ABOUT THE SPEAKER
Kathy Hull - Pediatric psychologist
Kathy 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.

More profile about the speaker
Kathy Hull | Speaker | TED.com
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

Filmed:
1,028,397 views

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。
- Pediatric psychologist
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,
00:12
I want to introduce介紹 you to some
very wise明智的 kids孩子 that I've known已知,
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00:17
but first I want
to introduce介紹 you to a camel駱駝.
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但是首先請允許我
向你們介紹一隻駱駝。
00:20
This is Cassie卡西, a therapy治療 camel駱駝
visiting訪問 one of our young年輕 patients耐心
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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,
就在她的房間裡,
00:25
in her room房間,
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00:26
which哪一個 is pretty漂亮 magical神奇.
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這是不是很神奇。
00:29
A friend朋友 of mine raises加薪 camels駱駝
at his ranch牧場 in the Santa聖誕老人 Cruz克魯茲 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。
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開始 30 years年份 ago
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因為他覺得馬過於平常。
00:38
because he thought
horses馬匹 were too mundane平凡.
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00:41
John約翰 is an out-of-the-box盒子外面 thinker思想家,
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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,
00:44
which哪一個 explains說明 why the two of us
have been such這樣 good friends朋友
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從始至終。
00:47
all of our lives生活.
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00:50
Over the years年份, I've convinced相信 him
to shuttle穿梭 those sweet furry毛茸茸 beasts獸類
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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,
時而與我們那些
病著的孩子互動遊戲。
00:55
up to hang out with our sick生病 kids孩子
from time to time.
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00:59
Talking to John約翰, I was surprised詫異 to learn學習
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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駱駝 have an average平均
life expectancy期待 of 40 to 50 years年份.
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01:07
The life expectancy期待 of many許多
of the children孩子 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
只有不到一年。
01:11
is less than a year.
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01:13
This is a picture圖片
of the George喬治 Mark標記 Children's兒童 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小兒科的
palliative治標不治本 respite喘息 care關心 center中央
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在美國成立的
兒童安寧及喘息照護中心。
01:20
to open打開 in the United聯合的 States狀態.
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01:22
I founded成立 it in 2004,
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我在 2004 年成立了這個中心。
01:25
after years年份 of working加工 as a psychologist心理學家
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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小兒科的 intensive集約 care關心 units單位,
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我挫敗地見證那麼多孩子
毫無尊嚴的死亡,
01:31
frustrated受挫 with the undignified不體面 deaths死亡
that so many許多 children孩子 experienced有經驗的
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01:36
and their families家庭 had to endure忍受.
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以及他們的家庭承受著的痛苦。
01:38
As I satSAT with families家庭 whose誰的 children孩子
were at the end結束 of their lives生活,
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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,
我敏銳地意識到我們周圍的
那些嘈雜聲音:
01:43
I was acutely急性 aware知道的 of our surroundings環境.
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01:46
While the elevated提高的 train培養
rumbled轟隆隆 overhead高架 on its track跟踪,
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高架火車在鐵軌上發出的轟隆聲;
01:50
quite相當 literally按照字面 the room房間 reverberated迴盪
with each passing通過 train培養 car汽車.
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每次火車經過時病房內都會有回音。
01:56
The lights燈火 on the ward病房
were fluorescent and too bright.
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病房裡的螢光燈過於耀眼。
01:59
Monitors顯示器 beeped插進, as did the elevator電梯,
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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吵鬧 announcing宣布 its arrival到達.
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02:05
These families家庭 were experiencing經歷
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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痛苦
moments瞬間 of their lives生活,
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我無比希望他們
能在一個比較寧靜的地方,
02:11
and I so wanted them
to have a more peaceful平靜的 place地點
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和他們還年幼的兒女做最後的告別。
02:15
in which哪一個 to say a last goodbye再見
to their young年輕 daughters女兒 and sons兒子.
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02:19
Surely一定, I thought,
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我想,
02:21
there must必須 be a better spot
than a hospital醫院 intensive集約 care關心 unit單元
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一定會有一個比醫院的加護中心
更好的地方,
02:25
for children孩子 at the end結束 of their lives生活.
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讓孩子們走完最後的人生。
02:28
Our children's兒童 house
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我們的兒童中心,
02:31
is calm冷靜 and nurturing培育.
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是平靜且十分關愛的。
02:34
It's a place地點 where families家庭
can stay together一起
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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請享用 quality質量 time with their children孩子,
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許多病患來這裡做短暫的休養,
02:39
many許多 of whom are there for respite喘息 stays入住,
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有些在數年中多次往返。
02:42
some with repeated重複 visits訪問
over a span跨度 of many許多 years年份.
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02:45
We call those kids孩子 our frequent頻繁 fliers傳單.
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我們笑稱那些孩子為
我們的飛行常客。
02:50
Rather than the bright,
noisy嘈雜 quarters住處 of the hospital醫院,
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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客房 are calm冷靜 and comfortable自在,
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還有家庭活動空間,
02:56
with actual實際 living活的 spaces空間
for the families家庭,
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一個庇護心靈的花園,
02:59
a sanctuary避難所 of gardens花園
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以及一個很棒的戶外遊樂區,
03:01
and a wonderful精彩 outdoor戶外 playground操場
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附有為身體受限孩子
準備的特殊設備。
03:04
with special特別 structures結構
for children孩子 with physical物理 limitations限制.
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03:09
This sweet baby寶寶 Lars拉爾斯
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這個可愛的男孩拉爾斯,
03:11
came來了 to us directly
from a hospital醫院 intensive集約 care關心 unit單元.
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從醫院加護中心直接來到我們這裡。
03:16
Imagine想像 hearing聽力 the heartbreaking令人心碎 news新聞
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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沒有 of us would ever want to hear.
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03:22
His parents父母 had been told
that Lars拉爾斯 had a brain anomaly不規則
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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吞嚥,
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走路、講話
03:28
walking步行, talking
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或智力發展。
03:30
or developing發展 mentally精神上.
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03:33
Recognizing認識 what little chance機會
he had for survival生存,
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在接受拉爾斯的存活機率
是多麼渺小之後,
他的父母決定善用拉爾斯
03:36
his parents父母 chose選擇
to focus焦點 on the quality質量 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一起.
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03:41
They moved移動 into
one of our family家庭 apartments公寓
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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哪一個 were far too few少數.
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03:49
Lars's拉斯的 life was brief簡要, 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冷靜 and comfortable自在.
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他和他的父母一起去遠足。
03:56
He went on hikes加息 with his parents父母.
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03:58
The time that he spent花費 in the pool
with our aquatic therapist治療師
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與我們水療治療師在水池裡的時間,
04:01
lessened減少 the seizures癲癇發作 he was experiencing經歷
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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幫助 him to sleep睡覺 at night.
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04:06
His family家庭 had a peaceful平靜的 place地點
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他們一家有一個寧靜的地方,
04:08
in which哪一個 to both celebrate慶祝 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死亡.
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04:13
It has been five years年份
since以來 Lars拉爾斯 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家庭 has welcomed歡迎
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04:20
a daughter女兒 and another另一個 son兒子.
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一個女兒和另一個兒子。
04:23
They are such這樣 a powerful強大 testament遺囑
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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。
04:26
to the positive outcome結果 that specialized專門
children's兒童 hospice臨終關懷 care關心 can create創建.
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04:31
Their baby's寶寶 physical物理 discomfort不舒服
was well managed管理,
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我們很細心照料他們孩子
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。
04:34
giving all of them the gift禮品 of time
to be together一起 in a beautiful美麗 place地點.
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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)
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駱駝 in the room房間.
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04:47
Very few少數 people want to talk about death死亡,
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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兒童 death死亡.
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04:57
Loss失利 of a child兒童,
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失去一個孩子,
05:00
especially特別 for those of us
who have our own擁有 children孩子,
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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可怕的,
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05:04
more than frightening可怕的,
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更勝於可怕的是,
05:06
paralyzing癱瘓,
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令人癱瘓,
05:08
debilitating衰弱,
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使人虛弱,
05:10
impossible不可能.
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不敢想像。
05:13
But what I've learned學到了 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孩子 don't stop dying垂死
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僅僅因為我們成年人,
05:17
just because we the adults成年人
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05:19
can't comprehend理解
the injustice不公正 of losing失去 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勇敢 enough足夠
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如果我們勇敢
面對死亡的可能性,
05:27
to face面對 the possibility可能性 of death死亡,
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甚至那些最無辜的孩子們的死亡,
05:29
even among其中 the most innocent無辜,
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05:32
we gain獲得 an unparalleled空前的 kind of wisdom智慧.
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我們將會從中獲得無窮的智慧。
05:36
Take Crystal水晶, for example.
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以水晶為例,
05:39
She was one of the first children孩子
to come for care關心
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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打開 our doors.
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05:44
She was nine when she arrived到達,
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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。
05:45
and her neurologist神經學家 expected預期
that she might威力 live生活 another另一個 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不能手術 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下降 had really accelerated加速
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她身體的衰退已經加劇。
05:55
in the week before she came來了 to us.
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05:58
After settling解決 into her room房間,
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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連衣裙的 entirely完全 in pink and lavender薰衣草,
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被她深愛的凱蒂貓所包圍著。
06:04
surrounded包圍 by the Hello你好 Kitty貓咪
accessories飾品 that she loved喜愛,
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她在接下來的幾天中,
06:08
she spent花費 the next下一個 several一些 days
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贏得了我們每一個工作人員的心。
06:10
winning勝利 over the hearts心中
of every一切 staff員工 member會員.
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06:14
Bit by bit, her condition條件 stabilized穩定,
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逐漸地,她的情況穩定下來。
06:17
and then to our astonishment驚愕,
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而且令我們吃驚的是,
她竟然有改善。
06:20
she actually其實 improved改善.
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06:23
There were a variety品種 of factors因素
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有很多因素
有助於水晶的改善,
06:24
that contributed貢獻 to Crystal's水晶的 improvement起色
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我們後來稱之為
「喬治·馬克的碰撞火花」,
06:28
which哪一個 we later後來 came來了 to call
the "George喬治 Mark標記 bump磕碰,"
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06:33
a lovely可愛, not uncommon罕見 phenomenon現象
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這是一個讓人欣喜,
但並非罕見的現象。
如果住在醫院之外的地方,
06:36
where children孩子 outlive活得比
the prognoses預後 of their illnesses疾病
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孩子們比預計活得要更久。
06:38
if they're outside of the hospital醫院.
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06:42
The calmer平靜 atmosphere大氣層 of her surroundings環境,
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她周圍環境的寧靜,
06:46
tasty可口 meals that were fixed固定
often經常 to accommodate容納 her requests要求,
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經常滿足她喜好的可口飯菜,
06:51
the resident居民 pets寵物,
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中心裡的常駐寵物,
06:53
the therapy治療 dog and rabbit兔子
spent花費 lots of cozy舒適 time with Crystal水晶.
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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。
06:59
After she had been with us
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祖母,
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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,
07:05
"Gee嘖嘖, 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房間 for you to come, too.
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07:12
And guess猜測 what?
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你知道嗎?
07:13
You don't have to bring帶來 any quarters住處
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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。」
07:15
because the washer墊圈 and dryer烘乾機 are free自由."
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07:18
(Laughter笑聲)
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(笑聲)
07:20
Crystal's水晶的 grandmother祖母
soon不久 arrived到達 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,
她陪伴著水晶走過了餘下的四個月,
07:23
and they spent花費 the remaining其餘
four months個月 of Crystal's水晶的 life
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07:27
enjoying享受 very special特別 days together一起.
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一起享受著特別的每一天。
07:30
Some days were special特別 because Crystal水晶
was outside in her wheelchair輪椅
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有些天很特別,
因為水晶坐著輪椅來到外面,
坐在噴泉旁。
07:34
sitting坐在 by the fountain噴泉.
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07:36
For a little girl女孩 who had spent花費 most
of the year earlier in a hospital醫院 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,
坐在外面數著蜂鳥,
07:40
being存在 outside counting數數 hummingbirds蜂鳥
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與祖母歡聚在一起,
07:43
made製作 for an amazing驚人 time with her grandma奶奶,
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並且開懷的大笑,這是多麼寶貴。
07:45
and lots of laughter笑聲.
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07:47
Other days were special特別
because of the activities活動
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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。
07:50
that our child兒童 life specialist專家
created創建 for her.
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07:53
Crystal水晶 strung串起 beads and made製作 jewelry首飾
for everybody每個人 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。
她在南瓜上作畫並幫助我們
做萬聖節裝飾。
07:58
She painted a pumpkin南瓜
to help decorate裝飾 for Halloween萬聖節.
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08:02
She spent花費 many許多 excited興奮 days
planning規劃 her tenth第十 birthday生日,
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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,
雖然我們都不認為她會活到那時。
08:06
which哪一個 of course課程 none沒有 of us
thought she would ever see.
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08:11
All of us wore穿著 pink boas for the occasion場合,
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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水晶, as you can see,
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08:16
queen女王 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穿著 a sparkly閃閃發光的 tiara頭飾.
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08:20
One hot morning早上, I arrived到達 at work
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某一個炎熱的早晨,我到了中心後,
08:22
and Crystal水晶 and her partner夥伴
in crime犯罪, Charlie查理, greeted歡迎 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檸檬汽水 and cookie曲奇餅 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,
就在大門外,
08:31
outside the front面前 door,
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08:33
a very strategic戰略 location位置.
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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水晶 the price價錢
of the cookie曲奇餅 that I had selected,
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08:40
and she said, "Three dollars美元."
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她說: 「三元美金。」
08:43
(Laughter笑聲)
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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似乎 a bit high
for one cookie曲奇餅.
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08:50
(Laughter笑聲)
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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承認 with a grin微笑,
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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價值 it."
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09:01
And therein在其中 lie謊言 the words of wisdom智慧
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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。
09:02
of a young年輕 girl女孩 whose誰的 brief簡要 life
forever永遠 impacted影響 mine.
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09:08
Crystal水晶 was worth價值 it,
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水晶的確值得。
09:11
and shouldn't不能 every一切 child兒童 whose誰的 life
is shortened縮短 by a horrific可怕的 illness疾病
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難道所有被可怕疾病
縮短生命的孩子,
他們的一生不值得這些嗎?
09:16
be worth價值 it?
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09:18
Together一起, all of us today今天
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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,
09:20
can offer提供 that same相同 specialized專門 care關心
that Crystal水晶 received收到
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只要我們承認
到兒童臨終舒緩看護治療,
09:23
by recognizing認識 that children's兒童
respite喘息 and hospice臨終關懷 care關心
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是我們的醫療體系中嚴重
缺失的一個項目。
09:29
is a critical危急 component零件 missing失踪
from our healthcare衛生保健 landscape景觀.
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09:35
It's also interesting有趣 to note注意
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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能夠 to provide提供 this care關心
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只相當於在醫院
加護中心的三分之一。
09:38
at about one third第三 of the cost成本
of a hospital醫院 intensive集約 care關心 unit單元,
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09:43
and our families家庭 don't see a bill法案.
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而且我們的家庭收不到任何帳單,
09:46
We are ever grateful感激 to the supporters支持者
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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重要 work
that we're doing.
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09:54
The truth真相 is that my colleagues同事 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父母 and other family家庭 members會員
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和我一樣了解這個項目的重要性,
10:01
who get to experience經驗 this special特別 wisdom智慧
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但是我們為數極少。
10:04
are in a unique獨特 position位置.
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10:06
There are only two freestanding獨立式的
pediatric小兒科的 hospices收容所 in the United聯合的 States狀態,
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目前在美國只有兩個獨立的
兒童臨終照護中心。
我欣慰的要報告是,
採用我們的模式,
10:12
although雖然 I'm happy快樂 to report報告
that based基於 on our model模型,
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目前有 18 個中心正在
不同階段的建設中。
10:14
there are 18 others其他
under various各個 stages階段 of development發展.
194
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(掌聲)
10:18
(Applause掌聲)
195
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10:23
Still, most of the children孩子
who die in the United聯合的 States狀態 every一切 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醫院 rooms客房,
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2016
被嗶嗶聲的機器
10:30
surrounded包圍 by beeping蜂鳴 machines
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10:32
and anxious, exhausted adults成年人
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和焦急、精疲力盡的家長包圍著。
10:35
who have no other option選項
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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,
10:37
but to say goodbye再見
under those harsh苛刻, institutional制度 lights燈火
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與自己的寶貝說再見。
10:40
and among其中 virtual虛擬 strangers陌生人.
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10:43
For comparison's比較的 sake清酒,
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相比來講,
10:45
the United聯合的 Kingdom王國,
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英國
僅有著五分之一的美國人口,
10:47
which哪一個 is a country國家 with about one fifth第五
the population人口 of the United聯合的 States狀態,
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國家也只有半個加州大小,
10:51
and about half the size尺寸
of the state of California加州,
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10:55
has 54 hospice臨終關懷 and respite喘息 centers中心.
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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明顯 many許多 times.
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我的猜測是我們積極樂觀美國人,
11:08
My best最好 guess猜測 is that Americans美國人,
with our positive can-do可以做 attitude態度
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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,
11:14
hold保持 the expectation期望
that our medical care關心 system系統 will fix固定 it,
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即便它是一個無法治愈的幼兒疾病,
11:18
even though雖然 it may可能 be a childhood童年 illness疾病
for which哪一個 there is no cure治愈.
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11:23
We go to extraordinary非凡 measures措施
to keep children孩子 alive
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我們採取幾乎任何措施來
延長孩子的生命,
但是事實上我們能給他們
最好的禮物,
11:27
when in fact事實 the greatest最大 kindness善良
that we might威力 give them
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11:31
would be a peaceful平靜的, pain-free無痛
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莫過於平靜、沒有痛苦的
11:34
end結束 of life.
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1200
生命末期。
11:36
The transition過渡 from cure治愈 to care關心
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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。
11:39
remains遺跡 a challenging具有挑戰性的 one
for many許多 hospital醫院 physicians醫師
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醫生認為他們的職責是救人,
11:42
whose誰的 training訓練 has really been
about saving保存 lives生活,
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11:46
not about gently平緩 guiding主導 the patient患者
to the end結束 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。
11:50
The dad of a sweet baby寶寶
for whom we cared照顧 at the end結束 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當然 captured捕獲 this dichotomy二分法
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11:56
when he reflected反射的
223
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他反映說,
11:58
that there are a lot of people
to help you bring帶來 an infant嬰兒 into the world世界
224
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有很多人幫助你將你的寶貝
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少數 to help you usher招待員 a baby寶寶 out.
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12:07
So what is the magic魔法 ingredient成分
at George喬治 Mark標記?
226
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所以在喬治·馬克有什麼
神奇的成分呢?
12:11
The complex複雜 medical diagnoses診斷
that bring帶來 our young年輕 patients耐心 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,
意味著他們的生命會被侷限,
12:15
mean that their lives生活
have often經常 been restricted限制,
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有一些在醫院病床上躺
很長一段時間,
12:18
some to a hospital醫院 bed
for long periods of time,
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12:21
others其他 to wheelchairs輪椅,
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另外一些在輪椅上,
12:22
still others其他 to intensive集約 courses培訓班
of chemotherapy化療 or rehab康復.
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還有一些需要密集化療和復健。
12:29
We make a practice實踐
of ignoring無視 those limitations限制.
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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默認 answer回答 is "yes"
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我們的默認問題是
「為什麼不可以?」
12:35
and our default默認 question is, "Why not?"
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12:38
That's why we took a young年輕 boy男孩
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這就是為什麼我們
看護的一個年幼的男孩,
12:40
who wasn't going to live生活
for another另一個 baseball棒球 season季節
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他的生命被預期不會活過
下一個棒球賽季,
活到世界杯的第五場
(註:大約 10 月底)。
12:43
to Game遊戲 5 of the World世界 Series系列.
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12:46
That's why we have a talent天賦 show顯示
put on by the staff員工 and kids孩子
238
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這也是為什麼孩子們和員工
舉辦了才藝秀,
12:50
for family家庭 and friends朋友.
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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,
12:51
Who wouldn't不會 be enchanted入迷 by a young年輕 boy男孩
playing播放 a piano鋼琴 piece with his feet,
240
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只因為他的手臂萎縮了?
12:56
because his arms武器 are atrophied萎縮?
241
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12:59
That's why we have a prom舞會 every一切 year.
242
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這就是為什麼我們每年
都有畢業舞會,
13:03
It's pretty漂亮 magical神奇.
243
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這個十分神奇。
13:05
We started開始 the prom舞會
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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聽力 a dad lament哀嘆
245
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13:09
that he would never pin
a boutonniere胸花 on his son's兒子 tuxedo晚禮服 lapel翻領.
246
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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。
13:15
The weeks before the dance舞蹈,
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舞會的幾周前,
13:17
the house is in a flurry慌張,
248
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整個中心亂成一團,
13:18
and I don't know who's誰是 more excited興奮,
the staff員工 or the kids孩子.
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我也不知道誰更興奮,
員工們還是孩子們。
(笑聲)
13:21
(Laughter笑聲)
250
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活動當晚,
13:22
The night of the event事件
251
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13:24
involves涉及 rides遊樂設施 in vintage釀酒 cars汽車,
252
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有復古車的接送,
13:29
a walk步行 on a red carpet地毯
253
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1976
紅毯走秀,
來到室內舞池,
13:31
into the great room房間,
254
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很棒的 DJ (音樂播放者),
13:33
a terrific了不起 DJDJ
255
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13:36
and a photographer攝影師 at the ready準備
256
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以及一個待命的攝影師,
13:37
to capture捕獲 pictures圖片 of these attendees與會者
257
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來為出席的成員
和他的家庭攝影。
13:40
and their families家庭.
258
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13:42
At the end結束 of the evening晚間 this year,
259
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今年晚會尾聲的時候,
13:44
one of our young年輕,
delightful愉快 teenaged十幾歲的 girls女孩,
260
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一位討人喜歡的少女,
13:49
Caitlin凱特琳, said to her mom媽媽,
261
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凱特琳對她媽媽說:
13:53
"That was the best最好 night
of my whole整個 life."
262
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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捕獲 the best最好 days and nights,
264
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14:02
to abolish廢除 limitations限制,
265
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甩掉限制,
14:05
to have your default默認 answer回答 be "yes"
266
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讓你所有的默認答案為「可以」,
14:07
and your default默認 question be, "Why not?"
267
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所有的默認問題為
「為什麼不可以?」
14:11
Ultimately最終, 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,
14:14
whether是否 we live生活
to be 85 years年份 or just eight.
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14:17
Trust相信 me.
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相信我,
14:19
Better yet然而, trust相信 Sam山姆.
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或者,相信山姆,
14:22
It's not by pretending假裝
that death死亡 doesn't exist存在
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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特別 the little people that we love,
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安全無恙。
14:31
safe安全.
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14:33
In the end結束,
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最終,
14:34
we can't control控制 how long any of us lives生活.
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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控制
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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空間 we create創建,
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我們創造的空間,
14:45
the meaning含義 and joy喜悅 that we make.
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我們給予的喜悅和意義。
14:48
We cannot不能 change更改 the outcome結果,
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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更改 the journey旅程.
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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認識 that children孩子 deserve值得
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來承認孩子值得
15:01
nothing less than our
most uncompromising堅定的 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最瘋狂 imagination想像力.
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15:09
Thank you.
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謝謝大家。
(掌聲)
15:10
(Applause掌聲)
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Translated by ting fang lin
Reviewed by Yanyan Hong

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ABOUT THE SPEAKER
Kathy Hull - Pediatric psychologist
Kathy 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.

More profile about the speaker
Kathy Hull | Speaker | TED.com

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