Stories from a home for terminally ill children | Kathy Hull

翻译人员: Mengyu Zheng 校对人员: Haoliang Chen

I want to introduce you to some very wise kids that I've known,

我想向你们介绍几位 我认识的非常聪明的孩子，

but first I want to introduce you to a camel.

不过我想先介绍一头骆驼，

This is Cassie, a therapy camel visiting one of our young patients

凯西，一头用于治疗的骆驼， 正在病房里探望我们

in her room,

的一位年轻病人

which is pretty magical.

看起来挺不可思议的吧。

A friend of mine raises camels at his ranch in the Santa Cruz Mountains.

我有个朋友在圣克鲁斯山上 的一个牧场里养骆驼，

He has about eight of them,

养了大概八头，

and he started 30 years ago

他从 30 年前就开始养骆驼了，

because he thought horses were too mundane.

因为他觉得养马太普通了。

John is an out-of-the-box thinker,

约翰是一个独辟蹊径的人，

which explains why the two of us have been such good friends

这也是为什么我们俩

all of our lives.

一直是好朋友。

Over the years, I've convinced him to shuttle those sweet furry beasts

这些年来，我成功说服他 每隔一段时间就把

up to hang out with our sick kids from time to time.

这些毛绒绒又可爱的动物送来， 和我们的小病人们玩耍。

Talking to John, I was surprised to learn

和约翰谈过以后，我才惊讶地发现，

that camels have an average life expectancy of 40 to 50 years.

骆驼的平均寿命有 40 到 50 年。

The life expectancy of many of the children with whom I work

而我照看的许多孩子

is less than a year.

预期寿命不足一年。

This is a picture of the George Mark Children's House,

这是乔治马可儿童疗养院，

the first pediatric palliative respite care center

美国的第一家

to open in the United States.

儿童善终护理中心，

I founded it in 2004,

这家护理中心是我在 2004 年创立的，

after years of working as a psychologist

我在儿童重症监护室

on pediatric intensive care units,

做了多年的心理医生之后，

frustrated with the undignified deaths that so many children experienced

面对这么多孩子痛苦的离世 以及他们的家庭遭受的折磨

and their families had to endure.

我感到非常难过。

As I sat with families whose children were at the end of their lives,

当我坐下来，和这样的家庭， 以及他们要离世的孩子待在一起时，

I was acutely aware of our surroundings.

我深深地被这种悲伤氛围所包围。

While the elevated train rumbled overhead on its track,

高架火车在轨道上轰隆驶过，

quite literally the room reverberated with each passing train car.

房间里回荡着 每节车厢飞驰的声音。

The lights on the ward were fluorescent and too bright.

病房的荧光灯散发着刺眼的光，

Monitors beeped, as did the elevator,

监视屏嘟嘟作响，电梯在到达后

noisily announcing its arrival.

发出嘈杂的声音。

These families were experiencing

这些家庭正经历着

some of the most excruciating moments of their lives,

他们人生中最受折磨的时刻，

and I so wanted them to have a more peaceful place

而我多么希望他们 能有个更安静的地方，

in which to say a last goodbye to their young daughters and sons.

和他们年幼的子女 最后说一声再见。

Surely, I thought,

于是我想，

there must be a better spot than a hospital intensive care unit

对于这些孩子来说， 一定有比重症监护室更好的地方

for children at the end of their lives.

让他们走完生命的最后一段路。·

Our children's house

我们的儿童疗养院

is calm and nurturing.

是平静的、充满关怀的，

It's a place where families can stay together

家庭成员可以聚在一起，

to enjoy quality time with their children,

陪着他们的孩子度过这段美好时光。

many of whom are there for respite stays,

很多孩子是暂时住在这里，

some with repeated visits over a span of many years.

有一些孩子则多年内经常住进来。

We call those kids our frequent flyers.

这些孩子是我们的“常客”。

Rather than the bright, noisy quarters of the hospital,

和医院明亮而嘈杂的病房相比，

their rooms are calm and comfortable,

这些孩子的房间安宁而舒适，

with actual living spaces for the families,

有真正可以和家人在一起的空间、

a sanctuary of gardens

一片无人打扰的花园

and a wonderful outdoor playground

和超棒的户外操场，

with special structures for children with physical limitations.

专门为有身体缺陷的孩子们设计。

This sweet baby Lars

这个可爱的小宝宝叫拉斯，

came to us directly from a hospital intensive care unit.

是从医院的重症监护室 直接转到我们这里的。

Imagine hearing the heartbreaking news

想象一下如果我们 听到这个让人心碎的消息，

that none of us would ever want to hear.

这个我们谁都不会愿意听到的消息。

His parents had been told that Lars had a brain anomaly

他的父母得知拉斯的大脑畸形，

that would keep him from ever swallowing,

这种症状让他在吞咽、

walking, talking

行走、说话、

or developing mentally.

以及心智发育方面都会受到影响。

Recognizing what little chance he had for survival,

得知了他生存的几率有多么渺茫后，

his parents chose to focus on the quality of time

他的父母决定着眼当下， 让他们一起相处

that they could spend together.

的时光更美好快乐。

They moved into one of our family apartments

他们搬进了我们的家庭公寓，

and treasured each day that they had,

珍惜在一起的每一天，

which were far too few.

哪怕这时间并不长。

Lars's life was brief, to be sure,

拉斯的生命无疑十分短暂，

mere weeks,

仅有短短的几周，

but it was calm and comfortable.

但他的生活很平静、很舒服。

He went on hikes with his parents.

他和父母一起去郊游。

The time that he spent in the pool with our aquatic therapist

他和我们的水疗专家 在泳池里度过的时间

lessened the seizures he was experiencing

减轻了他的病情发作，

and helped him to sleep at night.

并帮助他在夜晚入睡。

His family had a peaceful place

他的家人也有了一个安宁的地方，

in which to both celebrate his life

可以庆祝他的降生，

and mourn his death.

同时哀悼他的离世。

It has been five years since Lars was with us,

拉斯和我们在一起 已经是五年以前的事了。

and in that time,

这五年来，

his family has welcomed

他的父母又有了

a daughter and another son.

一个女儿和一个小儿子。

They are such a powerful testament

专业儿童安养院

to the positive outcome that specialized children's hospice care can create.

能带来的积极成果在他们身上 得到了完美的体现。

Their baby's physical discomfort was well managed,

他们的孩子身体上的 痛苦被很好地控制了，

giving all of them the gift of time to be together in a beautiful place.

让他们可以在一个 美丽的地方相聚。

I'm going to talk to you now

我现在要给你们讲一个

about the elephant

大象的故事，

rather than the camel in the room.

这次不是骆驼了。

Very few people want to talk about death,

很少有人愿意谈论死亡，

and even fewer about children's death.

更不愿说起小孩子的死亡。

Loss of a child,

失去一个孩子，

especially for those of us who have our own children,

尤其对我们这些自己 有孩子的人来说，

is frightening,

是让人痛心的。

more than frightening,

不仅是痛心，

paralyzing,

更让人无法行动、

debilitating,

虚弱无力、

impossible.

难以面对。

But what I've learned is this:

但是我所学到的是：

children don't stop dying

孩子们不会因为

just because we the adults

我们这些成年人不愿接受

can't comprehend the injustice of losing them.

失去他们的这种不公平， 就能延续生命。

And what's more,

更重要的是，

if we can be brave enough

如果我们足够勇敢，

to face the possibility of death,

敢于接受即使

even among the most innocent,

最无辜的生命也会有死亡的可能，

we gain an unparalleled kind of wisdom.

我们将获得无与伦比的智慧。

我们拿克里斯托来举个例子。

Take Crystal, for example.

She was one of the first children to come for care

她是我们疗养院里开业以来

after we opened our doors.

最早住进来的孩子之一。

She was nine when she arrived,

她来的时候只有九岁，

and her neurologist expected that she might live another two weeks.

而她的神经医生预计 她只有两周的寿命了。

She had an inoperable brain tumor,

她的脑瘤无法进行手术，

and her decline had really accelerated

而在她来到我们这里前的一周，

in the week before she came to us.

她的病情已经恶化了。

After settling into her room,

我们把她安置在她的房间里，

dressed entirely in pink and lavender,

给她装扮了一身的粉色和淡紫色，

surrounded by the Hello Kitty accessories that she loved,

身边还环绕着她最爱的凯蒂猫配饰。

she spent the next several days

接下来的几天里，

winning over the hearts of every staff member.

她赢得了每个工作人员的喜爱。

Bit by bit, her condition stabilized,

她的病情一点点稳定了下来，

and then to our astonishment,

然后让我们震惊的是，

she actually improved.

她的病情甚至有了好转。

There were a variety of factors

克里斯托的病情好转

that contributed to Crystal's improvement

可能是由很多不同的因素造成的，

which we later came to call the "George Mark bump,"

我们后来称其为“乔治马克碰撞”，

a lovely, not uncommon phenomenon

一种有爱的、并不罕见的现象，

where children outlive the prognoses of their illnesses

如果孩子们不住在医院里，

if they're outside of the hospital.

会比病情预期活得更长。

The calmer atmosphere of her surroundings,

周围更安宁的环境、

tasty meals that were fixed often to accommodate her requests,

根据他们的需要 而准备的更可口的饭菜，

the resident pets,

还有各种宠物，

the therapy dog and rabbit spent lots of cozy time with Crystal.

我们的治疗犬和兔子也陪着 克里斯托度过了舒适快乐的时光。

After she had been with us for about a week,

她在我们这里住了大概一周之后，

she called her grandmother,

给她的祖母打了电话，

and she said,

告诉她，

"Gee, I'm staying in a great big house,

“天啊，我住在一栋超棒的大房子里，

and there's room for you to come, too.

还有房间让你也可以来住。

And guess what?

你猜还有什么？

You don't have to bring any quarters

你一个硬币都不用带，

because the washer and dryer are free."

因为这里的洗衣机 和烘干机都是免费的。”

(Laughter)

（笑声）

Crystal's grandmother soon arrived from out of town,

克里斯托的祖母很快就从城外搬来了，

and they spent the remaining four months of Crystal's life

和克里斯托一起度过了 她生命的最后四个月，

enjoying very special days together.

这是一段非常特殊的日子。

Some days were special because Crystal was outside in her wheelchair

有些日子很特殊，因为克里斯托 可以坐在轮椅上呆在户外，

sitting by the fountain.

坐在喷泉旁边。

For a little girl who had spent most of the year earlier in a hospital bed,

对于一个在医院的病床上 躺了几乎一年的小女孩来说，

being outside counting hummingbirds

能在屋子外面 数着外面的蜂鸟，

made for an amazing time with her grandma,

已经足够她和祖母一起

and lots of laughter.

开心欢笑了。

Other days were special because of the activities

还有一些日子是特殊的，

是因为我们的儿童生活专家 为她设计的活动。

that our child life specialist created for her.

Crystal strung beads and made jewelry for everybody in the house.

克里斯托为这里的每个人 都编了串珠的首饰。

She painted a pumpkin to help decorate for Halloween.

她还在万圣节的时候 帮忙画了一个南瓜。

She spent many excited days planning her tenth birthday,

她花了很多天，兴奋地 为十岁生日做准备。

which of course none of us thought she would ever see.

当然，当时我们没有人 觉得她能看到那一天。

All of us wore pink boas for the occasion,

我们每个人都为她的生日 戴上了粉色的羽毛缎带，

and Crystal, as you can see,

而克里斯托，如你所见，

queen for a day,

那一整天都像女王一样，

wore a sparkly tiara.

戴着亮闪闪的王冠。

One hot morning, I arrived at work

在一个炎热的早晨，我来上班，

and Crystal and her partner in crime, Charlie, greeted me.

克里斯托和她的“作案同伙” 查理和我打招呼。

With some help, they had set up a lemonade and cookie stand

在别人的帮助下， 他们在正门外面摆了一个

outside the front door,

卖柠檬汁和曲奇的小摊，

a very strategic location.

一个非常高明的位置。

I asked Crystal the price of the cookie that I had selected,

我向克里斯托询问 我挑的饼干多少钱，

and she said, "Three dollars."

她说：“三块钱。”

(Laughter)

（笑声）

I said that seemed a bit high for one cookie.

我说一块饼干卖三块钱有点贵啊。

(Laughter)

（笑声）

It was small.

饼干其实很小。

"I know," she acknowledged with a grin,

她咧嘴笑着说：“我知道啊，

"but I'm worth it."

但是我值这个价钱。”

And therein lie the words of wisdom

这是一个小女孩的智慧之语，

of a young girl whose brief life forever impacted mine.

而她短暂的生命将影响我的一生。

Crystal was worth it,

她确实值得。

and shouldn't every child whose life is shortened by a horrific illness

每一个因为可怕的疾病 而过早夭折的孩子们，

be worth it?

难道他们不值得吗？

Together, all of us today

今天在这里的所有人，

我们能为其他孩子提供 和克里斯托一样的特殊照顾，

can offer that same specialized care that Crystal received

by recognizing that children's respite and hospice care

只要我们认识到 孩子们的临终关怀照料

is a critical component missing from our healthcare landscape.

是我们的医疗系统中 缺失的重要一环。

It's also interesting to note

值得说明的是，

that we are able to provide this care

我们提供这样的照料的花费

at about one third of the cost of a hospital intensive care unit,

只是医院重症监护室的三分之一，

and our families don't see a bill.

而且不会向病人家属收取费用。

We are ever grateful to the supporters

我们非常感谢所有的支持者，

who believe in this important work that we're doing.

他们相信我们在做的事至关重要。

The truth is that my colleagues and I

事实上，我和我的同事们，

and the parents and other family members

以及那些得益于我们特殊智慧的

who get to experience this special wisdom

孩子父母和家属们

are in a unique position.

正处于一个特殊的位置。

There are only two freestanding pediatric hospices in the United States,

在美国只有两家私立的儿童关怀中心，

although I'm happy to report that based on our model,

但是我很高兴地告诉你们， 基于我们的模式，

there are 18 others under various stages of development.

已经有 18 家关怀中心正在筹备中。

(Applause)

（鼓掌）

Still, most of the children who die in the United States every year

但是，每年美国大多数去世的孩子们

die in hospital rooms,

还是在医院病房里，

surrounded by beeping machines

在嗡鸣的机器环绕中离开人世。

and anxious, exhausted adults

焦躁而疲惫的大人们

who have no other option

毫无办法，

but to say goodbye under those harsh, institutional lights

只能在医院标配的刺眼灯光下

and among virtual strangers.

和周遭的陌生人一起跟孩子告别。

For comparison's sake,

相比之下，

the United Kingdom,

英国，

which is a country with about one fifth the population of the United States,

仅有美国五分之一的人口，

and about half the size of the state of California,

和相当于半个 加利福尼亚州的土地面积，

has 54 hospice and respite centers.

拥有54家临终关怀机构。

Why is that?

为什么呢？

I've asked myself that question obviously many times.

我无数次地问自己这个问题。

My best guess is that Americans, with our positive can-do attitude

我猜是因为，美国人和 “我们可以”的积极态度

hold the expectation that our medical care system will fix it,

寄希望于我们的医疗系统 可以解决一切问题，

even though it may be a childhood illness for which there is no cure.

哪怕是无法治愈的儿童疾病。

We go to extraordinary measures to keep children alive

我们想尽一切办法让孩子活下去，

when in fact the greatest kindness that we might give them

但是我们能给他们最大的仁慈

would be a peaceful, pain-free

是让他们平静地、毫无痛苦地

end of life.

结束生命。

The transition from cure to care

从治疗到缓和护理的过渡

remains a challenging one for many hospital physicians

对于医院的医生来说很不容易，

whose training has really been about saving lives,

因为他们接受的训练 都是关于如何拯救生命，

not about gently guiding the patient to the end of life.

而不是如何温和地指导 病人面对生命的终结。

The dad of a sweet baby for whom we cared at the end of her life

我们照料过一个 即将逝世的可爱的小宝宝。

certainly captured this dichotomy

她的父亲就感受到了这样的分歧。

when he reflected

他告诉我们，

that there are a lot of people to help you bring an infant into the world

世界上有很多人愿意帮助你 迎接婴儿的降生，

but very few to help you usher a baby out.

但是很少有人能帮助你 送你的孩子离开。

So what is the magic ingredient at George Mark?

那么乔治马克中心 的神奇秘诀是什么呢？

The complex medical diagnoses that bring our young patients to us

那些被复杂的医学诊断 送到我们这里的小病人们，

mean that their lives have often been restricted,

他们的生活通常会受到各种限制。

some to a hospital bed for long periods of time,

有些病人被长期困在病床上，

others to wheelchairs,

有些人只能依靠轮椅活动，

still others to intensive courses of chemotherapy or rehab.

还有一些需要接受大强度的 化疗或者康复治疗。

We make a practice of ignoring those limitations.

我们要做的是无视这些限制。

Our default answer is "yes"

我们的标准回答就是“可以”，

and our default question is, "Why not?"

而我们的标准问题是“为什么不呢？”

That's why we took a young boy

这就是为什么我们带一个小男孩

who wasn't going to live for another baseball season

去看了棒球世界大赛的第五战，

to Game 5 of the World Series.

因为他可能活不到下一个赛季了。

That's why we have a talent show put on by the staff and kids

这就是为什么我们带领 工作人员和孩子们为家人和朋友

for family and friends.

举办了一场才艺演出。

Who wouldn't be enchanted by a young boy playing a piano piece with his feet,

谁看到一个手臂发育不良的 小男孩用脚演奏钢琴

because his arms are atrophied?

不会为之陶醉呢？

That's why we have a prom every year.

这就是为什么我们每年都举办舞会。

It's pretty magical.

这非常神奇。

We started the prom

在听到一位父亲哀婉

after hearing a dad lament

他永远无法在儿子

that he would never pin a boutonniere on his son's tuxedo lapel.

的燕尾服翻领上扣上一朵襟花， 我们开始了正式舞会。

The weeks before the dance,

舞会前的好几周，

the house is in a flurry,

整栋房子一团混乱，

and I don't know who's more excited, the staff or the kids.

我不知道到底谁更激动， 是工作人员还是孩子们。

(Laughter)

（笑声）

The night of the event

这天晚上的活动

involves rides in vintage cars,

有开着老爷车兜风，

a walk on a red carpet

走着红毯

into the great room,

进入华丽的房间，

a terrific DJ

一位了不起的DJ，

and a photographer at the ready

还有一位时刻准备着的摄影师，

to capture pictures of these attendees

拍下参加舞会的成员

and their families.

和他们的家人。

At the end of the evening this year,

今年，在晚会结束的时候，

one of our young, delightful teenaged girls,

我们的一位年轻貌美的女孩，

Caitlin, said to her mom,

凯特琳，对她的妈妈说，

"That was the best night of my whole life."

“这是我此生中最棒的夜晚。”

And that's just the point,

而这就是我们要做的，

to capture the best days and nights,

我们留下了最棒的日日夜夜，

to abolish limitations,

抛开了所有的限制，

to have your default answer be "yes"

让你对所有一切都说“好”，

and your default question be, "Why not?"

对所有一切都问“为什么不呢？”

Ultimately life is too short,

毕竟，生命如此短暂，

whether we live to be 85 years or just eight.

不管我们能活到 85 岁 还是只能活到 8 岁，

Trust me.

相信我，

Better yet, trust Sam.

相信塞姆。

It's not by pretending that death doesn't exist

不是说假装死亡不存在，

that we keep the people,

我们就能保证人们，

especially the little people that we love,

尤其是让那些我们爱着的小孩子

safe.

的安全。

In the end,

归根结底，

we can't control how long any of us lives.

我们控制不了我们能活多久。

What we can control

我们能控制的

is how we spend our days,

是我们怎样度过自己的日子，

the spaces we create,

怎样使用我们创造出的空间，

the meaning and joy that we make.

以及我们存在的意义和快乐。

We cannot change the outcome,

我们不能改变结果，

but we can change the journey.

但是我们可以改变过程。

Isn't it time

是时候承认

to recognize that children deserve

孩子们值得

nothing less than our most uncompromising bravery

我们最无所保留的勇气

and our wildest imagination.

和我们最疯狂的想象力了。

Thank you.

谢谢。

(Applause)

（掌声）