Salankhula Koma Timamvana

NDINALI ndi pathupi ndipo masiku ake atakwana, ndinabereka mwana wamkazi dzina lake Hillary. Anaoneka kuti ndi mwana wathanzi, koma dokotala anapeza kuti mwanayu ali ndi vuto. Mafupa ake a m’kamwa akumwamba anali osagwirana. Dokotalayu anati vuto limeneli ndi losavuta kuchiza ndi opaleshoni ngati mwana wakwanitsa zaka pafupifupi ziwiri. Chabe kuti vuto linali lakuti sankatha kuyamwa bwinobwino. Ankavutika kuyamwa chifukwa chakuti analibe mbali ina ya fupa la m’kamwa.

Miyezi itatu yoyambirira, Hillary tinkamudyetsa ndi manja. Kenako ali ndi miyezi inayi, anaphunzira kutseka mphuno zake kuti azitha kuyamwa ndipo anayamba kuyamwa. Tinasangalala kwambiri. Pasanapite nthawi, Hillary anayamba kunenepa ndipo zonse zinkaoneka kuti zili bwino. Ankatha kugwira zinthu ndi manja ake. Ndiponso ankayerekeza kulankhula muja ana amachitira komanso anaphunzira kukhala.

Anayamba Kusonyeza Zizindikiro Zachilendo

Itakwana nthawi yakuti Hillary ayambe kukwawa, ankaoneka kuti analibe chidwi. Mwachitsanzo, m’malo modzuka ndi manja n’kugwada kuti ayambe kukwawa, iye ankangokhala pansi n’kumadzikhwekhwereza uku ndi uku. Zimenezi zinandidabwitsa chifukwa zinali zosiyana ndi zimene mwana wanga wamkulu wamkazi, dzina lake Lori, ankachita ali msinkhu ngati womwewu. Nditafunsa amayi anzanga, anandiuza kuti ana ena abwinobwino sakwawa. Nditamva zimenezi, mtima wanga unakhala m’malo ndipo sindinade nkhawa ndi khalidwe la Hillary.

Atatsala pang’ono kukwanitsa chaka chimodzi, Hillary anali ataphunzira kulankhula mawu ochepa chabe. Zimenezi zinali zachilendo. Koma ana amasiyana, ena amafulumira kulankhula, ena amachedwa. Hillary analibenso chidwi chofuna kuyenda kapena kuimirira. Nditapita naye kwa dokotala wa ana, anandiuza kuti mwana wanga ali ndi mapazi ophwatalala. Patadutsa miyezi ingapo, iye sanayambebe kuimirira.

Tinapitanso kwa dokotala ndipo panthawiyi anandiuza kuti Hillary ndi waulesi. Atakwanitsa miyezi 18, anali asanayambebe kuyenda komanso anali atasiya kulankhula mawu ochepa amene anaphunzira. Ndinaimbira foni dokotala wa ana uja n’kumuuza motsimikiza kuti mwana wanga ayenera kuti ali ndi vuto ndithu. Tinakonza zokaonana ndi katswiri wa mitsempha ya muubongo.  Anamuyeza zinthu zambirimbiri, kuphatikizapo kugwiritsa ntchito EEG (electroencephalogram), imene imathandiza madokotala kuona mmene magetsi a muubongo akugwirira ntchito. Zotsatira za EEG zinasonyeza kuti Hillary wakhala akuchita khunyu. Katswiriyu ananenanso kuti mwanayu anali ndi mawanga ooneka ngati abulauni pakhungu ndiponso maso ake amaoneka ngati iye ali ndi mavuto a muubongo. Zinali zoonekeratu kuti Hillary ali ndi vuto ndithu, koma katswiriyu sanathe kufotokoza kuti vutolo n’chiyani.

Ngakhale kuti kuchipatala anapeza kuti Hillary wakhala akuchita khunyu, ife sitinaonepo chizindikiro chilichonse chakuti iye ali ndi khunyu. Koma panali zinthu zina zomwe tinkaona zosonyeza kuti ali ndi vuto. Mwachitsanzo, ankalira kwa nthawi yaitali pafupifupi tsiku lililonse. Chinthu chokha chimene chinkaoneka kuti chikuthandiza chinali kumuyendetsa pagalimoto kuzungulira dera lomwe timakhala kwinaku tikumuimbira nyimbo. Tinkazungulira naye kwa nthawi yaitali, mwakuti anthu ena ankatifunsa chifukwa chimene tinkadutsiradutsira ndi galimoto pafupi ndi nyumba zawo.

M’chaka chake chachiwiri, zinthu zina zachilendo zinayamba kuchitika. Nthawi zonse manja a Hillary sanali kukhazikika, anali kumangogwedera, kuwapititsa m’kamwa kenako kuwachotsa. Anafika pomachita zimenezi osasiya nthawi iliyonse yomwe ali maso. Panalinso nthawi imene ankalephera kugona. Nthawi zina ankagona pang’ono masana koma n’kukhala maso usiku wonse.

Hillary ankakonda nyimbo mwakuti ankatha kuonera nyimbo za ana pa TV kwa maola ambiri. Koma zinkaoneka kuti mavuto ake a muubongo anali kukulirakulira. Anayamba kuvutika kupuma. Nthawi zina ankapuma mofulumira ndipo nthawi zina ankabanika. Masiku ena ankabanika mpaka milomo yake kusintha mtundu n’kumaoneka yapepo. Zimenezi zinkatiopsa kwambiri.

Tinayesa mankhwala a khunyu, koma ankaoneka kuti anali kuyambitsa mavuto ena. Kenako tinayesa njira zosiyanasiyana, kupita kwa madokotala ambiri ndiponso kumuyeza zinthu zosiyanasiyana. Tinayesanso mankhwala akuchipatala ndiponso a anthu ena odziwa mankhwala, komanso tinapita kwa akatswiri ambiri a matenda. Ngakhale tinachita zonsezi, matenda a mwana wathu sanadziwike, nanjinso kuwachiza ndiye ayi.

Patapita Nthawi, Matenda Ake Anadziwika

Hillary ali ndi zaka pafupifupi zisanu, mnzanga wina anawerenga m’nyuzipepala nkhani ya mtsikana wina amene anali ndi matenda osadziwika bwino obadwa nawo otchedwa Rett (RS). Mnzangayo ankadziwa kuti Hillary anali ndi zizindikiro zofanana ndi zimene anawerengazo, choncho ananditumizira nkhaniyo.

Titalandira zimenezi, tinapita kukaonana ndi katswiri wina wa mitsempha ya muubongo amene anali kudziwa za matendawa. Cha kumayambiriro kwa m’ma 1990, akatswiri ankadziwa ndithu kuti matenda a RS anali obadwa nawo chifukwa anali atapezeka kwambiri mwa atsikana. Koma anali asanapeze jini imene imayambitsa matendawa, ndipo zizindikiro zake zambiri zimafanana ndi za matenda a autism kapena matenda a muubongo otchedwa cerebral palsy. Choncho pofuna kudziwa ngati munthu ali ndi matenda a RS, akatswiri amayang’ana zizindikiro zake. Hillary anali ndi zizindikiro pafupifupi zonse. Katswiri amene tinakamuona uja anatsimikizira kuti Hillary ali ndi matenda a RS.

Ndinayamba kuwerenga kwambiri za matendawa ngakhale kuti nthawi imeneyo mabuku sankafotokoza zambiri. Ndinawerenga kuti matenda a RS amapezeka pafupifupi ndi mwana mmodzi wamkazi pa ana aakazi 10,000 kapena 15,000 alionse, ndiponso kuti matendawa alibe  mankhwala kapena njira yeniyeni yolimbana nawo. Ndinawerenganso mfundo ina imene sindikanaidziwa yakuti chiwerengero chochepa cha ana aakazi amene ali ndi Rett amafa mosadziwika bwino. Koma ndinapeza mfundo ina imene inali ngati yotonthoza. Dikirani ndikuuzani. Vuto lalikulu limene odwala matenda a RS amakhala nalo limatchedwa apraxia. Buku lofotokoza za matendawa limati: “Apraxia imachititsa munthu kulephera kuyendetsa ziwalo za thupi ngakhale akufuna kutero. Limeneli ndi vuto lalikulu la anthu amene ali ndi matenda a RS, ndipo vutoli limakhudza thupi lonse kuphatikizapo kulankhula ndi kuyendetsa maso. Mtsikana amene ali ndi matenda a Rett amatha kudziwa kuti ayendetse thupi lake, koma amalephera kudziwa mmene angachitire ndiponso nthawi imene angachite zimenezo. Iye angafune kuti asunthe koma amakanika.”—The Rett Syndrome Handbook.

N’chifukwa chiyani mfundo imeneyi inali yotonthoza? N’chifukwa chakuti apraxia siilanda munthu nzeru, koma imangobisa nzeru zakezo. Munthuyo amalephereratu kulankhula ndi ena. Ndinkadziwa kuti Hillary ankazindikira chilichonse chimene chinali kuchitika, koma chifukwa cha kulephera kulankhula, kunali kovuta kutsimikizira zimenezi.

Popeza kuti apraxia imalepheretsa munthu kulankhula ndi kuyenda, Hillary nayenso anasiya kulankhula ndi kuyenda. Atsikana ambiri amene ali ndi matenda a RS amavutikanso ndi khunyu, kupindika msana, kukukuta mano ndi mavuto ena. Hillary ankachitanso zimenezi.

Chiyembekezo Chenicheni

Posachedwapa, akatswiri anapeza jini imene imayambitsa matenda a RS. Ndi jini yovuta kuimvetsa imene imalamulira majini ena, ndipo imawasiyitsa kugwira ntchito majiniwo akakhala kuti sakufunikiranso. Panopa, akatswiri ali mkati mochita kafukufuku pofuna kupeza njira zabwino zoperekera thandizo komanso mankhwala a matendawa.

Panopa Hillary ali ndi zaka 20 ndipo amadalira anthu ena kumudyetsa, kumuveka zovala, kumusambitsa ndi kumusintha matewera. Ngakhale kuti amalemera makilogalamu pafupifupi 45, ndi zovuta kumunyamula. Choncho ine ndi Lori timagwiritsa ntchito chonyamulira chamagetsi pomugoneka ndi kumuchotsa pabedi komanso m’bafa. Mnzathu wina anaikirira timagudumu kumpando wa Hillary wandalema, n’cholinga chakuti mpandowo uzitheka kuukankha kuti tikamunyamula tizimutsitsira pa mpandowo mosavuta.

Chifukwa cha matenda a Hillary, zimavuta kuti ine ndi Lori tipite naye ku misonkhano yachikhristu ku Nyumba ya Ufumu ya Mboni za Yehova. Komabe, zimenezi sizikutanthauza kuti timangokhala osapembedza. Telefoni ya m’nyumba mwathu ndi yolumikizana ndi telefoni ya  kumene timakasonkhana, choncho zimatheka kumvetsera misonkhano panyumba. Zimenezi zimathandiza kuti ine ndi Lori tizisinthana kusamalira Hillary. Mmodzi wa ife amatsala pakhomo ndi Hillary ndipo wina amapita ku Nyumba ya Ufumu kukasonkhana.

Hillary ndi mwana wabwino komanso amasangalala ngakhale ali ndi mavuto oterewa. Timamuwerengera buku lakuti Bukhu Langa la Nkhani za Baibulo ndi la Phunzirani kwa Mphunzitsi Waluso. * Nthawi zambiri ndimamuuza kuti Yehova Mulungu amamukonda kwambiri. Ndimamuuzanso kuti posachedwapa Yehova adzam’chiritsa ndipo adzatha kulankhula zinthu zonse zimene ndimadziwa kuti amalephera kulankhula panopa.

N’zovuta kudziwa zimene Hillary angathe kumva, chifukwa satha kulankhula bwinobwino. Ngakhale zili choncho, amatha kundiuza zambiri mwa kungondiyang’ana kapena kuphethira ndiponso mwa kutulutsa mawu amene samveka. Ndimamuuza kuti ngakhale kuti sindimva zimene akunena, Yehova amamva. (1 Samueli 1:12-20) M’zaka zonsezi takhala ndi njira imene imatithandiza kumvana pang’ono, ndipo iye amasonyeza kuti amalankhula ndi Yehova. Ndikuyembekezera mwachidwi Ufumu wa Mulungu pamene “lilume la wosalankhula lidzaimba.” (Yesaya 35:6) Panthawi imeneyo inenso ndidzamva mawu a mwana wanga.—Nkhaniyi tachita kutumiziridwa ndi munthu wina.

[Mawu a M’munsi]

[Mawu Otsindika patsamba 19]

Nthawi zonse manja a Hillary sanali kukhazikika, anali kumangogwedera, kuwapititsa m’kamwa kenako kuwachotsa

[Mawu Otsindika patsamba 19]

Anayamba kuvutika kupuma. Nthawi zina ankapuma mofulumira ndipo nthawi zina ankabanika

[Mawu Otsindika patsamba 20]

“[Munthu amene ali ndi matenda a RS] angafune kuti asunthe koma amakanika.”—The Rett Syndrome Handbook

[Mawu Otsindika patsamba 21]

Ndimamuuza kuti ngakhale kuti sindimva zimene akunena, Yehova amamva

[Bokosi patsamba 21]

ZIZINDIKIRO ZA MATENDA A RETT

□ Pakadutsa miyezi 6 mpaka 18 kuchokera pamene mwana amene ali ndi matenda a Rett wabadwa, amasiya kukula bwinobwino. Amayamba kusonyezanso zizindikiro zotsatirazi:

□ Mutu sukula mmene umafunikira kukulira, kuyambira miyezi inayi mpaka zaka zinayi.

□ Amalephera kugwiritsa ntchito manja bwinobwino.

□ Amalephera kulankhula.

□ Amangoyendetsa manja, kuwamenyetsa, kuwamenyetsa pansi kapena kuwapindapinda. Anthu omwe ali ndi matenda a RS nthawi zambiri amayendetsa manja awo ngati akuchapa ndipo amawaika ndi kuwachotsa m’kamwa mobwerezabwereza.

□ Ngati mwanayo akutha kuyenda, amalimbitsa miyendo ndipo amatangaza. Mwanayo akamakula, amayamba kuvutika kuyenda.

□ Amakhala ndi kapumidwe kachilendo: Nthawi zina amabanika kapena amapuma mofulumira.

□ Amachita khunyu, limene limachitika ngati ubongo mosayembekezera ukutulutsa mphamvu zambiri zamagetsi zimene zimasokoneza khalidwe ndi kayendetsedwe ka thupi. Khunyulo palokha siliopsa kwenikweni.

□ Chifukwa cha kupindika msana, mwana amakhala wopendekera kumanja, kumanzere kapena kutsogolo.

□ Atsikana ena amakukuta mano nthawi zambiri.

□ Amakhala ndi kaphazi kakang’ono, ndipo chifukwa cha kusayenda bwino kwa magazi, mapaziwo amazizira kwambiri kapena kutupa.

□ Atsikana kawirikawiri amakhala aang’ono msinkhu ndi thupi poyerekezera ndi zaka zawo. Ena sachedwa kukwiya ndipo amavutika kugona, kutafuna ndi kumeza zinthu ndiponso amanjenjemera akakwiya kapena akachita mantha.

[Mawu a Chithunzi]

Source: International Rett Syndrome Association