“龍媽媽”的哀歌

by Emily Rapp

My son， Ronan， looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “l(fā)ittle seal” in Irish and it suits him.

I want to stop here， before the dreadful 1）hitch： my son is 18 months old and will likely die before his third birthday. Ronan was born with 2）Tay-Sachs， a rare genetic disorder. He is slowly regressing into a vegetative state. Hell become paralyzed， experience 3）seizures， lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net， without a future， knowing that you will lose your child， bit by torturous bit？

Depressing？ Sure. But not without wisdom， not without a profound understanding of the human experience or without hard-won lessons， forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

我的兒子羅南看著我，并且揚起了一邊的眉毛。他的雙眼明亮有神?！傲_南”在愛爾蘭語里是“小海豹”的意思，這名字很適合他。

我不想再寫下去了，不想談到那可怕的結(jié)局：我的兒子現(xiàn)在18個月大，他很可能活不到三歲。羅南生下來就有泰—薩克斯癥——一種罕見的基因缺陷。他會逐漸退化成植物人狀態(tài)。他會癱瘓、癲癇抽搐、喪失所有知覺，最后死去。無藥可醫(yī)、無法可治。

作為父母，明知要失去自己的孩子，忍受這日漸一日的痛苦煎熬，孤立無助，毫無希望，你能怎么做？

沮喪？當然。但并非喪失理智，過程中還是讓人在這種生命體驗中深有感觸，從悲傷、無助中勇敢前行，不但體會到為人父母的那份摯愛，還真正思考何以為人的問題。

Parenting advice is， by its nature， futuredirected. I know. I read all the parenting magazines. During my pregnancy， I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised： will breastfeeding enhance his brain function？ Will music class improve his 4）cognitive skills？ Will the right preschool help him get into the right college？ I made lists. I planned and plotted and hoped. Future， future， future.

We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative； our genetic counselor didnt think I needed the test， since Im not Jewish and Tay-Sachs is thought to be a greater risk among 5）Ashkenazi Jews. Being somewhat obsessive about such matters， I had it done anyway， twice. Both times the results were negative.

Our parenting plans， our lists， the advice I read before Ronans birth make little sense now. No matter what we do for Ronan—choose organic or non-organic food； cloth 6）diapers or disposable； attachment parenting or sleep training—he will die. All the decisions that once mattered so much， dont.

All parents want their children to prosper， to matter. We enroll our children in music class or take them to “Mommy and Me” swim class because we hope they will 7）manifest some fabulous talent that will set them—and therefore us， the proud parents—apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful， perhaps even achieves something spectacular. Amy Chuas 8）Battle Hymn of the Tiger Mother is only the latest handbook for parents hoping to guide their children along this path. Its animated by the idea that good， careful investments in your children will pay off in the form of happy endings， rich futures.

育兒指南，自然而然，就是為未來準備的。我知道。我閱讀所有的育兒雜志。在我懷孕的時候，我翻遍了所有能找到的育兒指南。我和丈夫思考過上面的很多問題：母乳喂養(yǎng)能促進大腦發(fā)育嗎？音樂教育能提高認知能力嗎？上好的幼兒園能有助他上好的大學(xué)嗎？我列了清單，計劃著，謀劃著，盼望著。未來，未來，未來。

我們從沒想到自己的孩子居然沒有未來。我在孕期檢查時進行的泰—薩克斯癥測試的結(jié)果是陰性的。我們的遺傳顧問認為我無需做這項檢查，因為我不是猶太人，而人們認為德系猶太人患上這種病的風(fēng)險才更大。因為對這樣的問題有某種過分的擔(dān)憂，我堅持做了檢查，一共做了兩次，每次的結(jié)果都是陰性。

我們的育兒計劃、我們的清單，羅南出生前我讀的所有指南，現(xiàn)在全都毫無意義了。無論我們?yōu)榱_南做什么——選擇有機食物還是非有機食物，用尿布還是紙尿片，跟我們睡還是單獨睡，他都會死。所有這些曾經(jīng)都那么重要的決定，已經(jīng)無關(guān)緊要。

所有父母都希望自己的孩子成功、成材。我們送自己的孩子上音樂課、親子游泳課，因為我們希望他們能顯露出某些驚人天賦，令他們出類拔萃，也讓我們這些自豪的父母超群脫俗。傳統(tǒng)的養(yǎng)育方式自然希望孩子有這樣一個未來：比父母長壽，最好能名成利就，甚至實現(xiàn)一番豐功偉績。蔡美兒的《虎媽戰(zhàn)歌》也不過是一本為希望“教”子成龍的父母所提供的最新指南手冊罷了。它生動地描述了這樣一個觀點：對孩子進行良好、謹慎的投資，必將換來一個幸福的結(jié)果，美好的未來。

But I have abandoned the future， and with it any visions of Ronans scoring a perfect 9）SAT or sprinting across a stage with a Harvard diploma in his hand. Were not waiting for Ronan to make us proud. We dont expect future returns on our investment. Weve chucked the graphs of developmental milestones and we avoid parenting magazines at the 10）pediatricians office. Ronan has given us a terrible freedom from expectations， a magical world where there are no goals， no prizes to win， no outcomes to monitor， discuss， compare.

But the day-to-day is often peaceful， even blissful. This was my day with my son： cuddling， feedings， naps. He can watch television if he wants to； he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid， feed him fresh food， brush his teeth， make sure hes clean and warm and well rested and ... healthy？ Well， no. The only task here is to love， and we tell him we love him， not caring that he doesnt understand the words. We encourage him to do what he can， though unlike us he is without ego or ambition.

但我已與這種未來無緣，優(yōu)異的高考成績、手執(zhí)哈佛畢業(yè)證快步跑到臺上的種種憧憬也已經(jīng)與羅南無關(guān)。我們不期待羅南讓我們感到自豪。我們不指望投資在未來有所回報。我們?nèi)拥袅藘和砷L里程碑曲線圖，我們也不再看兒科醫(yī)生辦公室里的育兒指南。羅南給予了我們一種可怕的自由，讓我們放棄了期望，他讓我們走進了一個神奇的世界，里面不再有目標，不再有榮譽要爭取，不再需要監(jiān)督、討論和比較了。

但一天天的生活總是很平靜，甚至很幸福。我每天和兒子是這樣度過：擁抱、喂奶、小睡。他喜歡的話，可以看電視；他每頓都可以吃布丁和芝士蛋糕。我們家很寬容。我們盡力為孩子做到最好，喂他新鮮食物，給他刷牙，保證他整潔、暖和、休息得好，還有……健康？呃，我們做不到。這里唯一的任務(wù)就是愛，我們告訴羅南我們愛他，不管他聽不聽得懂。我們鼓勵他做自己能做到的事，盡管他和我們不一樣，他沒有自我，也沒有野心抱負。

Ronan wont prosper or succeed in the way we have come to understand this term in our culture； he will never walk or say “Mama，” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible： to help our children live with minimal discomfort and maximum 11）dignity. We will not launch our children into a bright and promising future； but see them into early graves. We will prepare to lose them and then， impossibly， to live on after that gutting loss. This requires a new 12）ferocity， a new way of thinking， a new animal. We are dragon parents： fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now， for the sake of parenting， for the humanity 13）implicit in the act itself， though this runs counter to traditional wisdom and advice.

Nobody asks dragon parents for advice； were too scary. Our grief is primal， and 14）unwieldy， and embarrassing. The certainties that most parents face are 15）irrelevant to us， and frankly， kind of silly. Our narratives are grisly， the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are 16）tantamount to breathing fire at a dinner party or on the playground. Like 17）Dr. Spock suddenly possessed by 18）Al Gore， we offer inconvenient truths and foretell disaster.

成功這個詞在我們的文化中有特定的理解，按照這種方式，羅南注定無法成材。他永遠不會走路，也永遠學(xué)不會叫“媽媽”，我也永遠不會變成虎媽。絕癥兒童的父母和其他父母截然不同。我們的目標簡單又可怕：讓自己的孩子活著擁有最少的痛苦、最多的尊嚴。我們不替孩子謀劃走向光明璀璨的未來，而是看著他們早早走進墳?zāi)?。我們準備失去孩子，然后，令人無法想象地在撕心裂肺的痛楚中艱難度日。這需要一股新的狠勁，一種新的思維，以全新的動物比喻。我們是龍父母：兇猛、忠誠又愛得極深。我們的經(jīng)歷教會我們，如何為當下而養(yǎng)育孩子，為養(yǎng)而養(yǎng)，為了養(yǎng)育行為背后的人類本性，盡管這和傳統(tǒng)至理忠言背道而馳。

沒人向龍父母請教育兒經(jīng)，我們太恐怖了。我們沉浸在本能的憂傷中，無法排遣，進退維谷。大多數(shù)家長以為理所當然的事情和我們毫不相干，坦白地講，我們甚至認為有點愚蠢。我們談?wù)摰膬?nèi)容讓人望而生畏，不是開玩笑的。談?wù)撽P(guān)于哪種抗癲癇藥最有效或者如何給吞咽困難的孩子喂飯這樣的話題無異于在晚宴或操場上噴火。怪異程度好比斯波克醫(yī)生突然化身阿爾·戈爾，我們揭示難以忽視的真相，預(yù)測災(zāi)難。

And theres this： parents who， particularly in this country， are expected to be superhuman， to raise children who outpace all their peers， dont want to see what we see. The long truth about their children， about themselves： that none of it is forever.

I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock（19）à la 20）David and Goliath） if it would make a difference. But it wont. I can roar all I want about the unfairness of this ridiculous disease， but the facts remain. What I can do is protect my son from as much pain as possible， and then finally do the hardest thing of all， a thing most parents will thankfully never have to do： I will love him to the end of his life， and then I will let him go.

But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around， and this is， I believe， as it should be. This is a love story， and like all great love stories， it is a story of loss. Parenting， Ive come to understand， is about loving my child today. Now. In fact， for any parent， anywhere， thats all there is.

現(xiàn)狀是：父母們，特別是在美國，都希望自己成為超人，培養(yǎng)出鶴立雞群的孩子，不希望和我們有同樣的經(jīng)歷。然而，對于每個父母、每個孩子，一直以來的真相是：沒什么是永恒不變的。

如果能讓兒子活下來，我愿穿過烈火熊熊的隧道。如果能改變兒子的命運，我愿仿效大衛(wèi)，冒險帶上石子和彈弓奔赴狹窄的戰(zhàn)場對抗巨人歌利亞。但這些都不會發(fā)生。我想大聲咆哮，痛斥這個荒謬的疾病是多么不公平，但事實不會改變。我能做的就是盡可能地保護兒子，讓他免受痛苦，然后最終經(jīng)歷世上最艱難的事——大多數(shù)父母都會慶幸自己永遠不需要做的事：我會愛我的兒子，直到他生命終結(jié)，然后放手讓他走。

但今天，羅南還活著，他的氣息像香甜的稻米。他黃綠色的眼珠子里映著我的影子。我是他的影子，他不是我的影子，我相信，原本應(yīng)該如此。這是個愛的故事，像所有偉大的愛的故事一樣，這也是個失去的故事。我明白到，為母之道就是愛自己的孩子，就在今天。此時此刻。事實上，對于任何父母，任何地方，那就是全部所在。