這篇文章是我在美國腁胝體異常組織 ( National Organization for Disorder of the Corpus Callosum)的網站上找到的。 腁胝體(corpus callosum)是連結左腦與右腦的主要神經。腁胝體裡有超過兩億以上的神經軸索(axons)。我的二女兒是先天的腁胝體完全缺損(complete agenesis of the corpus callosum)(C-ACC) 腦裡完全沒有長那條神經。 在台灣時診斷是腦麻，回美國後美國的醫生發現是先天的腁胝體完全缺損。這篇文章給了我很大的啟示，讓我又有動力再走下去。希望能和天使寶寶的媽咪們共同勉勵。
歡迎來到荷蘭by Emily Perl Kingsley
常有人會問我，撫養一個有殘障的孩子的心情是怎樣的？為了更能讓其他沒有此等「特別」經歷的人得以理解我的心情，我想到了以下的一個描述.....
當你計畫要生一個小孩的時候，整個人的心情，就像在籌備著一個夢想中的義大利之旅。你買了一堆的旅遊指南，為你的行程作出很多完美的規劃。大劇院、米高安哲羅(Michelangelo, artist) 的大衛像、威尼斯的鳳尾船。你甚至學習一些義大利的常用語。所有的一切都是那麼的興奮那麼的令人期待。
經過數個月的熱切期盼，那日終於來臨了。你整裝待發，正式起行。數小時後，飛機降落。空姐走近跟你說：「歡迎來到荷蘭！」
「荷蘭？！你在說什麼？？荷蘭？ 怎麼會是荷蘭？ 我是要去義大利。我畢生的夢想就是去意大利啊。」
偏偏飛機的航道有變，它只能在荷蘭著陸，所以你也只能留下來。但最重要的一件事是，它也不是把你帶到一個恐怖、低下、骯髒、有流行病，大飢荒和滿佈細菌的地方去。只是去了另一個地方，一個不同的地方。
所以你只好再去買幾本新的旅遊指南，再學習另一個截然不同的語言。你也會遇上一群你沒想過會認識到的新人物。
它只是一個不同的地方。它可能比義大利的節奏慢一點,也沒有義大利來得叫人目眩神迷。但是當你在那裡待久一點，你深呼吸一下，再環顧一下四周....你會開始留意到....原來荷蘭有風車...荷蘭也有鬱金香。荷蘭甚至有倫勃朗(歐洲十七世紀最偉大的畫家之一).
但是所有你認識的人大家都忙碌著來來回回義大利......大家都在炫耀他們在義大利的美好時光。你的餘生本能地回應著說：「是啊，我本來也是要去那裡的。我本來也是這樣計劃的。」
因為這個失落的夢想是一個重大的失去，所以你的傷痛永遠永遠都不會消失。
但是如果你一輩子都在嘆息你去不成義大利之上，你將永遠無法放開心胸來享受荷蘭獨有的、可愛的美。
https://www.nodcc.org/index.php?option=com_content&task=view&id=25&Itemid=55
Welcome to Holland, by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared the unique experience to understand it, to imagine how it would feel. It’s like this: When you are going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo’s “David.” The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes and says, “Welcome to Holland.” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plans. They’ve landed in Holland, and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guidebooks. You must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there awhile and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
To 卉卉麻麻
我家妹妹也叫卉卉耶 ( 家卉)
在台灣的時候都叫她阿卉 (台語)
情形和你們家有點像....
我家妹妹帶腦麻和新陳代謝失調....最近要裝鼻胃管灌食
還有發展遲緩....加油吧!!!!!!
To 帆的把拔&馬麻
請盡量把文章傳出去吧!!! 我希望能幫助更多的人
真的
我常想跟許多"正常"孩子的媽媽們說
沒有一對父母
是自己準備好說:
"來,我們來做天使爸媽吧!"
不過
正因為如此
這許多父母們
面對意外旅程所展現的樂觀與勇氣和無限的愛
才會如此撼動人心
本內容涉及成人議題，未滿18歲不可瀏覽
