WEBVTT

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

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but first I want
to introduce you to a camel.

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

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in her room,

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which is pretty magical.

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

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He has about eight of them,

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and he started 30 years ago

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because he thought
horses were too mundane.

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

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

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all of our lives.

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

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

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Talking to John, I was surprised to learn

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

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

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is less than a year.

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

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the first pediatric
palliative respite care center

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to open in the United States.

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I founded it in 2004,

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after years of working as a psychologist

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on pediatric intensive care units,

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frustrated with the undignified deaths
that so many children experienced

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and their families had to endure.

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

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I was acutely aware of our surroundings.

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While the elevated train
rumbled overhead on its track,

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quite literally the room reverberated
with each passing train car.

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The lights on the ward
were fluorescent and too bright.

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Monitors beeped, as did the elevator,

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noisily announcing its arrival.

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These families were experiencing

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some of the most excruciating
moments of their lives,

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and I so wanted them
to have a more peaceful place

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

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Surely, I thought,

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

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for children at the end of their lives.

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Our children's house

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is calm and nurturing.

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It's a place where families
can stay together

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to enjoy quality time with their children,

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many of whom are there for respite stays,

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some with repeated visits
over a span of many years.

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We call those kids our frequent flyers.

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Rather than the bright,
noisy quarters of the hospital,

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their rooms are calm and comfortable,

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with actual living spaces
for the families,

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a sanctuary of gardens

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and a wonderful outdoor playground

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with special structures
for children with physical limitations.

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This sweet baby Lars

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came to us directly
from a hospital intensive care unit.

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Imagine hearing the heartbreaking news

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that none of us would ever want to hear.

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His parents had been told
that Lars had a brain anomaly

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that would keep him from ever swallowing,

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walking, talking

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or developing mentally.

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Recognizing what little chance
he had for survival,

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his parents chose
to focus on the quality of time

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that they could spend together.

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They moved into
one of our family apartments

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and treasured each day that they had,

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which were far too few.

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Lars's life was brief, to be sure,

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mere weeks,

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but it was calm and comfortable.

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He went on hikes with his parents.

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

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lessened the seizures he was experiencing

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and helped him to sleep at night.

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His family had a peaceful place

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in which to both celebrate his life

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and mourn his death.

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It has been five years
since Lars was with us,

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and in that time,

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his family has welcomed

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a daughter and another son.

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They are such a powerful testament

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

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Their baby's physical discomfort
was well managed,

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

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I'm going to talk to you now

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about the elephant

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rather than the camel in the room.

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Very few people want to talk about death,

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and even fewer about children's death.

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Loss of a child,

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especially for those of us
who have our own children,

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is frightening,

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more than frightening,

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paralyzing,

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debilitating,

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impossible.

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But what I've learned is this:

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children don't stop dying

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just because we the adults

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can't comprehend
the injustice of losing them.

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And what's more,

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if we can be brave enough

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to face the possibility of death,

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even among the most innocent,

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we gain an unparalleled kind of wisdom.

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Take Crystal, for example.

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She was one of the first children
to come for care

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after we opened our doors.

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She was nine when she arrived,

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

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She had an inoperable brain tumor,

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and her decline had really accelerated

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in the week before she came to us.

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After settling into her room,

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dressed entirely in pink and lavender,

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surrounded by the Hello Kitty
accessories that she loved,

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she spent the next several days

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winning over the hearts
of every staff member.

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Bit by bit, her condition stabilized,

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and then to our astonishment,

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she actually improved.

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There were a variety of factors

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that contributed to Crystal's improvement

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

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a lovely, not uncommon phenomenon

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where children outlive
the prognoses of their illnesses

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if they're outside of the hospital.

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The calmer atmosphere of her surroundings,

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tasty meals that were fixed
often to accommodate her requests,

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the resident pets,

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

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After she had been with us
for about a week,

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she called her grandmother,

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and she said,

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

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

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And guess what?

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You don't have to bring any quarters

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because the washer and dryer are free."

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(Laughter)

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Crystal's grandmother
soon arrived from out of town,

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

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enjoying very special days together.

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Some days were special because Crystal
was outside in her wheelchair

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sitting by the fountain.

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

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being outside counting hummingbirds

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made for an amazing time with her grandma,

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and lots of laughter.

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Other days were special
because of the activities

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that our child life specialist
created for her.

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

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She painted a pumpkin
to help decorate for Halloween.

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She spent many excited days
planning her tenth birthday,

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

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All of us wore pink boas for the occasion,

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and Crystal, as you can see,

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queen for a day,

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wore a sparkly tiara.

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One hot morning, I arrived at work

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

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

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outside the front door,

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a very strategic location.

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

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and she said, "Three dollars."

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(Laughter)

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I said that seemed a bit high
for one cookie.

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(Laughter)

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It was small.

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"I know," she acknowledged with a grin,

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"but I'm worth it."

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And therein lie the words of wisdom

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of a young girl whose brief life
forever impacted mine.

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Crystal was worth it,

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

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be worth it?

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Together, all of us today

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can offer that same specialized care
that Crystal received

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by recognizing that children's
respite and hospice care

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is a critical component missing
from our healthcare landscape.

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It's also interesting to note

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that we are able to provide this care

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

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and our families don't see a bill.

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We are ever grateful to the supporters

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

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The truth is that my colleagues and I

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and the parents and other family members

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who get to experience this special wisdom

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are in a unique position.

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

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

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there are 18 others
under various stages of development.

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(Applause)

NOTE Paragraph

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

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die in hospital rooms,

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surrounded by beeping machines

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and anxious, exhausted adults

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who have no other option

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but to say goodbye
under those harsh, institutional lights

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and among virtual strangers.

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For comparison's sake,

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the United Kingdom,

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

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and about half the size
of the state of California,

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has 54 hospice and respite centers.

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Why is that?

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I've asked myself that question
obviously many times.

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

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

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

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We go to extraordinary measures
to keep children alive

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when in fact the greatest kindness
that we might give them

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would be a peaceful, pain-free

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end of life.

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The transition from cure to care

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remains a challenging one
for many hospital physicians

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whose training has really been
about saving lives,

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

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

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certainly captured this dichotomy

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when he reflected

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

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but very few to help you usher a baby out.

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So what is the magic ingredient
at George Mark?

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The complex medical diagnoses
that bring our young patients to us

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mean that their lives
have often been restricted,

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some to a hospital bed
for long periods of time,

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others to wheelchairs,

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still others to intensive courses
of chemotherapy or rehab.

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We make a practice
of ignoring those limitations.

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Our default answer is "yes"

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and our default question is, "Why not?"

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That's why we took a young boy

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who wasn't going to live
for another baseball season

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to Game 5 of the World Series.

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

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for family and friends.

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

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because his arms are atrophied?

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That's why we have a prom every year.

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It's pretty magical.

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We started the prom

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after hearing a dad lament

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

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The weeks before the dance,

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the house is in a flurry,

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

NOTE Paragraph

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(Laughter)

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The night of the event

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involves rides in vintage cars,

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a walk on a red carpet

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into the great room,

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a terrific DJ

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and a photographer at the ready

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to capture pictures of these attendees

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and their families.

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At the end of the evening this year,

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one of our young,
delightful teenaged girls,

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Caitlin, said to her mom,

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

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And that's just the point,

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to capture the best days and nights,

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to abolish limitations,

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to have your default answer be "yes"

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and your default question be, "Why not?"

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Ultimately life is too short,

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whether we live
to be 85 years or just eight.

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Trust me.

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Better yet, trust Sam.

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

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that we keep the people,

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especially the little people that we love,

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safe.

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In the end,

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

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What we can control

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is how we spend our days,

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the spaces we create,

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the meaning and joy that we make.

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We cannot change the outcome,

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but we can change the journey.

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Isn't it time

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to recognize that children deserve

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nothing less than our
most uncompromising bravery

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and our wildest imagination.

NOTE Paragraph

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Thank you.

NOTE Paragraph

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(Applause)