陳家琦
徐動型腦癱(徐動型腦麻痹)
思想被困身軀 腦癱少女說不出的抉擇人生
「想食豬扒飯還是雞扒飯?想食豬扒飯望呢邊」,媽媽邊說邊搖一搖自己舉在家琦眼前的左拳頭,「想食雞扒飯就望呢邊」,又搖一搖右拳頭。躺在沙發上不能言語、不能控制身軀的陳家琦,來回掃視媽媽的雙手後,目光最終停在左手,用雙眼告訴媽媽她的選擇。
無論是豬扒飯雞扒飯、想坐輪椅還是坐梳化,母女間透過不斷的選擇題溝通。但在家琦呱呱墮地一刻,便面對了人生最大選擇題:生還是死。
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靈魂被困痙攣身軀
「家琦(19歲)是徐動型腦癱,醫生話比較麻煩,因為佢個腦乜都知,但肢體、手啊、腳仔啊,偏偏唔受控制,又講唔到。」媽媽坐在梳化上,邊按摩着家琦的小腿邊說。
躺在旁邊梳化的家琦,努力擰頭想看着媽媽,偏偏身軀四肢不受控制,向着相反方向繃緊彎曲,唯有發出「唔唔」抗議的聲音。身型嬌小的媽媽,一聽便懂得意思,吃力地抱起女兒,替她擺放姿勢。
攣縮的筋腱肌肉就像束縛衣般,緊緊綑縛着家琦的軀體,她要幾經掙扎,才能把手撐直;吃飯時要努力把口張開,迎接母親餵給她的一口飯。媽媽把握張口的一剎那,把食物送進口裏。就像每時每刻不斷搏鬥,吃一碗剪碎了的麵要個多小時,家琦消瘦得只有50多磅。
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