoya.

□ Ukuquleka—okwenzeka lapho ubuchopho bukhipha imiyalezo enamandla kakhulu—okuthinta indlela enza nanyakaza ngayo. Ngokuvamile lokho kuquleka akuyona ingozi.

□ Ukugobeka komhlandla kungase kwenze umntwana atshekele nganxanye noma agobele phambili.

□ Amanye amantombazane avame ukuququda amazinyo.

□ Izinyawo zincane, futhi ukungajikelezi kahle kwegazi kungenza izinyawo zibande noma zivuvukale.

□ Amantombazane avame ukuba mafushane noma abe mancane ngomzimba uma kuqhathaniswa nobudala bawo. Futhi angase acasuke ngokushesha angalali nakahle, abe nenkinga yokuhlafuna nokugwinya, noma aqhaqhazele lapho ethukuthele noma ethukile.

[Umthombo]

Source: International Rett Syndrome Association