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(kù)角落的一堆雜物里翻找著，想找一件園藝工具。就在我發(fā)現(xiàn)它的時(shí)候，突然響起一聲像兩個(gè)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(huì)兒，我才意識(shí)到原來(lái)有一把鐵鏟從墻上掉下來(lái)砸到了我。捂著我那陣陣發(fā)痛的前額，我搖搖晃晃地回到屋里，心里怒火中燒，因?yàn)樘弁春湍峭耆宰髯允艿那韪小?/p>

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?？吹轿?，她如往常那樣微笑著說道：“噢，你好，爸爸。”

當(dāng)看到我痛苦不堪時(shí)，她馬上站起走過來(lái)看我。我收到了一個(gè)溫柔的擁抱，一個(gè)輕柔的吻，還有一下輕輕的揉撫，按在我那個(gè)新長(zhǎng)出來(lái)的大笨狼懷爾式雞蛋狀大腫包上。雖然她再?zèng)]說什么話，但我知道她正通過她的呵護(hù)來(lái)告訴我，我備受愛護(hù)。

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(dāng)?shù)靥剖暇C合征協(xié)會(huì)的某個(gè)人向我們舉出了一個(gè)老生常談的比喻：一個(gè)患有唐氏綜合征孩子的誕生就像是預(yù)定了一趟渴望已久的奔赴羅馬的旅程，但下飛機(jī)時(shí)你卻發(fā)現(xiàn)去了阿姆斯特丹——雖然與期望有所不同，但還不錯(cuò)。

這話在當(dāng)時(shí)對(duì)我們無(wú)甚幫助，但一想到將來(lái)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(xiàn)在到了九年級(jí)，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。她的時(shí)間概念不太好，但她的算術(shù)不錯(cuò)，能夠解決簡(jiǎn)單的加法問題，能用可愛的句子說話，樂意閱讀，只需要在新詞上給她點(diǎn)幫助。萬(wàn)幸的是，她一直以來(lái)身體健康。

我們無(wú)法理解的是她給這個(gè)家?guī)?lái)的豐盛恩惠?？巳R爾的幽默感讓人愉快（她是個(gè)控制不住的纏人和愛笑的小家伙），而且她總是時(shí)刻準(zhǔn)備好加入任何冒險(xiǎn)，帶著她的招牌說法——“算上我！”

她坦然地展示出純凈的靈魂、開闊的胸懷和仁慈善良，不像我們這些“正?！比四菢佑肋h(yuǎn)藏在面具和傷疤背后。她愛玩橄欖球（還有足球和網(wǎng)球），而且能把棒球擊出很遠(yuǎn)一段距離。

她喜歡蘇打餅和健怡可樂。她的畫作曾成功在藝術(shù)展上售出。她能高聲跟唱如《音樂之聲》之類的影片里的歌曲，她低沉和吼叫的發(fā)音大部分都能對(duì)準(zhǔn)歌詞和調(diào)子。

她很能感同身受，能以一種我沒法做到的方式感受到他人在身體上、情感上和精神上的不適。她總能找到方法去撫慰他人的苦楚；我們這個(gè)感恩之家稱她為“治療者”。

在我的成長(zhǎng)中，要遇到一個(gè)唐氏綜合征患者并非尋常之事，因?yàn)槎鄶?shù)患者都被送進(jìn)殘障人士院舍里生活。當(dāng)我確實(shí)見到這樣的人時(shí)，我會(huì)本能地多看上一會(huì)兒，因?yàn)槲夷軓钠洳綉B(tài)、體形、面部特征感受到一些不同尋常之處。一旦確認(rèn)后，我會(huì)馬上轉(zhuǎn)移視線，匆匆離開。

現(xiàn)在，當(dāng)克萊爾和我一起外出時(shí)，我能看到過往的人臉上顯露出和我以前一模一樣的表情變化?？巳R爾對(duì)那些反應(yīng)清楚得很，明白得很。但她堅(jiān)定地往前走。

克萊爾體現(xiàn)了人類生存的一份奧秘——我們每個(gè)人每一天的生活都糅合了喜悅和情感上的困苦。不知怎的，克萊爾的誕生本應(yīng)會(huì)給她和她的家庭帶來(lái)毀滅性的苦楚，結(jié)果卻被替換成巨大的歡樂。

并不是說一切都很順利：我們一時(shí)為她所面對(duì)的奮斗感到心痛，一時(shí)又為她獨(dú)特的靈魂所帶來(lái)的歡樂感到欣喜。有些人能夠且愿意停留下來(lái)，接近她以了解她，并總能獲得意外驚喜。

我們住的地方，在安大略省，醫(yī)師建議針對(duì)一些情況進(jìn)行免費(fèi)的產(chǎn)前篩查。如果發(fā)現(xiàn)了唐氏綜合征，大部分父母會(huì)選擇終止懷孕。

我對(duì)此很能理解，在克萊爾出生后也一直有著同樣的感受：不確定性和恐懼，對(duì)一個(gè)正常健康孩子的渴望。但為人父母最基本的快樂并不只源于好成績(jī)、第一名的運(yùn)動(dòng)綬帶、高雅世故或高薪工作。

為人父母最重要的是關(guān)于愛和付出，而我們一直都為有能力去愛克萊爾和為她付出而感到光榮。雖然考慮到她的殘疾障礙，我們也沒什么期望，但我們的女兒和她的能力，卻超乎想象地教會(huì)了我們更多有關(guān)愛與付出的道理。她也以愛和付出回應(yīng)我們。

如果你確實(shí)收到一份出乎意料的產(chǎn)前檢查結(jié)果，或者生下了患有唐氏綜合征的孩子，請(qǐng)停下來(lái)，展開探索。你可能最終去了荷蘭而不是意大利，但這將會(huì)是一趟美麗旅程的開端。