Stories from a home for terminally ill children | Kathy Hull

譯者: ting fang lin 審譯者: Yanyan Hong

我想向你們介紹一些我認識 當中非常聰明的孩子，

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

but first I want to introduce you to a camel.

但是首先請允許我 向你們介紹一隻駱駝。

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

這是凱茲，它是其中一隻拜訪 我們年幼病人的治療駱駝，

in her room,

就在她的房間裡，

which is pretty magical.

這是不是很神奇。

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

在聖塔克魯茲山脈，我的一個朋友 在他的牧場裡飼養駱駝。

He has about eight of them,

他養了八隻。

and he started 30 years ago

他從三十年前開始飼養，

because he thought horses were too mundane.

因為他覺得馬過於平常。

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

約翰有不同於常人的思維方式，

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

這也解釋了為什麼我們是 關係如此好的朋友，

all of our lives.

從始至終。

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

這麼多年來，我已說服他 將他那些可愛的駱駝們帶出牧場，

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

時而與我們那些 病著的孩子互動遊戲。

Talking to John, I was surprised to learn

和約翰聊天時，我驚訝的了解到

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

駱駝的平均壽命長達 40 至 50 年；

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

而我照看的那麼多孩子當中， 他們的壽命很多都

is less than a year.

只有不到一年。

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

這是喬治·馬克兒童中心，

the first pediatric palliative respite care center

這是第一個

在美國成立的 兒童安寧及喘息照護中心。

to open in the United States.

I founded it in 2004,

我在 2004 年成立了這個中心。

after years of working as a psychologist

數年以來，作為一位專職於

小兒科加護病房的心理專家，

on pediatric intensive care units,

frustrated with the undignified deaths that so many children experienced

我挫敗地見證那麼多孩子 毫無尊嚴的死亡，

and their families had to endure.

以及他們的家庭承受著的痛苦。

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

當我坐在孩子的父母身旁， 陪伴他們的孩子度過最後的時光，

I was acutely aware of our surroundings.

我敏銳地意識到我們周圍的 那些嘈雜聲音：

While the elevated train rumbled overhead on its track,

高架火車在鐵軌上發出的轟隆聲；

quite literally the room reverberated with each passing train car.

每次火車經過時病房內都會有回音。

The lights on the ward were fluorescent and too bright.

病房裡的螢光燈過於耀眼。

Monitors beeped, as did the elevator,

監視器嗶嗶響，

電梯提示到達樓層的聲音也是很吵。

noisily announcing its arrival.

These families were experiencing

這些家庭正經歷著

some of the most excruciating moments of their lives,

他們一生中最痛苦的時刻。

and I so wanted them to have a more peaceful place

我無比希望他們 能在一個比較寧靜的地方，

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

和他們還年幼的兒女做最後的告別。

Surely, I thought,

我想，

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

一定會有一個比醫院的加護中心 更好的地方，

for children at the end of their lives.

讓孩子們走完最後的人生。

Our children's house

我們的兒童中心，

is calm and nurturing.

是平靜且十分關愛的。

It's a place where families can stay together

這是一個能讓家人相聚在一起，

to enjoy quality time with their children,

與孩子享受歡樂時光。

many of whom are there for respite stays,

許多病患來這裡做短暫的休養，

some with repeated visits over a span of many years.

有些在數年中多次往返。

We call those kids our frequent flyers.

我們笑稱那些孩子為 我們的飛行常客。

Rather than the bright, noisy quarters of the hospital,

比起醫院裡的刺眼和嘈雜，

their rooms are calm and comfortable,

這裡的房間安靜又舒適，

with actual living spaces for the families,

還有家庭活動空間，

a sanctuary of gardens

一個庇護心靈的花園，

and a wonderful outdoor playground

以及一個很棒的戶外遊樂區，

with special structures for children with physical limitations.

附有為身體受限孩子 準備的特殊設備。

This sweet baby Lars

這個可愛的男孩拉爾斯，

came to us directly from a hospital intensive care unit.

從醫院加護中心直接來到我們這裡。

Imagine hearing the heartbreaking news

想像一下被告知

我們永遠都不想聽到的心碎消息。

that none of us would ever want to hear.

His parents had been told that Lars had a brain anomaly

他的父母被告知拉爾斯有腦部異常，

that would keep him from ever swallowing,

將會導致他永遠不能吞嚥、

walking, talking

走路、講話

or developing mentally.

或智力發展。

Recognizing what little chance he had for survival,

在接受拉爾斯的存活機率 是多麼渺小之後，

his parents chose to focus on the quality of time

他的父母決定善用拉爾斯

與他們能一起度過的剩餘時光。

that they could spend together.

They moved into one of our family apartments

他們搬進我們家庭套房，

and treasured each day that they had,

並且珍惜每一天，

which were far too few.

但是時間實在太少了。

Lars's life was brief, to be sure,

拉爾斯的生命很短暫，準確來說，

mere weeks,

不過幾周，

but it was calm and comfortable.

但是卻十分平靜和舒適。

He went on hikes with his parents.

他和他的父母一起去遠足。

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

與我們水療治療師在水池裡的時間，

lessened the seizures he was experiencing

減輕了拉爾斯的癲癇，

and helped him to sleep at night.

並且幫助他晚上能夠入睡。

His family had a peaceful place

他們一家有一個寧靜的地方，

in which to both celebrate his life

來慶祝他活著的每一天，

and mourn his death.

和哀悼他的離去。

It has been five years since Lars was with us,

拉爾斯已經離開我們五年了，

and in that time,

那五年裡，

他的家庭又迎來了

his family has welcomed

a daughter and another son.

一個女兒和另一個兒子。

They are such a powerful testament

他們強有力的證明了，

兒童特別的臨終看護可以帶來 多大的正面效果。

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

Their baby's physical discomfort was well managed,

我們很細心照料他們孩子 身體上的不舒服，

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

並讓他們在美好的環境裡， 享受禮物般的相處時間。

I'm going to talk to you now

我現在要講的是

about the elephant

房間裡的大象， （不願談的困境）

rather than the camel in the room.

而不是在房間裡的駱駝。

Very few people want to talk about death,

很少人願意談及死亡，

and even fewer about children's death.

更少的人願意談及孩子的死亡。

Loss of a child,

失去一個孩子，

especially for those of us who have our own children,

特別是對我們有孩子的人來講，

is frightening,

是如此可怕。

more than frightening,

更勝於可怕的是，

paralyzing,

令人癱瘓，

debilitating,

使人虛弱，

impossible.

不敢想像。

But what I've learned is this:

但是我清楚的認識到

children don't stop dying

孩子的死亡並不會

just because we the adults

僅僅因為我們成年人，

can't comprehend the injustice of losing them.

不願理解失去他們的不公平而停止。

And what's more,

除此以外，

if we can be brave enough

如果我們勇敢

to face the possibility of death,

面對死亡的可能性，

甚至那些最無辜的孩子們的死亡，

even among the most innocent,

we gain an unparalleled kind of wisdom.

我們將會從中獲得無窮的智慧。

Take Crystal, for example.

以水晶為例，

She was one of the first children to come for care

她是中心成立時，

after we opened our doors.

最早到來的孩子之一。

She was nine when she arrived,

她來時才九歲，

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

她的腦神經科醫生預測她大約 還有兩周的生命。

She had an inoperable brain tumor,

她有一個無法手術的腦部腫瘤，

and her decline had really accelerated

而且在來我們這裡前的一個禮拜裡，

in the week before she came to us.

她身體的衰退已經加劇。

After settling into her room,

她住進房間以後，

dressed entirely in pink and lavender,

她全身換上了粉色和淡紫色的衣服，

surrounded by the Hello Kitty accessories that she loved,

被她深愛的凱蒂貓所包圍著。

she spent the next several days

她在接下來的幾天中，

winning over the hearts of every staff member.

贏得了我們每一個工作人員的心。

Bit by bit, her condition stabilized,

逐漸地，她的情況穩定下來。

and then to our astonishment,

而且令我們吃驚的是，

she actually improved.

她竟然有改善。

There were a variety of factors

有很多因素

that contributed to Crystal's improvement

有助於水晶的改善，

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

我們後來稱之為 「喬治·馬克的碰撞火花」，

a lovely, not uncommon phenomenon

這是一個讓人欣喜， 但並非罕見的現象。

where children outlive the prognoses of their illnesses

如果住在醫院之外的地方，

if they're outside of the hospital.

孩子們比預計活得要更久。

The calmer atmosphere of her surroundings,

她周圍環境的寧靜，

tasty meals that were fixed often to accommodate her requests,

經常滿足她喜好的可口飯菜，

the resident pets,

中心裡的常駐寵物，

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

水晶與中心的狗和兔子度過的 許多舒適時光都提供了療效。

After she had been with us for about a week,

她在我們這裡一星期後，

she called her grandmother,

她打給她的祖母，

and she said,

她說：

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

「哎， 我現在住在一個 很棒的房子裡，

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

而且這裡也有你可以住的地方，

And guess what?

你知道嗎？

You don't have to bring any quarters

你不需要帶任何硬幣，

because the washer and dryer are free."

因為這裡的洗衣機和烘乾機 都是免費的。」

(Laughter)

（笑聲）

Crystal's grandmother soon arrived from out of town,

水晶的祖母很快從外縣市 來到了我們這裡，

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

她陪伴著水晶走過了餘下的四個月，

enjoying very special days together.

一起享受著特別的每一天。

Some days were special because Crystal was outside in her wheelchair

有些天很特別， 因為水晶坐著輪椅來到外面，

坐在噴泉旁。

sitting by the fountain.

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

對於一個以前一直 躺在醫院病床的小女孩來說，

being outside counting hummingbirds

坐在外面數著蜂鳥，

made for an amazing time with her grandma,

與祖母歡聚在一起，

and lots of laughter.

並且開懷的大笑，這是多麼寶貴。

Other days were special because of the activities

其他特殊的日子是因為一些

我們的兒童生活專家特別為她 所準備的活動。

that our child life specialist created for her.

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

水晶將珠子串起來做給 我們每個人的首飾。

She painted a pumpkin to help decorate for Halloween.

她在南瓜上作畫並幫助我們 做萬聖節裝飾。

She spent many excited days planning her tenth birthday,

她花了很多天很興奮的計劃著 她的十歲生日派對，

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

雖然我們都不認為她會活到那時。

All of us wore pink boas for the occasion,

我們所有人都戴上粉色的花圈，

and Crystal, as you can see,

至於水晶，你們可以看到，

queen for a day,

是我們那天的皇后，

wore a sparkly tiara.

戴著一頂閃耀的皇冠。

One hot morning, I arrived at work

某一個炎熱的早晨，我到了中心後，

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

水晶和她的同夥查理向我打招呼。

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

在一些幫助下，他們搭起了 一個賣檸檬汁和餅乾的小攤位，

outside the front door,

就在大門外，

a very strategic location.

一個很明智的地方。

我問水晶我選的餅乾的價格，

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

and she said, "Three dollars."

她說： 「三元美金。」

(Laughter)

（笑聲）

I said that seemed a bit high for one cookie.

我說這對一塊餅乾來講太貴了。

(Laughter)

（笑聲）

It was small.

那塊餅乾很小，

"I know," she acknowledged with a grin,

「我知道。」她嬉笑的回答。

"but I'm worth it."

「但是我值得這三元美金。」

And therein lie the words of wisdom

她說的話對我有很大啟發。

of a young girl whose brief life forever impacted mine.

這一個年幼女孩短暫的一生 永遠影響著我。

Crystal was worth it,

水晶的確值得。

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

難道所有被可怕疾病 縮短生命的孩子，

be worth it?

他們的一生不值得這些嗎？

Together, all of us today

今天，我們在座的所有人

can offer that same specialized care that Crystal received

可以提供和水晶接受到的 一樣的特殊看護，

by recognizing that children's respite and hospice care

只要我們承認 到兒童臨終舒緩看護治療，

is a critical component missing from our healthcare landscape.

是我們的醫療體系中嚴重 缺失的一個項目。

It's also interesting to note

更加值得注意的是，

that we are able to provide this care

我們提供看護治療的費用，

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

只相當於在醫院 加護中心的三分之一。

and our families don't see a bill.

而且我們的家庭收不到任何帳單，

We are ever grateful to the supporters

我們無比感激我們的支持者，

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

他們相信我們工作的重要意義。

The truth is that my colleagues and I

實際上，我和我的同事，

and the parents and other family members

孩子的家長以及他們其他家庭成員，

who get to experience this special wisdom

和我一樣了解這個項目的重要性，

are in a unique position.

但是我們為數極少。

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

目前在美國只有兩個獨立的 兒童臨終照護中心。

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

我欣慰的要報告是， 採用我們的模式，

there are 18 others under various stages of development.

目前有 18 個中心正在 不同階段的建設中。

(Applause)

（掌聲）

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

但是，目前美國每年死亡的兒童，

die in hospital rooms,

大多數在醫院裡結束了生命，

surrounded by beeping machines

被嗶嗶聲的機器

and anxious, exhausted adults

和焦急、精疲力盡的家長包圍著。

who have no other option

他們沒有選擇，

but to say goodbye under those harsh, institutional lights

只能在刺目的醫院燈光 和陌生人的注視下，

and among virtual strangers.

與自己的寶貝說再見。

For comparison's sake,

相比來講，

the United Kingdom,

英國

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

僅有著五分之一的美國人口，

and about half the size of the state of California,

國家也只有半個加州大小，

has 54 hospice and respite centers.

卻有 54 所臨終看護和喘息休養中心。

Why is that?

為什麼呢？

I've asked myself that question obviously many times.

我常常問自己，

我的猜測是我們積極樂觀美國人，

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

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

對目前醫療體系有著 它會逐漸完善這個缺失的期許，

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

即便它是一個無法治愈的幼兒疾病，

We go to extraordinary measures to keep children alive

我們採取幾乎任何措施來 延長孩子的生命，

when in fact the greatest kindness that we might give them

但是事實上我們能給他們 最好的禮物，

would be a peaceful, pain-free

莫過於平靜、沒有痛苦的

end of life.

生命末期。

The transition from cure to care

從治愈轉變為照護的過程，

remains a challenging one for many hospital physicians

對許多醫院的醫生來說 還是一種挑戰。

whose training has really been about saving lives,

醫生認為他們的職責是救人，

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

並不是溫和的引導 他們的病人走向生命結束。

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

一個我們看護的可愛寶寶的父親

確實領會了這個矛盾。

certainly captured this dichotomy

when he reflected

他反映說，

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

有很多人幫助你將你的寶貝 帶到這個世界來，

but very few to help you usher a baby out.

卻很少有人願意幫助你帶他們離去。

So what is the magic ingredient at George Mark?

所以在喬治·馬克有什麼 神奇的成分呢？

The complex medical diagnoses that bring our young patients to us

伴隨著病人來到我們中心的 那些複雜的診斷，

mean that their lives have often been restricted,

意味著他們的生命會被侷限，

some to a hospital bed for long periods of time,

有一些在醫院病床上躺 很長一段時間，

others to wheelchairs,

另外一些在輪椅上，

still others to intensive courses of chemotherapy or rehab.

還有一些需要密集化療和復健。

We make a practice of ignoring those limitations.

我們基本上忽略這些限制。

Our default answer is "yes"

我們的默認答案是「可以」，

and our default question is, "Why not?"

我們的默認問題是 「為什麼不可以？」

That's why we took a young boy

這就是為什麼我們 看護的一個年幼的男孩，

who wasn't going to live for another baseball season

他的生命被預期不會活過 下一個棒球賽季，

to Game 5 of the World Series.

活到世界杯的第五場 （註：大約 10 月底）。

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

這也是為什麼孩子們和員工 舉辦了才藝秀，

for family and friends.

讓他們的家庭和朋友來觀看。

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

誰不會被一個用腳 彈奏鋼琴的小男孩而動容，

because his arms are atrophied?

只因為他的手臂萎縮了？

That's why we have a prom every year.

這就是為什麼我們每年 都有畢業舞會，

It's pretty magical.

這個十分神奇。

We started the prom

我們在聽到一位父親的悼詞後，

after hearing a dad lament

決定開始舉辦舞會。

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

他說他再也不可能在他兒子的 燕尾服上為他釘上胸花。

The weeks before the dance,

舞會的幾周前，

the house is in a flurry,

整個中心亂成一團，

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

我也不知道誰更興奮， 員工們還是孩子們。

(Laughter)

（笑聲）

The night of the event

活動當晚，

involves rides in vintage cars,

有復古車的接送，

a walk on a red carpet

紅毯走秀，

into the great room,

來到室內舞池，

a terrific DJ

很棒的 DJ （音樂播放者），

and a photographer at the ready

以及一個待命的攝影師，

to capture pictures of these attendees

來為出席的成員

and their families.

和他的家庭攝影。

At the end of the evening this year,

今年晚會尾聲的時候，

one of our young, delightful teenaged girls,

一位討人喜歡的少女，

Caitlin, said to her mom,

凱特琳對她媽媽說：

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

「這是我一生中最棒的夜晚。」

And that's just the point,

這也是我們的宗旨，

to capture the best days and nights,

記錄下最美好的白天和夜晚，

to abolish limitations,

甩掉限制，

to have your default answer be "yes"

讓你所有的默認答案為「可以」，

and your default question be, "Why not?"

所有的默認問題為 「為什麼不可以？」

Ultimately life is too short,

究竟人生太短暫，

whether we live to be 85 years or just eight.

不管我們活到 85 歲 還是只有 8 歲，

Trust me.

相信我，

Better yet, trust Sam.

或者，相信山姆，

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

我們不是以假裝死亡不存在的方式，

that we keep the people,

保證他們，

especially the little people that we love,

尤其是我們深愛的孩子們，

safe.

安全無恙。

In the end,

最終，

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

我們都不能決定我們活多久，

What we can control

但我們能控制的是，

is how we spend our days,

我們如何度過我們的時光，

the spaces we create,

我們創造的空間，

the meaning and joy that we make.

我們給予的喜悅和意義。

We cannot change the outcome,

我們不能改變結局，

but we can change the journey.

但我們能改變旅程。

Isn't it time

難道現在不是時候，

to recognize that children deserve

來承認孩子值得

nothing less than our most uncompromising bravery

我們大人最堅定的勇氣，

and our wildest imagination.

以及我們無盡美好的想像力。

Thank you.

謝謝大家。

（掌聲）

(Applause)