是母親－－台灣裘馨兒母親之存有與護理師的相遇

Being a Mother: Encounters between Mothers of Children With Duchenne Muscular Dystrophy and Nurses in Taiwan

母親角色的存有乃透過各種文化被人們理解並再現。傳統的台灣女性藉由生育、養育健康兒子以「延續宗族生命」、「養兒防老」來彰顯文化賦予母親的存有價值。然而，當母親的基因使其「兒子」罹患漸進癱瘓至死亡的「裘馨氏肌肉萎縮症」時，母親的存有價值即因悖離文化期待而斷裂。此斷裂之苦使母親身為「人」的存有本質被自身遺忘，而此遺忘讓母親成為無聲的受苦者。當存活在社會期盼──「燃燒自己，照亮別人」卻陷入職業環境惡化的護理人員與裘馨兒母親相遇時，期盼從同為竭力關照他人之母親角色的鏡像中，能鼓勵護理人員自身挺身而出，展現和倡議護理的存有讓人看見，而能在如此惡劣職場環境中對自身更加悅納，並從中產生力量，進而能與裘馨兒母親關照交換，使彼此的存有能發聲於社會且不再受苦。

The role of ”mother” is understood and represented differently by people from different cultures. In traditional Taiwanese society, mothers demonstrate their existence value by giving birth to and raising sons able to continue her husband's familial line. Sons bear the patriarchal name and care for their parents in old age. However, a son stricken, paralyzed and eventually killed by Duchenne muscular dystrophy (DMD) can destroy a mother's perceived value in this traditional social context. Mothers are thus soundless sufferers. Nurses have a critical role to play in giving encouragement and hope to mothers of children with DMD. Through their own difficult situation, these mothers can also highlight the value and importance of Taiwan's nurses, who work in conditions marked by overloading, high stress, and under-appreciation. Caring for women in critical need of empathy and support help nurses realize their own positive capacity to empower sufferers.