超越期待的美麗旅程

I was digging through a pile in the corner of the garage one day， hunting for a garden tool. Just as I spied it， there was a sound like two coconuts banging together， followed directly by a dull but thudding pain on my forehead.

It took me a few 1）exquisitely lengthy moments to realize that a shovel had fallen from the wall and landed on me. 2）Clutching my throbbing forehead， I staggered into the house， 3）seething with pain and with the 4）indignity that there was only one person to blame—me.

In the kitchen sat my 14-year-old daughter， Clare， enjoying a midday bowl of 5）Cheerios. On seeing me， she said her usual smiling， “Oh， hi Dad.”

On seeing my pain， she immediately arose and came over to me. I received a tender hug， a gentle kiss and a light rubbing of my new 6）Wile E. Coyote egg-bump. Though she spoke nothing further， I knew she was saying through her ministrations that I was loved.

Shortly after Clare was born， we learned she had 7）Down syndrome. My wife and I did not know much about what that meant， but someone from the local Down Syndrome Association told us of an age-old 8）analogy： The birth of a child with Down Syndrome is like booking a much-anticipated trip to Rome， but on getting off the plane finding that you have landed in Amsterdam—different than expected， but still good.

This did not mean much to us then， but we did know that the prospect of her unknown disabilities daunted and dismayed us. We held our other young children close， and cried.

Now in Grade 9， Clare is not quite as able physically or intellectually as most others her age. She has trouble with time， but she’s good at counting， can handle simple addition， speaks in lovely sentences and is a willing reader， with a little help for new words. Fortunately， she has been physically healthy.

What we hadn’t understood was the fruitful 9）bounty she would bring to our family. Clare’s sense of humour is delightful（she’s an 10）irrepressible tease and giggler）， and she is always ready to be part of any adventure， with her trademark， “Count me in！”

She has a purity of spirit， an openness and kindness that are not hidden behind the masks and scars we “normal” folks bear so enduringly. She loves to play tackle football （and tackle soccer and tackle tennis）， and can hit a baseball a country mile.

She loves soda crackers and Diet Coke. Her paintings have sold at an art show. She sings along with the songs in movies such as The Sound of Music at the top of her lungs， her deep and bellowing voice mostly finding the right words and notes.

She is a master of empathy， sensing physical， emotional and spiritual discomfort in others in a way that I cannot. She always finds ways to ease others’ suffering； our grateful family calls her The Healer.

When I was growing up， it was unusual to see someone with Down syndrome， as many lived in institutions. When I did see such a person， I’d instinctively take a lingering extra look because I sensed by the 11）gait， or shape， or facial features， that something wasn’t quite usual. Once confirmed， I’d quickly look away， and hurry on.

Now， when Clare and I are out together， I can see the exact same sequence play out on the faces of people we pass. Clare knows and understands that reaction very， very well. But on she marches.

Clare embodies that mystery of human existence—the mixture of delight and emotional hardship each of us lives daily. Somehow， the crushing suffering that Clare’s birth seemed to foretell for her and her family turned out instead to be substantial joy.

Not that all is brightness： We alternately ache at the struggles she faces and revel in the delight her unique spirit brings. Some people are able and willing not just to turn away， but to get close enough to know her， and they are always rewarded.

Where we live， in Ontario， physicians encourage free 12）prenatal screening for a number of conditions. Given a finding of Down syndrome， most parents decide to terminate the pregnancy.

I understand that， having felt the same things after Clare’s birth： uncertainty and fear， and the desire to have a normal， healthy child. But the fundamental joys of being a parent are not tied simply to good grades， first-place athletic ribbons， 13）sophistication or high-paying jobs.

Parenting is foremost about loving and giving， and we have been honoured to have been able to love and give to Clare. And although we did not expect it given her disabilities， our daughter and her abilities have taught us more about these two gifts than we could have imagined. She’s loved， and given， right back.

If you do receive an unexpected prenatal diagnosis， or give birth to a child with Down syndrome， take pause and explore. You might end up in the Netherlands instead of Italy， but it will be the start of a beautiful journey.

某天，我在車庫角落的一堆雜物里翻找著，想找一件園藝工具。就在我發現它的時候，突然響起一聲像兩個椰子猛地撞擊在一起的聲響，緊接著我的額頭感到一股隱隱跳突的鈍痛感。

過了好一會兒，我才意識到原來有一把鐵鏟從墻上掉下來砸到了我。捂著我那陣陣發痛的前額，我搖搖晃晃地回到屋里，心里怒火中燒，因為疼痛和那完全自作自受的屈辱感。

廚房里坐著我那14歲的女兒——克萊爾，她正在享受午餐碗里的脆谷樂。看到我，她如往常那樣微笑著說道：“噢，你好，爸爸。”

當看到我痛苦不堪時，她馬上站起走過來看我。我收到了一個溫柔的擁抱，一個輕柔的吻，還有一下輕輕的揉撫，按在我那個新長出來的大笨狼懷爾式雞蛋狀大腫包上。雖然她再沒說什么話，但我知道她正通過她的呵護來告訴我，我備受愛護。

克萊爾出生后不久，我們便得知她患有唐氏綜合征。妻子和我都不太了解這種病，然而當地唐氏綜合征協會的某個人向我們舉出了一個老生常談的比喻：一個患有唐氏綜合征孩子的誕生就像是預定了一趟渴望已久的奔赴羅馬的旅程，但下飛機時你卻發現去了阿姆斯特丹——雖然與期望有所不同，但還不錯。

這話在當時對我們無甚幫助，但一想到將來她有著未知的殘疾障礙，我們就感到膽怯和心慌。我們緊緊地抱著其他年幼的孩子，一起哭泣。

現在到了九年級，克萊爾和她的大部分同齡人相比在體格上和智力上都有所不足。……