[Script Info]
Title: 
[Events]
Format: Layer, Start, End, Style, Name, MarginL, MarginR, MarginV, Effect, Text
Dialogue: 0,0:00:00.84,0:00:05.46,Default,,0000,0000,0000,,I want to introduce you to some\Nvery wise kids that I've known,
Dialogue: 0,0:00:05.48,0:00:07.92,Default,,0000,0000,0000,,but first I want\Nto introduce you to a camel.
Dialogue: 0,0:00:08.72,0:00:12.98,Default,,0000,0000,0000,,This is Cassie, a therapy camel\Nvisiting one of our young patients
Dialogue: 0,0:00:13.00,0:00:14.20,Default,,0000,0000,0000,,in her room,
Dialogue: 0,0:00:14.92,0:00:16.28,Default,,0000,0000,0000,,which is pretty magical.
Dialogue: 0,0:00:17.88,0:00:22.56,Default,,0000,0000,0000,,A friend of mine raises camels\Nat his ranch in the Santa Cruz Mountains.
Dialogue: 0,0:00:23.04,0:00:24.70,Default,,0000,0000,0000,,He has about eight of them,
Dialogue: 0,0:00:24.72,0:00:26.42,Default,,0000,0000,0000,,and he started 30 years ago
Dialogue: 0,0:00:26.44,0:00:28.56,Default,,0000,0000,0000,,because he thought\Nhorses were too mundane.
Dialogue: 0,0:00:29.40,0:00:32.78,Default,,0000,0000,0000,,John is an out-of-the-box thinker,
Dialogue: 0,0:00:32.80,0:00:35.62,Default,,0000,0000,0000,,which explains why the two of us\Nhave been such good friends
Dialogue: 0,0:00:35.64,0:00:36.84,Default,,0000,0000,0000,,all of our lives.
Dialogue: 0,0:00:38.20,0:00:43.34,Default,,0000,0000,0000,,Over the years, I've convinced him\Nto shuttle those sweet furry beasts
Dialogue: 0,0:00:43.36,0:00:46.32,Default,,0000,0000,0000,,up to hang out with our sick kids\Nfrom time to time.
Dialogue: 0,0:00:47.44,0:00:49.86,Default,,0000,0000,0000,,Talking to John, I was surprised to learn
Dialogue: 0,0:00:49.88,0:00:55.08,Default,,0000,0000,0000,,that camels have an average\Nlife expectancy of 40 to 50 years.
Dialogue: 0,0:00:55.60,0:00:59.10,Default,,0000,0000,0000,,The life expectancy of many\Nof the children with whom I work
Dialogue: 0,0:00:59.12,0:01:00.44,Default,,0000,0000,0000,,is less than a year.
Dialogue: 0,0:01:01.52,0:01:04.58,Default,,0000,0000,0000,,This is a picture\Nof the George Mark Children's House,
Dialogue: 0,0:01:04.60,0:01:08.10,Default,,0000,0000,0000,,the first pediatric\Npalliative respite care center
Dialogue: 0,0:01:08.12,0:01:10.38,Default,,0000,0000,0000,,to open in the United States.
Dialogue: 0,0:01:10.40,0:01:13.38,Default,,0000,0000,0000,,I founded it in 2004,
Dialogue: 0,0:01:13.40,0:01:16.34,Default,,0000,0000,0000,,after years of working as a psychologist
Dialogue: 0,0:01:16.36,0:01:19.06,Default,,0000,0000,0000,,on pediatric intensive care units,
Dialogue: 0,0:01:19.08,0:01:24.10,Default,,0000,0000,0000,,frustrated with the undignified deaths\Nthat so many children experienced
Dialogue: 0,0:01:24.12,0:01:26.04,Default,,0000,0000,0000,,and their families had to endure.
Dialogue: 0,0:01:26.96,0:01:31.14,Default,,0000,0000,0000,,As I sat with families whose children\Nwere at the end of their lives,
Dialogue: 0,0:01:31.16,0:01:34.82,Default,,0000,0000,0000,,I was acutely aware of our surroundings.
Dialogue: 0,0:01:34.84,0:01:38.86,Default,,0000,0000,0000,,While the elevated train\Nrumbled overhead on its track,
Dialogue: 0,0:01:38.88,0:01:43.64,Default,,0000,0000,0000,,quite literally the room reverberated\Nwith each passing train car.
Dialogue: 0,0:01:44.48,0:01:47.86,Default,,0000,0000,0000,,The lights on the ward\Nwere fluorescent and too bright.
Dialogue: 0,0:01:47.88,0:01:51.10,Default,,0000,0000,0000,,Monitors beeped, as did the elevator,
Dialogue: 0,0:01:51.12,0:01:53.12,Default,,0000,0000,0000,,noisily announcing its arrival.
Dialogue: 0,0:01:53.88,0:01:55.86,Default,,0000,0000,0000,,These families were experiencing
Dialogue: 0,0:01:55.88,0:01:59.50,Default,,0000,0000,0000,,some of the most excruciating\Nmoments of their lives,
Dialogue: 0,0:01:59.52,0:02:03.10,Default,,0000,0000,0000,,and I so wanted them\Nto have a more peaceful place
Dialogue: 0,0:02:03.12,0:02:06.68,Default,,0000,0000,0000,,in which to say a last goodbye\Nto their young daughters and sons.
Dialogue: 0,0:02:07.48,0:02:09.12,Default,,0000,0000,0000,,Surely, I thought,
Dialogue: 0,0:02:09.96,0:02:13.58,Default,,0000,0000,0000,,there must be a better spot\Nthan a hospital intensive care unit
Dialogue: 0,0:02:13.60,0:02:15.80,Default,,0000,0000,0000,,for children at the end of their lives.
Dialogue: 0,0:02:16.72,0:02:18.32,Default,,0000,0000,0000,,Our children's house
Dialogue: 0,0:02:19.52,0:02:21.52,Default,,0000,0000,0000,,is calm and nurturing.
Dialogue: 0,0:02:22.04,0:02:24.66,Default,,0000,0000,0000,,It's a place where families\Ncan stay together
Dialogue: 0,0:02:24.68,0:02:27.26,Default,,0000,0000,0000,,to enjoy quality time with their children,
Dialogue: 0,0:02:27.28,0:02:30.02,Default,,0000,0000,0000,,many of whom are there for respite stays,
Dialogue: 0,0:02:30.04,0:02:33.58,Default,,0000,0000,0000,,some with repeated visits\Nover a span of many years.
Dialogue: 0,0:02:33.60,0:02:36.16,Default,,0000,0000,0000,,We call those kids our frequent flyers.
Dialogue: 0,0:02:38.36,0:02:41.78,Default,,0000,0000,0000,,Rather than the bright,\Nnoisy quarters of the hospital,
Dialogue: 0,0:02:41.80,0:02:44.62,Default,,0000,0000,0000,,their rooms are calm and comfortable,
Dialogue: 0,0:02:44.64,0:02:47.90,Default,,0000,0000,0000,,with actual living spaces\Nfor the families,
Dialogue: 0,0:02:47.92,0:02:49.70,Default,,0000,0000,0000,,a sanctuary of gardens
Dialogue: 0,0:02:49.72,0:02:52.22,Default,,0000,0000,0000,,and a wonderful outdoor playground
Dialogue: 0,0:02:52.24,0:02:55.76,Default,,0000,0000,0000,,with special structures\Nfor children with physical limitations.
Dialogue: 0,0:02:57.04,0:02:59.38,Default,,0000,0000,0000,,This sweet baby Lars
Dialogue: 0,0:02:59.40,0:03:03.36,Default,,0000,0000,0000,,came to us directly\Nfrom a hospital intensive care unit.
Dialogue: 0,0:03:04.44,0:03:07.58,Default,,0000,0000,0000,,Imagine hearing the heartbreaking news
Dialogue: 0,0:03:07.60,0:03:09.76,Default,,0000,0000,0000,,that none of us would ever want to hear.
Dialogue: 0,0:03:10.36,0:03:14.10,Default,,0000,0000,0000,,His parents had been told\Nthat Lars had a brain anomaly
Dialogue: 0,0:03:14.12,0:03:16.94,Default,,0000,0000,0000,,that would keep him from ever swallowing,
Dialogue: 0,0:03:16.96,0:03:18.86,Default,,0000,0000,0000,,walking, talking
Dialogue: 0,0:03:18.88,0:03:20.56,Default,,0000,0000,0000,,or developing mentally.
Dialogue: 0,0:03:21.48,0:03:24.46,Default,,0000,0000,0000,,Recognizing what little chance\Nhe had for survival,
Dialogue: 0,0:03:24.48,0:03:27.54,Default,,0000,0000,0000,,his parents chose\Nto focus on the quality of time
Dialogue: 0,0:03:27.56,0:03:29.04,Default,,0000,0000,0000,,that they could spend together.
Dialogue: 0,0:03:29.60,0:03:32.18,Default,,0000,0000,0000,,They moved into\None of our family apartments
Dialogue: 0,0:03:32.20,0:03:34.62,Default,,0000,0000,0000,,and treasured each day that they had,
Dialogue: 0,0:03:34.64,0:03:36.12,Default,,0000,0000,0000,,which were far too few.
Dialogue: 0,0:03:37.00,0:03:39.86,Default,,0000,0000,0000,,Lars's life was brief, to be sure,
Dialogue: 0,0:03:39.88,0:03:41.50,Default,,0000,0000,0000,,mere weeks,
Dialogue: 0,0:03:41.52,0:03:44.06,Default,,0000,0000,0000,,but it was calm and comfortable.
Dialogue: 0,0:03:44.08,0:03:46.28,Default,,0000,0000,0000,,He went on hikes with his parents.
Dialogue: 0,0:03:46.92,0:03:49.90,Default,,0000,0000,0000,,The time that he spent in the pool\Nwith our aquatic therapist
Dialogue: 0,0:03:49.92,0:03:52.10,Default,,0000,0000,0000,,lessened the seizures he was experiencing
Dialogue: 0,0:03:52.12,0:03:53.80,Default,,0000,0000,0000,,and helped him to sleep at night.
Dialogue: 0,0:03:54.32,0:03:56.38,Default,,0000,0000,0000,,His family had a peaceful place
Dialogue: 0,0:03:56.40,0:03:58.78,Default,,0000,0000,0000,,in which to both celebrate his life
Dialogue: 0,0:03:58.80,0:04:00.24,Default,,0000,0000,0000,,and mourn his death.
Dialogue: 0,0:04:01.04,0:04:04.26,Default,,0000,0000,0000,,It has been five years\Nsince Lars was with us,
Dialogue: 0,0:04:04.28,0:04:06.18,Default,,0000,0000,0000,,and in that time,
Dialogue: 0,0:04:06.20,0:04:08.54,Default,,0000,0000,0000,,his family has welcomed
Dialogue: 0,0:04:08.56,0:04:10.72,Default,,0000,0000,0000,,a daughter and another son.
Dialogue: 0,0:04:11.28,0:04:14.22,Default,,0000,0000,0000,,They are such a powerful testament
Dialogue: 0,0:04:14.24,0:04:18.40,Default,,0000,0000,0000,,to the positive outcome that specialized\Nchildren's hospice care can create.
Dialogue: 0,0:04:19.64,0:04:22.30,Default,,0000,0000,0000,,Their baby's physical discomfort\Nwas well managed,
Dialogue: 0,0:04:22.32,0:04:27.08,Default,,0000,0000,0000,,giving all of them the gift of time\Nto be together in a beautiful place.
Dialogue: 0,0:04:28.28,0:04:30.30,Default,,0000,0000,0000,,I'm going to talk to you now
Dialogue: 0,0:04:30.32,0:04:31.54,Default,,0000,0000,0000,,about the elephant
Dialogue: 0,0:04:31.56,0:04:33.32,Default,,0000,0000,0000,,rather than the camel in the room.
Dialogue: 0,0:04:35.44,0:04:38.58,Default,,0000,0000,0000,,Very few people want to talk about death,
Dialogue: 0,0:04:38.60,0:04:42.12,Default,,0000,0000,0000,,and even fewer about children's death.
Dialogue: 0,0:04:45.68,0:04:47.24,Default,,0000,0000,0000,,Loss of a child,
Dialogue: 0,0:04:48.08,0:04:50.66,Default,,0000,0000,0000,,especially for those of us\Nwho have our own children,
Dialogue: 0,0:04:50.68,0:04:51.88,Default,,0000,0000,0000,,is frightening,
Dialogue: 0,0:04:52.80,0:04:54.00,Default,,0000,0000,0000,,more than frightening,
Dialogue: 0,0:04:54.84,0:04:56.04,Default,,0000,0000,0000,,paralyzing,
Dialogue: 0,0:04:56.92,0:04:58.12,Default,,0000,0000,0000,,debilitating,
Dialogue: 0,0:04:58.92,0:05:00.12,Default,,0000,0000,0000,,impossible.
Dialogue: 0,0:05:01.32,0:05:03.58,Default,,0000,0000,0000,,But what I've learned is this:
Dialogue: 0,0:05:03.60,0:05:05.62,Default,,0000,0000,0000,,children don't stop dying
Dialogue: 0,0:05:05.64,0:05:07.62,Default,,0000,0000,0000,,just because we the adults
Dialogue: 0,0:05:07.64,0:05:10.32,Default,,0000,0000,0000,,can't comprehend\Nthe injustice of losing them.
Dialogue: 0,0:05:11.00,0:05:12.28,Default,,0000,0000,0000,,And what's more,
Dialogue: 0,0:05:13.52,0:05:15.30,Default,,0000,0000,0000,,if we can be brave enough
Dialogue: 0,0:05:15.32,0:05:17.18,Default,,0000,0000,0000,,to face the possibility of death,
Dialogue: 0,0:05:17.20,0:05:19.12,Default,,0000,0000,0000,,even among the most innocent,
Dialogue: 0,0:05:20.12,0:05:22.80,Default,,0000,0000,0000,,we gain an unparalleled kind of wisdom.
Dialogue: 0,0:05:24.24,0:05:25.84,Default,,0000,0000,0000,,Take Crystal, for example.
Dialogue: 0,0:05:27.56,0:05:29.94,Default,,0000,0000,0000,,She was one of the first children\Nto come for care
Dialogue: 0,0:05:29.96,0:05:31.36,Default,,0000,0000,0000,,after we opened our doors.
Dialogue: 0,0:05:32.28,0:05:33.94,Default,,0000,0000,0000,,She was nine when she arrived,
Dialogue: 0,0:05:33.96,0:05:38.30,Default,,0000,0000,0000,,and her neurologist expected\Nthat she might live another two weeks.
Dialogue: 0,0:05:38.32,0:05:40.82,Default,,0000,0000,0000,,She had an inoperable brain tumor,
Dialogue: 0,0:05:40.84,0:05:43.58,Default,,0000,0000,0000,,and her decline had really accelerated
Dialogue: 0,0:05:43.60,0:05:45.52,Default,,0000,0000,0000,,in the week before she came to us.
Dialogue: 0,0:05:46.24,0:05:48.22,Default,,0000,0000,0000,,After settling into her room,
Dialogue: 0,0:05:48.24,0:05:51.98,Default,,0000,0000,0000,,dressed entirely in pink and lavender,
Dialogue: 0,0:05:52.00,0:05:56.10,Default,,0000,0000,0000,,surrounded by the Hello Kitty\Naccessories that she loved,
Dialogue: 0,0:05:56.12,0:05:58.86,Default,,0000,0000,0000,,she spent the next several days
Dialogue: 0,0:05:58.88,0:06:01.44,Default,,0000,0000,0000,,winning over the hearts\Nof every staff member.
Dialogue: 0,0:06:02.76,0:06:05.94,Default,,0000,0000,0000,,Bit by bit, her condition stabilized,
Dialogue: 0,0:06:05.96,0:06:08.38,Default,,0000,0000,0000,,and then to our astonishment,
Dialogue: 0,0:06:08.40,0:06:10.04,Default,,0000,0000,0000,,she actually improved.
Dialogue: 0,0:06:11.16,0:06:12.82,Default,,0000,0000,0000,,There were a variety of factors
Dialogue: 0,0:06:12.84,0:06:16.42,Default,,0000,0000,0000,,that contributed to Crystal's improvement
Dialogue: 0,0:06:16.44,0:06:20.00,Default,,0000,0000,0000,,which we later came to call\Nthe "George Mark bump,"
Dialogue: 0,0:06:21.12,0:06:23.98,Default,,0000,0000,0000,,a lovely, not uncommon phenomenon
Dialogue: 0,0:06:24.00,0:06:26.90,Default,,0000,0000,0000,,where children outlive\Nthe prognoses of their illnesses
Dialogue: 0,0:06:26.92,0:06:28.60,Default,,0000,0000,0000,,if they're outside of the hospital.
Dialogue: 0,0:06:30.28,0:06:33.72,Default,,0000,0000,0000,,The calmer atmosphere of her surroundings,
Dialogue: 0,0:06:34.52,0:06:39.34,Default,,0000,0000,0000,,tasty meals that were fixed\Noften to accommodate her requests,
Dialogue: 0,0:06:39.36,0:06:41.04,Default,,0000,0000,0000,,the resident pets,
Dialogue: 0,0:06:41.64,0:06:45.88,Default,,0000,0000,0000,,the therapy dog and rabbit\Nspent lots of cozy time with Crystal.
Dialogue: 0,0:06:47.16,0:06:50.10,Default,,0000,0000,0000,,After she had been with us\Nfor about a week,
Dialogue: 0,0:06:50.12,0:06:52.02,Default,,0000,0000,0000,,she called her grandmother,
Dialogue: 0,0:06:52.04,0:06:53.46,Default,,0000,0000,0000,,and she said,
Dialogue: 0,0:06:53.48,0:06:57.10,Default,,0000,0000,0000,,"Gee, I'm staying in a great big house,
Dialogue: 0,0:06:57.12,0:06:59.36,Default,,0000,0000,0000,,and there's room for you to come, too.
Dialogue: 0,0:07:00.08,0:07:01.74,Default,,0000,0000,0000,,And guess what?
Dialogue: 0,0:07:01.76,0:07:03.78,Default,,0000,0000,0000,,You don't have to bring any quarters
Dialogue: 0,0:07:03.80,0:07:06.06,Default,,0000,0000,0000,,because the washer and dryer are free."
Dialogue: 0,0:07:06.08,0:07:08.26,Default,,0000,0000,0000,,(Laughter)
Dialogue: 0,0:07:08.28,0:07:11.14,Default,,0000,0000,0000,,Crystal's grandmother\Nsoon arrived from out of town,
Dialogue: 0,0:07:11.16,0:07:15.70,Default,,0000,0000,0000,,and they spent the remaining\Nfour months of Crystal's life
Dialogue: 0,0:07:15.72,0:07:18.18,Default,,0000,0000,0000,,enjoying very special days together.
Dialogue: 0,0:07:18.20,0:07:22.18,Default,,0000,0000,0000,,Some days were special because Crystal\Nwas outside in her wheelchair
Dialogue: 0,0:07:22.20,0:07:23.48,Default,,0000,0000,0000,,sitting by the fountain.
Dialogue: 0,0:07:24.04,0:07:28.42,Default,,0000,0000,0000,,For a little girl who had spent most\Nof the year earlier in a hospital bed,
Dialogue: 0,0:07:28.44,0:07:31.38,Default,,0000,0000,0000,,being outside counting hummingbirds
Dialogue: 0,0:07:31.40,0:07:33.74,Default,,0000,0000,0000,,made for an amazing time with her grandma,
Dialogue: 0,0:07:33.76,0:07:34.96,Default,,0000,0000,0000,,and lots of laughter.
Dialogue: 0,0:07:35.64,0:07:38.18,Default,,0000,0000,0000,,Other days were special\Nbecause of the activities
Dialogue: 0,0:07:38.20,0:07:41.04,Default,,0000,0000,0000,,that our child life specialist\Ncreated for her.
Dialogue: 0,0:07:41.84,0:07:46.02,Default,,0000,0000,0000,,Crystal strung beads and made jewelry\Nfor everybody in the house.
Dialogue: 0,0:07:46.04,0:07:49.20,Default,,0000,0000,0000,,She painted a pumpkin\Nto help decorate for Halloween.
Dialogue: 0,0:07:50.36,0:07:54.70,Default,,0000,0000,0000,,She spent many excited days\Nplanning her tenth birthday,
Dialogue: 0,0:07:54.72,0:07:57.44,Default,,0000,0000,0000,,which of course none of us\Nthought she would ever see.
Dialogue: 0,0:07:59.00,0:08:02.14,Default,,0000,0000,0000,,All of us wore pink boas for the occasion,
Dialogue: 0,0:08:02.16,0:08:04.70,Default,,0000,0000,0000,,and Crystal, as you can see,
Dialogue: 0,0:08:04.72,0:08:05.94,Default,,0000,0000,0000,,queen for a day,
Dialogue: 0,0:08:05.96,0:08:07.48,Default,,0000,0000,0000,,wore a sparkly tiara.
Dialogue: 0,0:08:08.64,0:08:10.38,Default,,0000,0000,0000,,One hot morning, I arrived at work
Dialogue: 0,0:08:10.40,0:08:15.90,Default,,0000,0000,0000,,and Crystal and her partner\Nin crime, Charlie, greeted me.
Dialogue: 0,0:08:15.92,0:08:19.06,Default,,0000,0000,0000,,With some help, they had set up\Na lemonade and cookie stand
Dialogue: 0,0:08:19.08,0:08:20.40,Default,,0000,0000,0000,,outside the front door,
Dialogue: 0,0:08:21.00,0:08:23.24,Default,,0000,0000,0000,,a very strategic location.
Dialogue: 0,0:08:25.32,0:08:28.70,Default,,0000,0000,0000,,I asked Crystal the price\Nof the cookie that I had selected,
Dialogue: 0,0:08:28.72,0:08:31.26,Default,,0000,0000,0000,,and she said, "Three dollars."
Dialogue: 0,0:08:31.28,0:08:35.14,Default,,0000,0000,0000,,(Laughter)
Dialogue: 0,0:08:35.16,0:08:38.26,Default,,0000,0000,0000,,I said that seemed a bit high\Nfor one cookie.
Dialogue: 0,0:08:38.28,0:08:40.02,Default,,0000,0000,0000,,(Laughter)
Dialogue: 0,0:08:40.04,0:08:41.24,Default,,0000,0000,0000,,It was small.
Dialogue: 0,0:08:43.32,0:08:46.02,Default,,0000,0000,0000,,"I know," she acknowledged with a grin,
Dialogue: 0,0:08:46.04,0:08:47.44,Default,,0000,0000,0000,,"but I'm worth it."
Dialogue: 0,0:08:49.00,0:08:50.90,Default,,0000,0000,0000,,And therein lie the words of wisdom
Dialogue: 0,0:08:50.92,0:08:55.40,Default,,0000,0000,0000,,of a young girl whose brief life\Nforever impacted mine.
Dialogue: 0,0:08:56.80,0:08:58.24,Default,,0000,0000,0000,,Crystal was worth it,
Dialogue: 0,0:08:59.08,0:09:04.38,Default,,0000,0000,0000,,and shouldn't every child whose life\Nis shortened by a horrific illness
Dialogue: 0,0:09:04.40,0:09:05.60,Default,,0000,0000,0000,,be worth it?
Dialogue: 0,0:09:06.04,0:09:08.26,Default,,0000,0000,0000,,Together, all of us today
Dialogue: 0,0:09:08.28,0:09:11.54,Default,,0000,0000,0000,,can offer that same specialized care\Nthat Crystal received
Dialogue: 0,0:09:11.56,0:09:17.22,Default,,0000,0000,0000,,by recognizing that children's\Nrespite and hospice care
Dialogue: 0,0:09:17.24,0:09:21.60,Default,,0000,0000,0000,,is a critical component missing\Nfrom our healthcare landscape.
Dialogue: 0,0:09:23.56,0:09:24.94,Default,,0000,0000,0000,,It's also interesting to note
Dialogue: 0,0:09:24.96,0:09:26.78,Default,,0000,0000,0000,,that we are able to provide this care
Dialogue: 0,0:09:26.80,0:09:30.48,Default,,0000,0000,0000,,at about one third of the cost\Nof a hospital intensive care unit,
Dialogue: 0,0:09:31.32,0:09:34.16,Default,,0000,0000,0000,,and our families don't see a bill.
Dialogue: 0,0:09:34.88,0:09:37.66,Default,,0000,0000,0000,,We are ever grateful to the supporters
Dialogue: 0,0:09:37.68,0:09:40.12,Default,,0000,0000,0000,,who believe in this important work\Nthat we're doing.
Dialogue: 0,0:09:42.00,0:09:45.46,Default,,0000,0000,0000,,The truth is that my colleagues and I
Dialogue: 0,0:09:45.48,0:09:49.06,Default,,0000,0000,0000,,and the parents and other family members
Dialogue: 0,0:09:49.08,0:09:52.06,Default,,0000,0000,0000,,who get to experience this special wisdom
Dialogue: 0,0:09:52.08,0:09:53.84,Default,,0000,0000,0000,,are in a unique position.
Dialogue: 0,0:09:54.88,0:10:00.10,Default,,0000,0000,0000,,There are only two freestanding\Npediatric hospices in the United States,
Dialogue: 0,0:10:00.12,0:10:02.82,Default,,0000,0000,0000,,although I'm happy to report\Nthat based on our model,
Dialogue: 0,0:10:02.84,0:10:06.90,Default,,0000,0000,0000,,there are 18 others\Nunder various stages of development.
Dialogue: 0,0:10:06.92,0:10:10.08,Default,,0000,0000,0000,,(Applause)
Dialogue: 0,0:10:11.44,0:10:16.46,Default,,0000,0000,0000,,Still, most of the children\Nwho die in the United States every year
Dialogue: 0,0:10:16.48,0:10:18.50,Default,,0000,0000,0000,,die in hospital rooms,
Dialogue: 0,0:10:18.52,0:10:20.94,Default,,0000,0000,0000,,surrounded by beeping machines
Dialogue: 0,0:10:20.96,0:10:23.06,Default,,0000,0000,0000,,and anxious, exhausted adults
Dialogue: 0,0:10:23.08,0:10:25.06,Default,,0000,0000,0000,,who have no other option
Dialogue: 0,0:10:25.08,0:10:28.90,Default,,0000,0000,0000,,but to say goodbye\Nunder those harsh, institutional lights
Dialogue: 0,0:10:28.92,0:10:30.96,Default,,0000,0000,0000,,and among virtual strangers.
Dialogue: 0,0:10:31.80,0:10:33.94,Default,,0000,0000,0000,,For comparison's sake,
Dialogue: 0,0:10:33.96,0:10:35.30,Default,,0000,0000,0000,,the United Kingdom,
Dialogue: 0,0:10:35.32,0:10:39.46,Default,,0000,0000,0000,,which is a country with about one fifth\Nthe population of the United States,
Dialogue: 0,0:10:39.48,0:10:43.10,Default,,0000,0000,0000,,and about half the size\Nof the state of California,
Dialogue: 0,0:10:43.12,0:10:47.52,Default,,0000,0000,0000,,has 54 hospice and respite centers.
Dialogue: 0,0:10:49.84,0:10:51.70,Default,,0000,0000,0000,,Why is that?
Dialogue: 0,0:10:51.72,0:10:56.50,Default,,0000,0000,0000,,I've asked myself that question\Nobviously many times.
Dialogue: 0,0:10:56.52,0:11:02.02,Default,,0000,0000,0000,,My best guess is that Americans,\Nwith our positive can-do attitude
Dialogue: 0,0:11:02.04,0:11:06.62,Default,,0000,0000,0000,,hold the expectation\Nthat our medical care system will fix it,
Dialogue: 0,0:11:06.64,0:11:11.12,Default,,0000,0000,0000,,even though it may be a childhood illness\Nfor which there is no cure.
Dialogue: 0,0:11:11.76,0:11:15.86,Default,,0000,0000,0000,,We go to extraordinary measures\Nto keep children alive
Dialogue: 0,0:11:15.88,0:11:19.26,Default,,0000,0000,0000,,when in fact the greatest kindness\Nthat we might give them
Dialogue: 0,0:11:19.28,0:11:22.02,Default,,0000,0000,0000,,would be a peaceful, pain-free
Dialogue: 0,0:11:22.04,0:11:23.24,Default,,0000,0000,0000,,end of life.
Dialogue: 0,0:11:24.40,0:11:27.22,Default,,0000,0000,0000,,The transition from cure to care
Dialogue: 0,0:11:27.24,0:11:30.46,Default,,0000,0000,0000,,remains a challenging one\Nfor many hospital physicians
Dialogue: 0,0:11:30.48,0:11:33.98,Default,,0000,0000,0000,,whose training has really been\Nabout saving lives,
Dialogue: 0,0:11:34.00,0:11:37.60,Default,,0000,0000,0000,,not about gently guiding the patient\Nto the end of life.
Dialogue: 0,0:11:38.64,0:11:42.18,Default,,0000,0000,0000,,The dad of a sweet baby\Nfor whom we cared at the end of her life
Dialogue: 0,0:11:42.20,0:11:44.74,Default,,0000,0000,0000,,certainly captured this dichotomy
Dialogue: 0,0:11:44.76,0:11:46.34,Default,,0000,0000,0000,,when he reflected
Dialogue: 0,0:11:46.36,0:11:50.34,Default,,0000,0000,0000,,that there are a lot of people\Nto help you bring an infant into the world
Dialogue: 0,0:11:50.36,0:11:53.76,Default,,0000,0000,0000,,but very few to help you usher a baby out.
Dialogue: 0,0:11:55.12,0:11:58.20,Default,,0000,0000,0000,,So what is the magic ingredient\Nat George Mark?
Dialogue: 0,0:11:59.16,0:12:03.26,Default,,0000,0000,0000,,The complex medical diagnoses\Nthat bring our young patients to us
Dialogue: 0,0:12:03.28,0:12:06.26,Default,,0000,0000,0000,,mean that their lives\Nhave often been restricted,
Dialogue: 0,0:12:06.28,0:12:09.02,Default,,0000,0000,0000,,some to a hospital bed\Nfor long periods of time,
Dialogue: 0,0:12:09.04,0:12:10.90,Default,,0000,0000,0000,,others to wheelchairs,
Dialogue: 0,0:12:10.92,0:12:16.16,Default,,0000,0000,0000,,still others to intensive courses\Nof chemotherapy or rehab.
Dialogue: 0,0:12:17.12,0:12:20.82,Default,,0000,0000,0000,,We make a practice\Nof ignoring those limitations.
Dialogue: 0,0:12:20.84,0:12:23.06,Default,,0000,0000,0000,,Our default answer is "yes"
Dialogue: 0,0:12:23.08,0:12:25.84,Default,,0000,0000,0000,,and our default question is, "Why not?"
Dialogue: 0,0:12:26.48,0:12:28.30,Default,,0000,0000,0000,,That's why we took a young boy
Dialogue: 0,0:12:28.32,0:12:31.30,Default,,0000,0000,0000,,who wasn't going to live\Nfor another baseball season
Dialogue: 0,0:12:31.32,0:12:33.88,Default,,0000,0000,0000,,to Game 5 of the World Series.
Dialogue: 0,0:12:34.76,0:12:38.18,Default,,0000,0000,0000,,That's why we have a talent show\Nput on by the staff and kids
Dialogue: 0,0:12:38.20,0:12:39.82,Default,,0000,0000,0000,,for family and friends.
Dialogue: 0,0:12:39.84,0:12:44.90,Default,,0000,0000,0000,,Who wouldn't be enchanted by a young boy\Nplaying a piano piece with his feet,
Dialogue: 0,0:12:44.92,0:12:46.44,Default,,0000,0000,0000,,because his arms are atrophied?
Dialogue: 0,0:12:47.80,0:12:50.04,Default,,0000,0000,0000,,That's why we have a prom every year.
Dialogue: 0,0:12:51.80,0:12:53.20,Default,,0000,0000,0000,,It's pretty magical.
Dialogue: 0,0:12:53.80,0:12:55.66,Default,,0000,0000,0000,,We started the prom
Dialogue: 0,0:12:55.68,0:12:57.30,Default,,0000,0000,0000,,after hearing a dad lament
Dialogue: 0,0:12:57.32,0:13:01.80,Default,,0000,0000,0000,,that he would never pin\Na boutonniere on his son's tuxedo lapel.
Dialogue: 0,0:13:03.48,0:13:05.62,Default,,0000,0000,0000,,The weeks before the dance,
Dialogue: 0,0:13:05.64,0:13:06.90,Default,,0000,0000,0000,,the house is in a flurry,
Dialogue: 0,0:13:06.92,0:13:09.70,Default,,0000,0000,0000,,and I don't know who's more excited,\Nthe staff or the kids.
Dialogue: 0,0:13:09.72,0:13:10.86,Default,,0000,0000,0000,,(Laughter)
Dialogue: 0,0:13:10.88,0:13:12.50,Default,,0000,0000,0000,,The night of the event
Dialogue: 0,0:13:12.52,0:13:16.98,Default,,0000,0000,0000,,involves rides in vintage cars,
Dialogue: 0,0:13:17.00,0:13:18.98,Default,,0000,0000,0000,,a walk on a red carpet
Dialogue: 0,0:13:19.00,0:13:21.50,Default,,0000,0000,0000,,into the great room,
Dialogue: 0,0:13:21.52,0:13:23.32,Default,,0000,0000,0000,,a terrific DJ
Dialogue: 0,0:13:24.16,0:13:25.94,Default,,0000,0000,0000,,and a photographer at the ready
Dialogue: 0,0:13:25.96,0:13:28.50,Default,,0000,0000,0000,,to capture pictures of these attendees
Dialogue: 0,0:13:28.52,0:13:29.88,Default,,0000,0000,0000,,and their families.
Dialogue: 0,0:13:30.64,0:13:32.94,Default,,0000,0000,0000,,At the end of the evening this year,
Dialogue: 0,0:13:32.96,0:13:36.64,Default,,0000,0000,0000,,one of our young,\Ndelightful teenaged girls,
Dialogue: 0,0:13:37.68,0:13:40.00,Default,,0000,0000,0000,,Caitlin, said to her mom,
Dialogue: 0,0:13:41.64,0:13:44.46,Default,,0000,0000,0000,,"That was the best night\Nof my whole life."
Dialogue: 0,0:13:44.48,0:13:46.86,Default,,0000,0000,0000,,And that's just the point,
Dialogue: 0,0:13:46.88,0:13:50.62,Default,,0000,0000,0000,,to capture the best days and nights,
Dialogue: 0,0:13:50.64,0:13:52.72,Default,,0000,0000,0000,,to abolish limitations,
Dialogue: 0,0:13:53.52,0:13:55.66,Default,,0000,0000,0000,,to have your default answer be "yes"
Dialogue: 0,0:13:55.68,0:13:58.72,Default,,0000,0000,0000,,and your default question be, "Why not?"
Dialogue: 0,0:13:59.80,0:14:02.30,Default,,0000,0000,0000,,Ultimately life is too short,
Dialogue: 0,0:14:02.32,0:14:05.78,Default,,0000,0000,0000,,whether we live\Nto be 85 years or just eight.
Dialogue: 0,0:14:05.80,0:14:07.06,Default,,0000,0000,0000,,Trust me.
Dialogue: 0,0:14:07.08,0:14:08.92,Default,,0000,0000,0000,,Better yet, trust Sam.
Dialogue: 0,0:14:10.76,0:14:14.86,Default,,0000,0000,0000,,It's not by pretending\Nthat death doesn't exist
Dialogue: 0,0:14:14.88,0:14:16.70,Default,,0000,0000,0000,,that we keep the people,
Dialogue: 0,0:14:16.72,0:14:19.14,Default,,0000,0000,0000,,especially the little people that we love,
Dialogue: 0,0:14:19.16,0:14:20.36,Default,,0000,0000,0000,,safe.
Dialogue: 0,0:14:21.08,0:14:22.62,Default,,0000,0000,0000,,In the end,
Dialogue: 0,0:14:22.64,0:14:25.86,Default,,0000,0000,0000,,we can't control how long any of us lives.
Dialogue: 0,0:14:25.88,0:14:27.62,Default,,0000,0000,0000,,What we can control
Dialogue: 0,0:14:27.64,0:14:30.26,Default,,0000,0000,0000,,is how we spend our days,
Dialogue: 0,0:14:30.28,0:14:32.00,Default,,0000,0000,0000,,the spaces we create,
Dialogue: 0,0:14:33.12,0:14:36.36,Default,,0000,0000,0000,,the meaning and joy that we make.
Dialogue: 0,0:14:36.92,0:14:39.94,Default,,0000,0000,0000,,We cannot change the outcome,
Dialogue: 0,0:14:39.96,0:14:41.88,Default,,0000,0000,0000,,but we can change the journey.
Dialogue: 0,0:14:43.68,0:14:45.12,Default,,0000,0000,0000,,Isn't it time
Dialogue: 0,0:14:47.00,0:14:49.26,Default,,0000,0000,0000,,to recognize that children deserve
Dialogue: 0,0:14:49.28,0:14:53.66,Default,,0000,0000,0000,,nothing less than our\Nmost uncompromising bravery
Dialogue: 0,0:14:53.68,0:14:56.04,Default,,0000,0000,0000,,and our wildest imagination.
Dialogue: 0,0:14:57.04,0:14:58.26,Default,,0000,0000,0000,,Thank you.
Dialogue: 0,0:14:58.28,0:15:01.84,Default,,0000,0000,0000,,(Applause)