Nangona Engakwazi Ukuthetha Uyeviwa

IZINTO zahamba kakuhle ngoxa ndandikhulelwe ndaza ndazala intwazana egama linguHillary. Olu sana lwam lwalubonakala luphile qete kodwa ugqirha wafumanisa ukuba inkalakahla yalo icandekile. Wathi ngokuqhelekileyo le ngxaki idla ngokulunga ngotyando xa umntwana eneminyaka emibini ubudala. Ingxaki kukuba usana lwam lwalungakwazi ukuncanca kakuhle. Koku kucandeka kwenkalakahla okwakubangela le ngxaki.

Kwiinyanga ezintathu zokuqala, kwakufuneka simseze ngesandla. Ngenyanga yesine wakwazi ukubamba umoya ngeempulo yaye watsho wakwazi ukuncanca. Kwatsho kwee qabu emva koko! Kungekudala uHillary wathi futhu emzimbeni yaye yonke into yabonakala ihamba kakuhle. Wayekwazi ukuzibambela izinto. Wayengxola njengazo zonke iintsana yaye waqalisa ukuhlala.

Kwenzeka Izinto Ezikhwankqisayo

Kwathi xa kufika ixesha lokuba aqalise ukukhasa, akenza ntshukumo. Ngokomzekelo kunokuba aphakame ngezandla nangamadolo, wayehlala ngeempundu aze atshitshilize. Yandimangalisa le nto kuba intwazana yam endala, uLori yenza okwahlukileyo xa yayilingana naye. Xa ndincokola nabanye oomama ndafumanisa ukuba bakho nabanye abantwana abaphilileyo abangakhasiyo. Emva kokuva oku, andizange ndizikhathaze kangako ngale meko kaHillary.

Xa wayesele eza kugqiba unyaka, uHillary wayefunde ukubiza amagama nje ambalwa. Oku kwakungaqhelekanga; kodwa ke abantwana abafani, abanye bafunda kade ukuthetha. UHillary wayengenzi nomgudu wokuhamba okanye wokuma. Ndamsa kugqirha wabantwana, yaye wathi oku kubangelwa kukuba imisipha yeenyawo zakhe ayiqinanga. Kwaqengqeleka iinyanga engenzi mgudu wakuphakama.

Samsa kwagqirha kwakhona yaye wathi uHillary uphethwe nje bubuvila. Xa wayeneenyanga ezili-18 ubudala, wayengekaqalisi nokuhamba, yaye wayesele eyekile nokubiza loo magama ambalwa wayewazi. Ndafowunela ugqirha ndaza ndamxelela ukuba ikho into engahambi kakuhle ngomntwana wam. Senza amalungiselelo okuya kugqirha wemithambo-luvo. Wathi makwenziwe uxilongo lwezinto ezahlukahlukeneyo kuquka ielectroencephalogram (iEEG), eyenza oogqirha bakwazi ukubona indlela ingqondo esebenza ngayo. IEEG yabonisa ukuba uyaxhuzula. Lo gqirha wathi uHillary unezinye iingxaki—njengecafé-au-lait, amabala-bala aba seluswini neengxaki zamehlo ezidla ngokubakho xa kukho into engahambi kakuhle kwimithambo-luvo. Kwakubonakala ukuba uHillary unengxaki kodwa lo gqirha wayengayichani ncam ukuba yintoni.

Nangona iziphumo zoxilongo zabonisa ukuba uHillary ukhe axhuzule, thina sasingazange sikhe simbone exhuzula. Phofu ke ezinye iingxaki zazizicacele. Wayedla ngokukhala phantse usuku lonke angathuthuzeleki. Wayebangcono xa simhambisa ngemoto size simculele. Oku sasikwenza rhoqo kangangokuba abamelwane bade bafuna ukuqonda isizathu sokuba sithande ukujikeleza imizi yabo!

Kunyaka wakhe wesibini uHillary waqalisa ukwenza into engaqhelekanga ngezandla zakhe—wayethanda ukuzisa emlonyeni aphinde azihlise yaye le nto wayeyenza ixesha elide. Yaye ekugqibeleni le nto wayeyenza qho xa engalalanga. Wayenexesha apho wayengalali khona. Ngamanye amaxesha wayelala nje kancinane emva kwemini, emva koko angaphinde alale de kuse.

UHillary wayewuthanda umculo. Wayebukela iinkqubo zabantwana zomculo kumabonwakude kangangeeyure ezininzi. Kodwa ingxaki awayenayo yemithambo-luvo yaba mbi nangakumbi. Waqalisa ukungakwazi ukuphefumla kakuhle. Maxa wambi wayebamba umoya de imilebe yakhe ijike ibala ibe mfusa. Yayisoyikisa kakhulu ke leyo.

Samnika amayeza okuxhuzula kodwa asuka avusa ezinye iingxaki. Emva koko sazama ezinye iindlela ezininzi zonyango—saya koogqirha abahlukahlukeneyo, exilongwa ukuze kubonwe nezinye izinto, sasisiya kwiindawo zonyango eziqhelekileyo nezo kusetyenziswa unyango olwahlukileyo kuzo, nakwiingcali zonyango. Asizange sifumane ncedo kuzo zonke.

Ekugqibeleni Kufumaneka Uncedo

Xa uHillary wayeneminyaka emihlanu ubudala, umhlobo wam osenyongweni wafunda inqaku kwiphephandaba lasekuhlaleni, elalithetha ngentombazana eyayinesifo esingaziwa kangako ekuthiwa yiRett syndrome (RS). Lo mhlobo wam wayesazi ukuba uHillary wayenengxaki efananyo, waza wandithumelela elo phephandaba.

Emva kokufumana le nkcazelo, saya komnye ugqirha wemithambo-luvo onamava. Ngasekuqaleni kweminyaka yee-1990, abaphengululi babeqinisekile ukuba iRS ibangelwa yimizila yemfuza ekubeni yayixhaphake kakhulu emantombazaneni. Kodwa owona mzila wemfuza ubangela iRS wawungekafunyanwa yaye iimpawu zayo zifana nezo zomntu oneautism necerebral palsy. Ngoko ukuze umntwana aziwe ukuba uneRS, kufuneka abe nazo zonke iimpawu zayo. UHillary wayenazo phantse zonke. Ugqirha wemithambo-luvo wathi uneRS.

Ndaqalisa ukufunda yonke into engesi sifo, yaye ngelo xesha kwakungekho nkcazelo ingako. Ndafunda ukuba kwiintsana ezili-10 000 ukusa kwezili-15 000 ezingamantombazana, usana olu-1 luphathwa yiRS yaye ayinyangeki. Enye into endayifundayo nendinqwenela ukuba ngendandingayifundanga—kukuba amantombazana ambalwa aneRett ayafa. Kodwa ke ikho nenye into endayifundayo eyandithuthuzelayo. Makhe ndicacise. Eyona ngxaki inkulu kumantombazana aneRS ibizwa ngokuba yiapraxia. IThe Rett Syndrome Handbook ithi: “Oku kubhekisela ekungakwazini ukulungelelanisa ingqondo nentshukumo yomzimba. IRS ibangela ukuba kuphazamiseke yonke intshukumo yomzimba, kuquka ukuthetha nokujonga. Ngoxa intombazana eneRett ikwazi ukushukumisa umzimba, iye ingakwazi ukuwulawula. Iye ifune ukushukuma kodwa ingakwazi.”

Kwakutheni ukuze oku kundithuthuzele? Kungenxa yokuba ingqondo yomntu oneapraxia iyasebenza, ntonje akakwazi ukunxibelelana nabanye abantu. Ndandivakalelwa kukuba uHillary uyayazi yonke into eyenzekayo, kodwa ngenxa yokuba engakwazi ukuthetha, ndandingenakuqiniseka.

Kuba iapraxia ibangela umntu angakwazi ukushukuma nokuthetha, noHillary akakwazi ukuhamba nokuthetha. Amantombazana amaninzi aneRS ayaxhuzula, agobe ithambo lomnqonqo, adle amazinyo, abe nazo nezinye iingxaki. NoHillary wayenazo ezo ngxaki.

Ithemba Lokwenene

Umzila wemfuza obangela iRS uye wafunyanwa. Ngumzila ontsonkothe kakhulu—ulawula indlela esebenza ngayo eminye imizila yemfuza, uyivale xa kungasekho mfuneko yayo. Sithethanje kwenziwa uphando kuzanywa ukufumana unyango lwesi sifo.

Ngoku uHillary uneminyaka engama-20 ubudala yaye uyatyiswa, anxityiswe, ahlanjwe atshintshwe namanapkeni. Nangona engama-45 eekhilogram kuphela ubunzima, akulula ukumphakamisa. Ngoko ke, sinoLori sisebenzisa umatshini osebenza ngombane xa simphakamisa ebhedini naxa simfaka ebhafini. Omnye umhlobo wam wafakela amavili amancinane kwisitulo sikaHillary ukuze sikwazi ukutsalwa ngalo matshini wombane.

Ngenxa yale meko kaHillary, sinoLori asikwazi ukuya naye kwiintlanganiso zamaKristu eziqhutyelwa kwiHolo yoBukumkani yamaNgqina kaYehova. Kodwa ke, asilahlekelwa ngokomoya. Siyakwazi ukuphulaphula iintlanganiso ngefowuni ngoxa sisekhaya. Ngaloo ndlela mna noLori siyatshintshisana ngokunyamekela uHillary. Omnye wethu uhlala ekhaya kunye naye ngoxa omnye eye kwiintlanganiso kwiHolo yoBukumkani.

Nangona ekule meko, uHillary uzilungele yaye wonwabile. Simfundela incwadi ethi Incwadi Yam Yamabali EBhayibhile nethi Funda KuMfundisi Omkhulu.a Ndihlala ndimxelela ukuba uYehova uThixo umthanda gqitha. Ndisoloko ndimkhumbuza ukuba uYehova uza kumphilisa kungekudala yaye uya kuzithetha zonke izinto angakwaziyo ukuzithetha ngoku.

Kunzima ukwazi izinto eziqondwa nguHillary, kuba engakwazi ukuthetha. Noko ke, kuninzi akwaziyo ukukutsho ngokukujonga nje okanye ngokuqhwanyaza nangengxolo ethile ayenzayo. Ndiyamxelela ukuba nangona ndingamva ukuba uthini, uYehova uyamva. (1 Samuweli 1:12-20) Yaye ngaloo ndledlana yethu yokunxibelelana uye andibonise ukuba uyathetha noYehova. Ndikhangele phambili kuBukumkani bukaThixo, xa ‘ulwimi lwesimumu luya kumemelela ngochulumanco.’ (Isaya 35:6) Nam ndiya kutsho ndikwazi ukuva ilizwi lentombi yam.—Linikelwe.

[Umbhalo osemazantsi]

[Amagama acatshulweyo akwiphepha 19]

UHillary waqalisa ukwenza into engaqhelekanga ngezandla zakhe—wayethanda ukuzisa emlonyeni aphinde azihlise

[Amagama acatshulweyo akwiphepha 19]

Waqalisa ukungakwazi ukuphefumla kakuhle

[Amagama acatshulweyo akwiphepha 20]

“[Umntu oneRS] uye afune ukushukuma kodwa angakwazi.”—IThe Rett Syndrom Handbook

[Amagama acatshulweyo akwiphepha 21]

Ndiyamxelela ukuba nangona ndingamva ukuba uthini, uYehova uyamva

[Ibhokisi ekwiphepha 21]

IIMPAWU ZERETT SYNDROME

Emva kokuba usana lugqibe iinyanga ezi-6 ukusa kwezili-18, imeko yalo iye iqalise ukuba mandundu. Nazi iimpawu onokubona ngazo:

□ Intloko iyayeka ukukhula ukususela kwiinyanga ezine ukusa kwiminyaka emine.

□ Ukungakwazi ukusebenzisa izandla kakuhle.

□ Ukungakwazi ukuthetha.

□ Intshukumo yezandla ngokuphindaphindiweyo, njengokuqhwaba okanye ukuzihlikihla. Abantwana abaneRett syndrome badla ngokushukumisa izandla zabo ngokungathi “bayahlamba” okanye bamane bezisa emlonyeni.

□ Ukuba umntwana uyakwazi ukuhamba, imilenze iyaqina. Njengoko umntwana ekhula, ukuhamba kusenokuba nzima.

□ Uphefumla ngendlela engaqhelekanga: uyawubamba umoya (iapnea) okanye aphefumle ngokukhawuleza (ihyperventilation).

□ Uyaxhuzula—xa imichiza esebuchotsheni isuke isebenze ngamandla ngokungalindelekanga—yaye oko kuchaphazela intshukumo. Ukuxhuzula akubangeli ngxaki.

□ Ukugoba komnqonqo kusenokubangela umntwana agobe.

□ Amany’ amantombazana adla ngokudla amazinyo.

□ Aba neenyawo ezincinane yaye kuba igazi lingajikelezi kakuhle emzimbeni aba neenyawo ezibandayo okanye ezidumbileyo.

□ Adla ngokuba mancinane ngomzimba yaye abe mafutshane. Asekunokucaphuka ngokukhawuleza kube nzima ukulala, ukuhlafuna nokuginya okanye angcangcazele xa ecaphuka okanye esoyika.

[Inkcazelo]

Umthombo: International Rett Syndrome Association