TEDWomen 2016
Kathy Hull: Stories from a home for terminally ill children
凱西·霍爾: 來自臨終兒童看護中心的故事
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為了紀念那些年幼就離世的生命，凱西·霍爾成立了美國第一個獨立的兒童舒緩看護治療中心──喬治馬克兒童中心。這個中心的宗旨是：為那些身患絕症的孩子以及他們的家庭提供一個安靜的地方來告別。 她分享了那些滿溢歡樂、智慧、想像以及令人心碎的故事。
Kathy Hull - Pediatric psychologist
Kathy Nicholson Hull founded the first freestanding pediatric palliative care center in the US. Full bio
Kathy Nicholson Hull founded the first freestanding pediatric palliative care center in the US. Full bio
Double-click the English transcript below to play the video.
我想向你們介紹一些我認識
當中非常聰明的孩子，
當中非常聰明的孩子，
00:12
I want to introduce you to some
very wise kids that I've known,
very wise kids that I've known,
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00:17
but first I want
to introduce you to a camel.
to introduce you to a camel.
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但是首先請允許我
向你們介紹一隻駱駝。
向你們介紹一隻駱駝。
00:20
This is Cassie, a therapy camel
visiting one of our young patients
visiting one of our young patients
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這是凱茲，它是其中一隻拜訪
我們年幼病人的治療駱駝，
我們年幼病人的治療駱駝，
就在她的房間裡，
00:25
in her room,
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00:26
which is pretty magical.
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這是不是很神奇。
00:29
A friend of mine raises camels
at his ranch in the Santa Cruz Mountains.
at his ranch in the Santa Cruz Mountains.
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在聖塔克魯茲山脈，我的一個朋友
在他的牧場裡飼養駱駝。
在他的牧場裡飼養駱駝。
00:35
He has about eight of them,
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他養了八隻。
他從三十年前開始飼養，
00:36
and he started 30 years ago
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因為他覺得馬過於平常。
00:38
because he thought
horses were too mundane.
horses were too mundane.
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00:41
John is an out-of-the-box thinker,
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約翰有不同於常人的思維方式，
這也解釋了為什麼我們是
關係如此好的朋友，
關係如此好的朋友，
00:44
which explains why the two of us
have been such good friends
have been such good friends
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從始至終。
00:47
all of our lives.
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00:50
Over the years, I've convinced him
to shuttle those sweet furry beasts
to shuttle those sweet furry beasts
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這麼多年來，我已說服他
將他那些可愛的駱駝們帶出牧場，
將他那些可愛的駱駝們帶出牧場，
時而與我們那些
病著的孩子互動遊戲。
病著的孩子互動遊戲。
00:55
up to hang out with our sick kids
from time to time.
from time to time.
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00:59
Talking to John, I was surprised to learn
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和約翰聊天時，我驚訝的了解到
駱駝的平均壽命長達 40 至 50 年；
01:01
that camels have an average
life expectancy of 40 to 50 years.
life expectancy of 40 to 50 years.
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01:07
The life expectancy of many
of the children with whom I work
of the children with whom I work
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而我照看的那麼多孩子當中，
他們的壽命很多都
他們的壽命很多都
只有不到一年。
01:11
is less than a year.
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01:13
This is a picture
of the George Mark Children's House,
of the George Mark Children's House,
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這是喬治·馬克兒童中心，
這是第一個
01:16
the first pediatric
palliative respite care center
palliative respite care center
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在美國成立的
兒童安寧及喘息照護中心。
兒童安寧及喘息照護中心。
01:20
to open in the United States.
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01:22
I founded it in 2004,
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我在 2004 年成立了這個中心。
01:25
after years of working as a psychologist
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數年以來，作為一位專職於
小兒科加護病房的心理專家，
01:28
on pediatric intensive care units,
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我挫敗地見證那麼多孩子
毫無尊嚴的死亡，
毫無尊嚴的死亡，
01:31
frustrated with the undignified deaths
that so many children experienced
that so many children experienced
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01:36
and their families had to endure.
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以及他們的家庭承受著的痛苦。
01:38
As I sat with families whose children
were at the end of their lives,
were at the end of their lives,
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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，
陪伴他們的孩子度過最後的時光，
我敏銳地意識到我們周圍的
那些嘈雜聲音：
那些嘈雜聲音：
01:43
I was acutely aware of our surroundings.
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01:46
While the elevated train
rumbled overhead on its track,
rumbled overhead on its track,
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高架火車在鐵軌上發出的轟隆聲；
01:50
quite literally the room reverberated
with each passing train car.
with each passing train car.
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每次火車經過時病房內都會有回音。
01:56
The lights on the ward
were fluorescent and too bright.
were fluorescent and too bright.
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病房裡的螢光燈過於耀眼。
01:59
Monitors beeped, as did the elevator,
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監視器嗶嗶響，
電梯提示到達樓層的聲音也是很吵。
02:03
noisily announcing its arrival.
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02:05
These families were experiencing
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這些家庭正經歷著
他們一生中最痛苦的時刻。
02:07
some of the most excruciating
moments of their lives,
moments of their lives,
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我無比希望他們
能在一個比較寧靜的地方，
能在一個比較寧靜的地方，
02:11
and I so wanted them
to have a more peaceful place
to have a more peaceful place
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和他們還年幼的兒女做最後的告別。
02:15
in which to say a last goodbye
to their young daughters and sons.
to their young daughters and sons.
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02:19
Surely, I thought,
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我想，
02:21
there must be a better spot
than a hospital intensive care unit
than a hospital intensive care unit
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一定會有一個比醫院的加護中心
更好的地方，
更好的地方，
02:25
for children at the end of their lives.
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讓孩子們走完最後的人生。
02:28
Our children's house
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我們的兒童中心，
02:31
is calm and nurturing.
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是平靜且十分關愛的。
02:34
It's a place where families
can stay together
can stay together
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這是一個能讓家人相聚在一起，
與孩子享受歡樂時光。
02:36
to enjoy quality time with their children,
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許多病患來這裡做短暫的休養，
02:39
many of whom are there for respite stays,
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有些在數年中多次往返。
02:42
some with repeated visits
over a span of many years.
over a span of many years.
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02:45
We call those kids our frequent fliers.
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我們笑稱那些孩子為
我們的飛行常客。
我們的飛行常客。
02:50
Rather than the bright,
noisy quarters of the hospital,
noisy quarters of the hospital,
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比起醫院裡的刺眼和嘈雜，
這裡的房間安靜又舒適，
02:53
their rooms are calm and comfortable,
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還有家庭活動空間，
02:56
with actual living spaces
for the families,
for the families,
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一個庇護心靈的花園，
02:59
a sanctuary of gardens
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以及一個很棒的戶外遊樂區，
03:01
and a wonderful outdoor playground
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附有為身體受限孩子
準備的特殊設備。
準備的特殊設備。
03:04
with special structures
for children with physical limitations.
for children with physical limitations.
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03:09
This sweet baby Lars
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這個可愛的男孩拉爾斯，
03:11
came to us directly
from a hospital intensive care unit.
from a hospital intensive care unit.
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從醫院加護中心直接來到我們這裡。
03:16
Imagine hearing the heartbreaking news
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想像一下被告知
我們永遠都不想聽到的心碎消息。
03:19
that none of us would ever want to hear.
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03:22
His parents had been told
that Lars had a brain anomaly
that Lars had a brain anomaly
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他的父母被告知拉爾斯有腦部異常，
將會導致他永遠不能吞嚥、
03:26
that would keep him from ever swallowing,
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走路、講話
03:28
walking, talking
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或智力發展。
03:30
or developing mentally.
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03:33
Recognizing what little chance
he had for survival,
he had for survival,
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在接受拉爾斯的存活機率
是多麼渺小之後，
是多麼渺小之後，
他的父母決定善用拉爾斯
03:36
his parents chose
to focus on the quality of time
to focus on the quality of time
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與他們能一起度過的剩餘時光。
03:39
that they could spend together.
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03:41
They moved into
one of our family apartments
one of our family apartments
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他們搬進我們家庭套房，
03:44
and treasured each day that they had,
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並且珍惜每一天，
但是時間實在太少了。
03:46
which were far too few.
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03:49
Lars's life was brief, to be sure,
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拉爾斯的生命很短暫，準確來說，
不過幾周，
03:51
mere weeks,
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但是卻十分平靜和舒適。
03:53
but it was calm and comfortable.
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他和他的父母一起去遠足。
03:56
He went on hikes with his parents.
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03:58
The time that he spent in the pool
with our aquatic therapist
with our aquatic therapist
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與我們水療治療師在水池裡的時間，
04:01
lessened the seizures he was experiencing
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減輕了拉爾斯的癲癇，
並且幫助他晚上能夠入睡。
04:04
and helped him to sleep at night.
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04:06
His family had a peaceful place
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他們一家有一個寧靜的地方，
04:08
in which to both celebrate his life
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來慶祝他活著的每一天，
和哀悼他的離去。
04:10
and mourn his death.
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04:13
It has been five years
since Lars was with us,
since Lars was with us,
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拉爾斯已經離開我們五年了，
那五年裡，
04:16
and in that time,
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他的家庭又迎來了
04:18
his family has welcomed
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04:20
a daughter and another son.
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一個女兒和另一個兒子。
04:23
They are such a powerful testament
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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。
多大的正面效果。
04:26
to the positive outcome that specialized
children's hospice care can create.
children's hospice care can create.
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04:31
Their baby's physical discomfort
was well managed,
was well managed,
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我們很細心照料他們孩子
身體上的不舒服，
身體上的不舒服，
並讓他們在美好的環境裡，
享受禮物般的相處時間。
享受禮物般的相處時間。
04:34
giving all of them the gift of time
to be together in a beautiful place.
to be together in a beautiful place.
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04:40
I'm going to talk to you now
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我現在要講的是
房間裡的大象，
（不願談的困境）
（不願談的困境）
04:42
about the elephant
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而不是在房間裡的駱駝。
04:43
rather than the camel in the room.
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04:47
Very few people want to talk about death,
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很少人願意談及死亡，
更少的人願意談及孩子的死亡。
04:50
and even fewer about children's death.
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04:57
Loss of a child,
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失去一個孩子，
05:00
especially for those of us
who have our own children,
who have our own children,
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特別是對我們有孩子的人來講，
是如此可怕。
05:02
is frightening,
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05:04
more than frightening,
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更勝於可怕的是，
05:06
paralyzing,
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令人癱瘓，
05:08
debilitating,
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使人虛弱，
05:10
impossible.
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不敢想像。
05:13
But what I've learned is this:
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但是我清楚的認識到
孩子的死亡並不會
05:15
children don't stop dying
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僅僅因為我們成年人，
05:17
just because we the adults
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05:19
can't comprehend
the injustice of losing them.
the injustice of losing them.
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不願理解失去他們的不公平而停止。
05:23
And what's more,
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除此以外，
05:25
if we can be brave enough
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如果我們勇敢
面對死亡的可能性，
05:27
to face the possibility of death,
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甚至那些最無辜的孩子們的死亡，
05:29
even among the most innocent,
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05:32
we gain an unparalleled kind of wisdom.
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我們將會從中獲得無窮的智慧。
05:36
Take Crystal, for example.
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以水晶為例，
05:39
She was one of the first children
to come for care
to come for care
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她是中心成立時，
最早到來的孩子之一。
05:41
after we opened our doors.
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05:44
She was nine when she arrived,
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她來時才九歲，
她的腦神經科醫生預測她大約
還有兩周的生命。
還有兩周的生命。
05:45
and her neurologist expected
that she might live another two weeks.
that she might live another two weeks.
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她有一個無法手術的腦部腫瘤，
05:50
She had an inoperable brain tumor,
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而且在來我們這裡前的一個禮拜裡，
05:52
and her decline had really accelerated
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她身體的衰退已經加劇。
05:55
in the week before she came to us.
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05:58
After settling into her room,
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她住進房間以後，
她全身換上了粉色和淡紫色的衣服，
06:00
dressed entirely in pink and lavender,
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被她深愛的凱蒂貓所包圍著。
06:04
surrounded by the Hello Kitty
accessories that she loved,
accessories that she loved,
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她在接下來的幾天中，
06:08
she spent the next several days
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贏得了我們每一個工作人員的心。
06:10
winning over the hearts
of every staff member.
of every staff member.
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06:14
Bit by bit, her condition stabilized,
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逐漸地，她的情況穩定下來。
06:17
and then to our astonishment,
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而且令我們吃驚的是，
她竟然有改善。
06:20
she actually improved.
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06:23
There were a variety of factors
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有很多因素
有助於水晶的改善，
06:24
that contributed to Crystal's improvement
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我們後來稱之為
「喬治·馬克的碰撞火花」，
「喬治·馬克的碰撞火花」，
06:28
which we later came to call
the "George Mark bump,"
the "George Mark bump,"
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06:33
a lovely, not uncommon phenomenon
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這是一個讓人欣喜，
但並非罕見的現象。
但並非罕見的現象。
如果住在醫院之外的地方，
06:36
where children outlive
the prognoses of their illnesses
the prognoses of their illnesses
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孩子們比預計活得要更久。
06:38
if they're outside of the hospital.
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06:42
The calmer atmosphere of her surroundings,
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她周圍環境的寧靜，
06:46
tasty meals that were fixed
often to accommodate her requests,
often to accommodate her requests,
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經常滿足她喜好的可口飯菜，
06:51
the resident pets,
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中心裡的常駐寵物，
06:53
the therapy dog and rabbit
spent lots of cozy time with Crystal.
spent lots of cozy time with Crystal.
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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。
許多舒適時光都提供了療效。
06:59
After she had been with us
for about a week,
for about a week,
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她在我們這裡一星期後，
她打給她的祖母，
07:02
she called her grandmother,
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她說：
07:04
and she said,
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「哎， 我現在住在一個
很棒的房子裡，
很棒的房子裡，
07:05
"Gee, I'm staying in a great big house,
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而且這裡也有你可以住的地方，
07:09
and there's room for you to come, too.
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07:12
And guess what?
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你知道嗎？
07:13
You don't have to bring any quarters
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你不需要帶任何硬幣，
因為這裡的洗衣機和烘乾機
都是免費的。」
都是免費的。」
07:15
because the washer and dryer are free."
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07:18
(Laughter)
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（笑聲）
07:20
Crystal's grandmother
soon arrived from out of town,
soon arrived from out of town,
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水晶的祖母很快從外縣市
來到了我們這裡，
來到了我們這裡，
她陪伴著水晶走過了餘下的四個月，
07:23
and they spent the remaining
four months of Crystal's life
four months of Crystal's life
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07:27
enjoying very special days together.
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一起享受著特別的每一天。
07:30
Some days were special because Crystal
was outside in her wheelchair
was outside in her wheelchair
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有些天很特別，
因為水晶坐著輪椅來到外面，
因為水晶坐著輪椅來到外面，
坐在噴泉旁。
07:34
sitting by the fountain.
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07:36
For a little girl who had spent most
of the year earlier in a hospital bed,
of the year earlier in a hospital bed,
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對於一個以前一直
躺在醫院病床的小女孩來說，
躺在醫院病床的小女孩來說，
坐在外面數著蜂鳥，
07:40
being outside counting hummingbirds
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與祖母歡聚在一起，
07:43
made for an amazing time with her grandma,
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並且開懷的大笑，這是多麼寶貴。
07:45
and lots of laughter.
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07:47
Other days were special
because of the activities
because of the activities
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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。
所準備的活動。
07:50
that our child life specialist
created for her.
created for her.
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07:53
Crystal strung beads and made jewelry
for everybody in the house.
for everybody in the house.
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水晶將珠子串起來做給
我們每個人的首飾。
我們每個人的首飾。
她在南瓜上作畫並幫助我們
做萬聖節裝飾。
做萬聖節裝飾。
07:58
She painted a pumpkin
to help decorate for Halloween.
to help decorate for Halloween.
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08:02
She spent many excited days
planning her tenth birthday,
planning her tenth birthday,
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她花了很多天很興奮的計劃著
她的十歲生日派對，
她的十歲生日派對，
雖然我們都不認為她會活到那時。
08:06
which of course none of us
thought she would ever see.
thought she would ever see.
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08:11
All of us wore pink boas for the occasion,
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我們所有人都戴上粉色的花圈，
至於水晶，你們可以看到，
08:14
and Crystal, as you can see,
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08:16
queen for a day,
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是我們那天的皇后，
戴著一頂閃耀的皇冠。
08:17
wore a sparkly tiara.
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08:20
One hot morning, I arrived at work
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某一個炎熱的早晨，我到了中心後，
08:22
and Crystal and her partner
in crime, Charlie, greeted me.
in crime, Charlie, greeted me.
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水晶和她的同夥查理向我打招呼。
08:27
With some help, they had set up
a lemonade and cookie stand
a lemonade and cookie stand
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在一些幫助下，他們搭起了
一個賣檸檬汁和餅乾的小攤位，
一個賣檸檬汁和餅乾的小攤位，
就在大門外，
08:31
outside the front door,
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08:33
a very strategic location.
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一個很明智的地方。
我問水晶我選的餅乾的價格，
08:37
I asked Crystal the price
of the cookie that I had selected,
of the cookie that I had selected,
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08:40
and she said, "Three dollars."
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她說： 「三元美金。」
08:43
(Laughter)
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（笑聲）
我說這對一塊餅乾來講太貴了。
08:47
I said that seemed a bit high
for one cookie.
for one cookie.
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08:50
(Laughter)
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（笑聲）
08:52
It was small.
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那塊餅乾很小，
08:55
"I know," she acknowledged with a grin,
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「我知道。」她嬉笑的回答。
「但是我值得這三元美金。」
08:58
"but I'm worth it."
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09:01
And therein lie the words of wisdom
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她說的話對我有很大啟發。
這一個年幼女孩短暫的一生
永遠影響著我。
永遠影響著我。
09:02
of a young girl whose brief life
forever impacted mine.
forever impacted mine.
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09:08
Crystal was worth it,
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水晶的確值得。
09:11
and shouldn't every child whose life
is shortened by a horrific illness
is shortened by a horrific illness
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難道所有被可怕疾病
縮短生命的孩子，
縮短生命的孩子，
他們的一生不值得這些嗎？
09:16
be worth it?
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09:18
Together, all of us today
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今天，我們在座的所有人
可以提供和水晶接受到的
一樣的特殊看護，
一樣的特殊看護，
09:20
can offer that same specialized care
that Crystal received
that Crystal received
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只要我們承認
到兒童臨終舒緩看護治療，
到兒童臨終舒緩看護治療，
09:23
by recognizing that children's
respite and hospice care
respite and hospice care
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是我們的醫療體系中嚴重
缺失的一個項目。
缺失的一個項目。
09:29
is a critical component missing
from our healthcare landscape.
from our healthcare landscape.
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09:35
It's also interesting to note
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更加值得注意的是，
我們提供看護治療的費用，
09:36
that we are able to provide this care
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只相當於在醫院
加護中心的三分之一。
加護中心的三分之一。
09:38
at about one third of the cost
of a hospital intensive care unit,
of a hospital intensive care unit,
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09:43
and our families don't see a bill.
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而且我們的家庭收不到任何帳單，
09:46
We are ever grateful to the supporters
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我們無比感激我們的支持者，
他們相信我們工作的重要意義。
09:49
who believe in this important work
that we're doing.
that we're doing.
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09:54
The truth is that my colleagues and I
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實際上，我和我的同事，
孩子的家長以及他們其他家庭成員，
09:57
and the parents and other family members
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和我一樣了解這個項目的重要性，
10:01
who get to experience this special wisdom
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但是我們為數極少。
10:04
are in a unique position.
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10:06
There are only two freestanding
pediatric hospices in the United States,
pediatric hospices in the United States,
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目前在美國只有兩個獨立的
兒童臨終照護中心。
兒童臨終照護中心。
我欣慰的要報告是，
採用我們的模式，
採用我們的模式，
10:12
although I'm happy to report
that based on our model,
that based on our model,
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目前有 18 個中心正在
不同階段的建設中。
不同階段的建設中。
10:14
there are 18 others
under various stages of development.
under various stages of development.
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（掌聲）
10:18
(Applause)
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10:23
Still, most of the children
who die in the United States every year
who die in the United States every year
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但是，目前美國每年死亡的兒童，
大多數在醫院裡結束了生命，
10:28
die in hospital rooms,
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被嗶嗶聲的機器
10:30
surrounded by beeping machines
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10:32
and anxious, exhausted adults
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和焦急、精疲力盡的家長包圍著。
10:35
who have no other option
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他們沒有選擇，
只能在刺目的醫院燈光
和陌生人的注視下，
和陌生人的注視下，
10:37
but to say goodbye
under those harsh, institutional lights
under those harsh, institutional lights
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與自己的寶貝說再見。
10:40
and among virtual strangers.
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10:43
For comparison's sake,
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相比來講，
10:45
the United Kingdom,
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英國
僅有著五分之一的美國人口，
10:47
which is a country with about one fifth
the population of the United States,
the population of the United States,
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國家也只有半個加州大小，
10:51
and about half the size
of the state of California,
of the state of California,
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10:55
has 54 hospice and respite centers.
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卻有 54 所臨終看護和喘息休養中心。
11:01
Why is that?
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為什麼呢？
我常常問自己，
11:03
I've asked myself that question
obviously many times.
obviously many times.
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我的猜測是我們積極樂觀美國人，
11:08
My best guess is that Americans,
with our positive can-do attitude
with our positive can-do attitude
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對目前醫療體系有著
它會逐漸完善這個缺失的期許，
它會逐漸完善這個缺失的期許，
11:14
hold the expectation
that our medical care system will fix it,
that our medical care system will fix it,
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即便它是一個無法治愈的幼兒疾病，
11:18
even though it may be a childhood illness
for which there is no cure.
for which there is no cure.
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11:23
We go to extraordinary measures
to keep children alive
to keep children alive
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我們採取幾乎任何措施來
延長孩子的生命，
延長孩子的生命，
但是事實上我們能給他們
最好的禮物，
最好的禮物，
11:27
when in fact the greatest kindness
that we might give them
that we might give them
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11:31
would be a peaceful, pain-free
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莫過於平靜、沒有痛苦的
11:34
end of life.
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生命末期。
11:36
The transition from cure to care
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從治愈轉變為照護的過程，
對許多醫院的醫生來說
還是一種挑戰。
還是一種挑戰。
11:39
remains a challenging one
for many hospital physicians
for many hospital physicians
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醫生認為他們的職責是救人，
11:42
whose training has really been
about saving lives,
about saving lives,
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11:46
not about gently guiding the patient
to the end of life.
to the end of life.
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並不是溫和的引導
他們的病人走向生命結束。
他們的病人走向生命結束。
11:50
The dad of a sweet baby
for whom we cared at the end of her life
for whom we cared at the end of her life
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一個我們看護的可愛寶寶的父親
確實領會了這個矛盾。
11:54
certainly captured this dichotomy
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11:56
when he reflected
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他反映說，
11:58
that there are a lot of people
to help you bring an infant into the world
to help you bring an infant into the world
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有很多人幫助你將你的寶貝
帶到這個世界來，
帶到這個世界來，
卻很少有人願意幫助你帶他們離去。
12:02
but very few to help you usher a baby out.
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12:07
So what is the magic ingredient
at George Mark?
at George Mark?
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所以在喬治·馬克有什麼
神奇的成分呢？
神奇的成分呢？
12:11
The complex medical diagnoses
that bring our young patients to us
that bring our young patients to us
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伴隨著病人來到我們中心的
那些複雜的診斷，
那些複雜的診斷，
意味著他們的生命會被侷限，
12:15
mean that their lives
have often been restricted,
have often been restricted,
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有一些在醫院病床上躺
很長一段時間，
很長一段時間，
12:18
some to a hospital bed
for long periods of time,
for long periods of time,
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12:21
others to wheelchairs,
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另外一些在輪椅上，
12:22
still others to intensive courses
of chemotherapy or rehab.
of chemotherapy or rehab.
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還有一些需要密集化療和復健。
12:29
We make a practice
of ignoring those limitations.
of ignoring those limitations.
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我們基本上忽略這些限制。
我們的默認答案是「可以」，
12:32
Our default answer is "yes"
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我們的默認問題是
「為什麼不可以？」
「為什麼不可以？」
12:35
and our default question is, "Why not?"
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12:38
That's why we took a young boy
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這就是為什麼我們
看護的一個年幼的男孩，
看護的一個年幼的男孩，
12:40
who wasn't going to live
for another baseball season
for another baseball season
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他的生命被預期不會活過
下一個棒球賽季，
下一個棒球賽季，
活到世界杯的第五場
（註：大約 10 月底）。
（註：大約 10 月底）。
12:43
to Game 5 of the World Series.
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12:46
That's why we have a talent show
put on by the staff and kids
put on by the staff and kids
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這也是為什麼孩子們和員工
舉辦了才藝秀，
舉辦了才藝秀，
12:50
for family and friends.
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讓他們的家庭和朋友來觀看。
誰不會被一個用腳
彈奏鋼琴的小男孩而動容，
彈奏鋼琴的小男孩而動容，
12:51
Who wouldn't be enchanted by a young boy
playing a piano piece with his feet,
playing a piano piece with his feet,
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只因為他的手臂萎縮了？
12:56
because his arms are atrophied?
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12:59
That's why we have a prom every year.
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這就是為什麼我們每年
都有畢業舞會，
都有畢業舞會，
13:03
It's pretty magical.
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這個十分神奇。
13:05
We started the prom
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我們在聽到一位父親的悼詞後，
決定開始舉辦舞會。
13:07
after hearing a dad lament
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13:09
that he would never pin
a boutonniere on his son's tuxedo lapel.
a boutonniere on his son's tuxedo lapel.
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他說他再也不可能在他兒子的
燕尾服上為他釘上胸花。
燕尾服上為他釘上胸花。
13:15
The weeks before the dance,
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舞會的幾周前，
13:17
the house is in a flurry,
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整個中心亂成一團，
13:18
and I don't know who's more excited,
the staff or the kids.
the staff or the kids.
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我也不知道誰更興奮，
員工們還是孩子們。
員工們還是孩子們。
（笑聲）
13:21
(Laughter)
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活動當晚，
13:22
The night of the event
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13:24
involves rides in vintage cars,
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有復古車的接送，
13:29
a walk on a red carpet
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紅毯走秀，
來到室內舞池，
13:31
into the great room,
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很棒的 DJ （音樂播放者），
13:33
a terrific DJ
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13:36
and a photographer at the ready
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以及一個待命的攝影師，
13:37
to capture pictures of these attendees
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來為出席的成員
和他的家庭攝影。
13:40
and their families.
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13:42
At the end of the evening this year,
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今年晚會尾聲的時候，
13:44
one of our young,
delightful teenaged girls,
delightful teenaged girls,
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一位討人喜歡的少女，
13:49
Caitlin, said to her mom,
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凱特琳對她媽媽說：
13:53
"That was the best night
of my whole life."
of my whole life."
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「這是我一生中最棒的夜晚。」
這也是我們的宗旨，
13:56
And that's just the point,
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記錄下最美好的白天和夜晚，
13:58
to capture the best days and nights,
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14:02
to abolish limitations,
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甩掉限制，
14:05
to have your default answer be "yes"
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讓你所有的默認答案為「可以」，
14:07
and your default question be, "Why not?"
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所有的默認問題為
「為什麼不可以？」
「為什麼不可以？」
14:11
Ultimately life is too short,
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究竟人生太短暫，
不管我們活到 85 歲
還是只有 8 歲，
還是只有 8 歲，
14:14
whether we live
to be 85 years or just eight.
to be 85 years or just eight.
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14:17
Trust me.
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相信我，
14:19
Better yet, trust Sam.
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或者，相信山姆，
14:22
It's not by pretending
that death doesn't exist
that death doesn't exist
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我們不是以假裝死亡不存在的方式，
14:26
that we keep the people,
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保證他們，
尤其是我們深愛的孩子們，
14:28
especially the little people that we love,
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安全無恙。
14:31
safe.
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14:33
In the end,
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最終，
14:34
we can't control how long any of us lives.
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我們都不能決定我們活多久，
但我們能控制的是，
14:37
What we can control
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我們如何度過我們的時光，
14:39
is how we spend our days,
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14:42
the spaces we create,
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我們創造的空間，
14:45
the meaning and joy that we make.
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我們給予的喜悅和意義。
14:48
We cannot change the outcome,
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我們不能改變結局，
但我們能改變旅程。
14:51
but we can change the journey.
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14:55
Isn't it time
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難道現在不是時候，
14:59
to recognize that children deserve
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來承認孩子值得
15:01
nothing less than our
most uncompromising bravery
most uncompromising bravery
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我們大人最堅定的勇氣，
以及我們無盡美好的想像力。
15:05
and our wildest imagination.
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15:09
Thank you.
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謝謝大家。
（掌聲）
15:10
(Applause)
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ABOUT THE SPEAKER
Kathy Hull - Pediatric psychologistKathy Nicholson Hull founded the first freestanding pediatric palliative care center in the US.
Why you should listen
With her pioneering spirit and tenacious nature, Dr. Kathy Hull recognized an unmet need in the provision of services to children with incurable medical conditions. Working in a traditional medical environment at a prominent children's hospital, with its emphasis on curative treatment, Hull realized the necessity for a more supportive medical model, and setting, for children at the end of their lives. Her research of pediatric care modalities convinced her that a well-established prototype of pediatric palliative care existed throughout Europe and could be replicated here.
Acting as an architect for creative change, Hull navigated the labyrinth of permits and approvals, as well as managed the design and building of the George Mark Children's House (GMCH). The House opened in 2004 in San Leandro, California, where it's set on five beautifully landscaped acres. Since opening its doors, more than twelve hundred children and their families have been lovingly cared for by the staff of GMCH. Additionally, George Mark has served as the role model for sixteen other entities currently under development throughout the United States. Presently, Dr. Hull is the staff Psychologist and President of the Board of GMCH, as well as being an adjunct staff member at UCSF Benioff Children’s Hospital Oakland.
Among the honors Hull has received for her philanthropy and humanitarianism are Maria Shriver’s Minerva Award; Traditional Home Magazine Classic Woman Award Purpose Prize Fellow and Jefferson Award. She is also a Regent Emeritus of Santa Clara University. Hull and her husband Bill reside in the San Francisco Bay Area and are proud parents of eight offspring and have eight delightful grandchildren.
Kathy Hull | Speaker | TED.com