“龙妈妈”的哀歌

by Emily Rapp

My son， Ronan， looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little 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.

我的儿子罗南看着我，并且扬起了一边的眉毛。他的双眼明亮有神。“罗南”在爱尔兰语里是“小海豹”的意思，这名字很适合他。

我不想再写下去了，不想谈到那可怕的结局：我的儿子现在18个月大，他很可能活不到三岁。罗南生下来就有泰—萨克斯症——一种罕见的基因缺陷。他会逐渐退化成植物人状态。他会瘫痪、癫痫抽搐、丧失所有知觉，最后死去。无药可医、无法可治。

作为父母，明知要失去自己的孩子，忍受这日渐一日的痛苦煎熬，孤立无助，毫无希望，你能怎么做？

沮丧？当然。但并非丧失理智，过程中还是让人在这种生命体验中深有感触，从悲伤、无助中勇敢前行，不但体会到为人父母的那份挚爱，还真正思考何以为人的问题。

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.

育儿指南，自然而然，就是为未来准备的。我知道。我阅读所有的育儿杂志。在我怀孕的时候，我翻遍了所有能找到的育儿指南。我和丈夫思考过上面的很多问题：母乳喂养能促进大脑发育吗？音乐教育能提高认知能力吗？上好的幼儿园能有助他上好的大学吗？我列了清单，计划着，谋划着，盼望着。未来，未来，未来。

我们从没想到自己的孩子居然没有未来。我在孕期检查时进行的泰—萨克斯症测试的结果是阴性的。我们的遗传顾问认为我无需做这项检查，因为我不是犹太人，而人们认为德系犹太人患上这种病的风险才更大。因为对这样的问题有某种过分的担忧，我坚持做了检查，一共做了两次，每次的结果都是阴性。

我们的育儿计划、我们的清单，罗南出生前我读的所有指南，现在全都毫无意义了。无论我们为罗南做什么——选择有机食物还是非有机食物，用尿布还是纸尿片，跟我们睡还是单独睡，他都会死。所有这些曾经都那么重要的决定，已经无关紧要。

所有父母都希望自己的孩子成功、成材。我们送自己的孩子上音乐课、亲子游泳课，因为我们希望他们能显露出某些惊人天赋，令他们出类拔萃，也让我们这些自豪的父母超群脱俗。传统的养育方式自然希望孩子有这样一个未来：比父母长寿，最好能名成利就，甚至实现一番丰功伟绩。蔡美儿的《虎妈战歌》也不过是一本为希望“教”子成龙的父母所提供的最新指南手册罢了。它生动地描述了这样一个观点：对孩子进行良好、谨慎的投资，必将换来一个幸福的结果，美好的未来。

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.

但我已与这种未来无缘，优异的高考成绩、手执哈佛毕业证快步跑到台上的种种憧憬也已经与罗南无关。我们不期待罗南让我们感到自豪。我们不指望投资在未来有所回报。我们扔掉了儿童成长里程碑曲线图，我们也不再看儿科医生办公室里的育儿指南。罗南给予了我们一种可怕的自由，让我们放弃了期望，他让我们走进了一个神奇的世界，里面不再有目标，不再有荣誉要争取，不再需要监督、讨论和比较了。

但一天天的生活总是很平静，甚至很幸福。我每天和儿子是这样度过：拥抱、喂奶、小睡。他喜欢的话，可以看电视；他每顿都可以吃布丁和芝士蛋糕。我们家很宽容。我们尽力为孩子做到最好，喂他新鲜食物，给他刷牙，保证他整洁、暖和、休息得好，还有……健康？呃，我们做不到。这里唯一的任务就是爱，我们告诉罗南我们爱他，不管他听不听得懂。我们鼓励他做自己能做到的事，尽管他和我们不一样，他没有自我，也没有野心抱负。

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.

成功这个词在我们的文化中有特定的理解，按照这种方式，罗南注定无法成材。他永远不会走路，也永远学不会叫“妈妈”，我也永远不会变成虎妈。绝症儿童的父母和其他父母截然不同。我们的目标简单又可怕：让自己的孩子活着拥有最少的痛苦、最多的尊严。我们不替孩子谋划走向光明璀璨的未来，而是看着他们早早走进坟墓。我们准备失去孩子，然后，令人无法想象地在撕心裂肺的痛楚中艰难度日。这需要一股新的狠劲，一种新的思维，以全新的动物比喻。我们是龙父母：凶猛、忠诚又爱得极深。我们的经历教会我们，如何为当下而养育孩子，为养而养，为了养育行为背后的人类本性，尽管这和传统至理忠言背道而驰。

没人向龙父母请教育儿经，我们太恐怖了。我们沉浸在本能的忧伤中，无法排遣，进退维谷。大多数家长以为理所当然的事情和我们毫不相干，坦白地讲，我们甚至认为有点愚蠢。我们谈论的内容让人望而生畏，不是开玩笑的。谈论关于哪种抗癫痫药最有效或者如何给吞咽困难的孩子喂饭这样的话题无异于在晚宴或操场上喷火。怪异程度好比斯波克医生突然化身阿尔·戈尔，我们揭示难以忽视的真相，预测灾难。

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.

现状是：父母们，特别是在美国，都希望自己成为超人，培养出鹤立鸡群的孩子，不希望和我们有同样的经历。然而，对于每个父母、每个孩子，一直以来的真相是：没什么是永恒不变的。

如果能让儿子活下来，我愿穿过烈火熊熊的隧道。如果能改变儿子的命运，我愿仿效大卫，冒险带上石子和弹弓奔赴狭窄的战场对抗巨人歌利亚。但这些都不会发生。我想大声咆哮，痛斥这个荒谬的疾病是多么不公平，但事实不会改变。我能做的就是尽可能地保护儿子，让他免受痛苦，然后最终经历世上最艰难的事——大多数父母都会庆幸自己永远不需要做的事：我会爱我的儿子，直到他生命终结，然后放手让他走。

但今天，罗南还活着，他的气息像香甜的稻米。他黄绿色的眼珠子里映着我的影子。我是他的影子，他不是我的影子，我相信，原本应该如此。这是个爱的故事，像所有伟大的爱的故事一样，这也是个失去的故事。我明白到，为母之道就是爱自己的孩子，就在今天。此时此刻。事实上，对于任何父母，任何地方，那就是全部所在。