Stories from a home for terminally ill children | Kathy Hull

Prevoditelj: Nina Sabolić Recezent: Ivan Stamenković

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

Želim vas upoznati s nekom vrlo mudrom djecom koju sam upoznala,

but first I want to introduce you to a camel.

ali prvo vas želim upoznati s jednom devom.

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

Ovo je Cassie, terapijska deva u posjetu jednoj našoj mladoj pacijentici

in her room,

u njenoj sobi,

which is pretty magical.

što je prilično čarobno.

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

Moj prijatelj uzgaja deve na svom ranču u planinama Santa Cruz.

He has about eight of them,

Ima ih otprilike osam,

and he started 30 years ago

i počeo je prije 30 godina

because he thought horses were too mundane.

jer je mislio da su konji presvakodnevni.

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

John razmišlja izvan okvira,

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

što objašnjava zašto smo nas dvoje tako dobri prijatelji

all of our lives.

cijele svoje živote.

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

Kroz godine sam ga uvjerila da lansira te slatke dlakave zvijeri

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

u druženje s našom bolesnom djecom s vremena na vrijeme.

Talking to John, I was surprised to learn

Pričajući s Johnom, iznenadilo me

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

da deve imaju prosječni životni vijek od 40 do 50 godina.

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

Životni vijek mnoge djece s kojom ja radim

is less than a year.

je manje od godinu dana.

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

Ovo je slika Dječje kuće Georgea Marka,

the first pediatric palliative respite care center

prvog pedijatrijskog centra za palijativnu njegu i boravak

to open in the United States.

u Sjedinjenim Američkim Državama.

I founded it in 2004,

Osnovala sam ju 2004.,

after years of working as a psychologist

nakon što sam godinu dana radila kao psiholog

on pediatric intensive care units,

na pedijatrijskim odjelima intenzivne njege,

frustrated with the undignified deaths that so many children experienced

frustrirana nedostojanstvenom smrću koju su brojna djeca doživjela

and their families had to endure.

i s kojom su se njihove obitelji morale nositi.

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

Kad sam sjedila s obiteljima čija djeca su bila na samrti,

I was acutely aware of our surroundings.

bila sam svjesna okruženja.

While the elevated train rumbled overhead on its track,

Kako bi vlak tutnjao po tračnicama,

quite literally the room reverberated with each passing train car.

to bi doslovno odjekivalo u sobi.

The lights on the ward were fluorescent and too bright.

Svjetla u bolnicama bila su florescentna i prejaka.

Monitors beeped, as did the elevator,

Monitori su pištali, dizalo također,

noisily announcing its arrival.

glasno najavljujući dolazak.

These families were experiencing

Ove obitelji su doživljavale

some of the most excruciating moments of their lives,

najbolnije trenutke svojih života,

and I so wanted them to have a more peaceful place

i jako sam željela da imaju mirnije mjesto

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

za posljednji oproštaj sa svojim mladim kćerima i sinovima.

Surely, I thought,

Zasigurno, mislila sam,

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

mora biti boljeg mjesta od intenzivnog odjela bolnice

for children at the end of their lives.

za djecu na kraju života.

Our children's house

Naša dječja kuća

is calm and nurturing.

je mirna i njegujuća.

It's a place where families can stay together

To je mjesto gdje obitelji mogu ostati zajedno

to enjoy quality time with their children,

i imati kvalitetno vrijeme sa svojom djecom,

many of whom are there for respite stays,

od kojih su mnoga tamo na boravku,

some with repeated visits over a span of many years.

a neka s učestalim dolascima kroz dulji niz godina.

We call those kids our frequent flyers.

Zovemo tu djecu čestim letačima.

Rather than the bright, noisy quarters of the hospital,

Umjesto svijetlih, glasnih odjeljaka bolnice,

their rooms are calm and comfortable,

njihove sobe su mirne i udobne,

with actual living spaces for the families,

s pravim životnim prostorom za njihove obitelji,

a sanctuary of gardens

vrtno utočište

and a wonderful outdoor playground

i prekrasno vanjsko igralište

with special structures for children with physical limitations.

s posebnim spravama za djecu s tjelesnim poteškoćama.

This sweet baby Lars

Ova slatka beba Lars

came to us directly from a hospital intensive care unit.

došao je k nama direktno s bolničkog odjela intenzivne njege.

Imagine hearing the heartbreaking news

Zamislite čuti srcedrapajuće vijesti

that none of us would ever want to hear.

koje nitko od nas nikad ne bi želio čuti.

His parents had been told that Lars had a brain anomaly

Njegovim roditeljima je rečeno da Lars ima anomaliju mozga

that would keep him from ever swallowing,

koja bi ga sprječavala u gutanju,

walking, talking

hodanju, govorenju

or developing mentally.

i u mentalnom razvoju.

Recognizing what little chance he had for survival,

Prepoznajući da ima male šanse za preživljavanje,

his parents chose to focus on the quality of time

njegovi roditelji odabrali su fokusirati se na kvalitetu vremena

that they could spend together.

koje bi mogli provesti zajedno.

They moved into one of our family apartments

Preselili su se u jedan od naših obiteljskih apartmana

and treasured each day that they had,

i cijenili svaki dan koji su imali

which were far too few.

a kojih je bilo premalo.

Lars's life was brief, to be sure,

Larsov život je bio kratak, svakako,

mere weeks,

par tjedana,

but it was calm and comfortable.

ali je bio miran i ugodan.

He went on hikes with his parents.

Išao je u šetnje s roditeljima.

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

Vrijeme provedeno u bazenu s našim terapeutom

lessened the seizures he was experiencing

smanjilo je napadaje koje je doživljavao

and helped him to sleep at night.

i pomoglo da spava noću.

His family had a peaceful place

Njegova obitelj imala je mirno mjesto

in which to both celebrate his life

gdje su ujedno slavili njegov život

and mourn his death.

i oplakivali njegovu smrt.

It has been five years since Lars was with us,

Prošlo je pet godina otkad je Lars bio s nama,

and in that time,

i u to vrijeme,

his family has welcomed

njegova obitelj je dočekala

a daughter and another son.

kćer i još jednog sina.

They are such a powerful testament

Oni su tako moćno svjedočanstvo

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

pozitivnog ishoda koji specijalizirani hospicij za djecu može imati.

Their baby's physical discomfort was well managed,

Fizička nelagoda njihove bebe dobro je zbrinuta,

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

dajući im vremena da budu zajedno na predivnom mjestu.

I'm going to talk to you now

Sada ću vam govoriti

about the elephant

o slonu

rather than the camel in the room.

umjesto o devi u prostoriji.

Very few people want to talk about death,

Jako malo ljudi želi pričati o smrti,

and even fewer about children's death.

i još manje i smrti djece.

Loss of a child,

Gubitak djeteta,

especially for those of us who have our own children,

osobito za nas koji imamo svoju djecu,

is frightening,

je zastrašujuće,

more than frightening,

više nego zastrašujuće,

paralyzing,

paralizirajuće,

debilitating,

oslabljujuće,

impossible.

nemoguće.

But what I've learned is this:

Ali ovo sam naučila:

children don't stop dying

djeca ne prestaju umirati

just because we the adults

samo zato što se mi odrasli

can't comprehend the injustice of losing them.

ne možemo nositi s nepravdom njihova gubitka.

And what's more,

Štoviše,

if we can be brave enough

ako možemo biti dovoljno hrabri

to face the possibility of death,

suočiti se s mogućnošću smrti,

even among the most innocent,

čak i među najnevinijima,

we gain an unparalleled kind of wisdom.

steknemo neusporedivu vrstu mudrosti.

Take Crystal, for example.

Uzmimo Crystal za primjer.

She was one of the first children to come for care

Ona je bila među prvom djecom koja su došla

after we opened our doors.

kad smo otvorili svoja vrata.

She was nine when she arrived,

Imala je 9 godina kad je došla,

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

i njen neurolog je mislio da ima još možda dva tjedna života.

She had an inoperable brain tumor,

Imala je neoperabilan tumor na mozgu,

and her decline had really accelerated

i njeno propadanje se dosta ubrzalo

in the week before she came to us.

tjedan prije nego je došla k nama.

After settling into her room,

Nakon što se smjestila u sobu,

dressed entirely in pink and lavender,

cijela obučena u ružičasto i lila,

surrounded by the Hello Kitty accessories that she loved,

okružena Hello Kitty ukrasima koje je voljela,

she spent the next several days

provela je sljedećih nekoliko dana

winning over the hearts of every staff member.

osvajajući srca cijelog osoblja.

Bit by bit, her condition stabilized,

Malo po malo, njeno se stanje stabiliziralo,

and then to our astonishment,

i onda začudo,

she actually improved.

bilo joj je bolje.

There were a variety of factors

Bilo je puno faktora

that contributed to Crystal's improvement

koji su potpomogli njeno napredovanje

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

koje smo kasnije nazvali "George Mark čudo",

a lovely, not uncommon phenomenon

divan, ne neuobičajen fenomen

where children outlive the prognoses of their illnesses

kad djeca nadžive prognoze bolesti

if they're outside of the hospital.

ako su izvan bolnice.

The calmer atmosphere of her surroundings,

Mirnija atmosfera kojom je bila okružena,

tasty meals that were fixed often to accommodate her requests,

ukusni obroci koji su često bili spremani prema njenim željama,

the resident pets,

kućni ljubimci,

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

terapijski pas i zec proveli su puno zabavnog vremena s Crystal.

After she had been with us for about a week,

Nakon što je bila s nama tjedan dana,

she called her grandmother,

nazvala je svoju baku,

and she said,

i rekla je,

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

"U velikoj sam odličnoj kući,

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

i ima mjesta i za tebe da dođeš.

And guess what?

I pogodi što?

You don't have to bring any quarters

Ne moraš ponijeti novčiće

because the washer and dryer are free."

jer su perilica i sušilica rublja besplatne."

(Laughter)

(Smijeh)

Crystal's grandmother soon arrived from out of town,

Crystalina baka je ubrzo došla iz drugog grada,

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

i provele su preostalih četiri mjeseca Crystalina života

enjoying very special days together.

provodeći posebne dane zajedno.

Some days were special because Crystal was outside in her wheelchair

Neki dani su bili posebni jer je Crystal bila vani u svojim kolicima

sitting by the fountain.

sjedeći kraj fontane.

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

Za malu djevojčicu koja je provela prethodne mjesece u bolničkom krevetu,

being outside counting hummingbirds

boravak vani s ptičicama

made for an amazing time with her grandma,

to je nadoknadio, i lijepo druženje s bakom,

and lots of laughter.

i puno smijeha.

Other days were special because of the activities

Drugi dani bili su posebni zbog aktivnosti

that our child life specialist created for her.

koje je dječji specijalist pripremio za nju.

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

Crystal je nizala kuglice i radila nakit za sve u kući.

She painted a pumpkin to help decorate for Halloween.

Bojala je bundevu da pomogne s ukrasima za Noć vještica.

She spent many excited days planning her tenth birthday,

Provela je puno uzbuđenih dana planirajući svoj deseti rođendan,

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

koji naravno nitko od nas nije mislio da će doživjeti.

All of us wore pink boas for the occasion,

Svi smo nosili ružičaste perjane šalove za tu prigodu,

and Crystal, as you can see,

i Crystal, kao što vidite,

queen for a day,

kraljica dana,

wore a sparkly tiara.

imala je sjajnu tijaru.

One hot morning, I arrived at work

Jednog vrućeg jutra, došla sam na posao

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

i Crystal i njen partner u zločinu, Charlie, pozdravili su me.

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

Uz malo pomoći, postavili su štand za limunadu i kekse

outside the front door,

ispred ulaznih vrata,

a very strategic location.

vrlo strateška lokacija.

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

Pitala sam Crystal za cijenu keksa koji sam odabrala,

and she said, "Three dollars."

i rekla je, "Tri dolara."

(Laughter)

(Smijeh)

I said that seemed a bit high for one cookie.

Rekla sam da se to čini skupo za jedan keks.

(Laughter)

(Smijeh)

It was small.

Bio je malen.

"I know," she acknowledged with a grin,

"Znam," rekla je sa smiješkom,

"but I'm worth it."

"ali sam vrijedna toga."

And therein lie the words of wisdom

I tu leže mudre riječi

of a young girl whose brief life forever impacted mine.

male djevojčice čiji je kratak život zauvijek utjecao na moj.

Crystal was worth it,

Crystal je bila vrijedna toga,

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

i ne bi li svako dijete čiji je život skraćen užasnom bolešću

be worth it?

trebalo biti vrijedno?

Together, all of us today

Zajedno, svi mi danas

can offer that same specialized care that Crystal received

možemo ponuditi tu istu specijaliziranu njegu koju je Crystal primala

by recognizing that children's respite and hospice care

prepoznajući da je dječja hospicijska njega

is a critical component missing from our healthcare landscape.

ključna komponenta koja nedostaje u našem zdravstvu.

It's also interesting to note

Zanimljivo je primijetiti

that we are able to provide this care

da možemo osigurati ovu njegu

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

za otprilike trećinu troškova intenzivne bolničke njege,

and our families don't see a bill.

i naše obitelji ne dobiju račun.

We are ever grateful to the supporters

Zahvalni smo pobornicima

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

koji vjeruju u naš važan rad koji radimo.

The truth is that my colleagues and I

Doista, moji kolege i ja

and the parents and other family members

i roditelji i drugi članovi obitelji

who get to experience this special wisdom

koji iskuse ovu posebnu mudrost

are in a unique position.

smo u jedinstvenom položaju.

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

Samo su dva samostalna hospicija u SAD-u,

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

iako sam sretna objaviti da bazirano na našem modelu,

there are 18 others under various stages of development.

18 drugih su u različitim fazama nastajanja.

(Applause)

(Pljesak)

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

Ipak, većina djece koja umre u SAD-u svake godine

die in hospital rooms,

umre u bolničkim sobama,

surrounded by beeping machines

okružena pištajućim strojevima

and anxious, exhausted adults

i nervoznim, izmorenim odraslima

who have no other option

koji nemaju druge opcije

but to say goodbye under those harsh, institutional lights

nego se pozdraviti pod tim jarkim institucijskim svjetlima

and among virtual strangers.

i među brojnim strancima.

For comparison's sake,

Za usporedbu,

the United Kingdom,

Ujedinjeno Kraljevstvo,

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

koje je zemlja s otprilike jednom petinom populacije SAD-a,

and about half the size of the state of California,

i otprilike upola manja od Californie,

has 54 hospice and respite centers.

ima 54 hospicijskih centara za njegu.

Why is that?

Zašto?

I've asked myself that question obviously many times.

Pitala sam se to pitanje očito mnogo puta.

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

Moja pretpostavka je da Amerikanci, s našim pozitivnim možemo-mi-to stavom

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

imamo očekivanja da će naše zdravstvo riješiti to,

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

iako se možda radi o dječjoj bolesti kojoj nema lijeka.

We go to extraordinary measures to keep children alive

Poduzimamo ekstremne mjere da održimo djecu na životu

when in fact the greatest kindness that we might give them

kad bi zapravo najbolje što bismo im mogli dati

would be a peaceful, pain-free

bio miran, bezbolan

end of life.

kraj života.

The transition from cure to care

Prijelaz od liječenja do njege

remains a challenging one for many hospital physicians

ostaje vrlo zahtjevan za mnoge bolničke liječnike

whose training has really been about saving lives,

koji zapravo uče kako spašavati živote,

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

a ne nježno voditi pacijente kraju njihova života.

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

Otac slatke bebe za koju smo brinuli do kraja života

certainly captured this dichotomy

zasigurno je uhvatio tu dihotomiju

when he reflected

kad se osvrnuo

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

na to da ima puno ljudi koji će pomoći donijeti novorođenče na svijet

but very few to help you usher a baby out.

ali jako malo koji će pomoći ispratiti dijete s njega.

So what is the magic ingredient at George Mark?

Pa što je čarobni sastojak u George Marku?

The complex medical diagnoses that bring our young patients to us

Kompleksne medicinske dijagnoze koje dovedu mlade pacijente k nama

mean that their lives have often been restricted,

često znače da su njihovi životi ograničeni,

some to a hospital bed for long periods of time,

neki za bolnički krevet na duge vremenske periode,

others to wheelchairs,

neki za invalidska kolica,

still others to intensive courses of chemotherapy or rehab.

mnogi ostali za intenzivne tretmane kemoterapije i rehabilitacije.

We make a practice of ignoring those limitations.

Mi prakticiramo ignoriranje tih ograničenja.

Our default answer is "yes"

Naš zadani odgovor je "da"

and our default question is, "Why not?"

a naše zadano pitanje je "Zašto ne?"

That's why we took a young boy

Zato smo uzeli malog dječaka

who wasn't going to live for another baseball season

koji nije trebao doživjeti sljedeću sezonu bejzbola

to Game 5 of the World Series.

do Svjetskog natjecanja.

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

Zato imamo nastup talenata koje priređuju zaposlenici i djeca

for family and friends.

za obitelji i prijatelje.

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

Tko ne bi bio očaran malim dječakom koji svira klavir svojim stopalima,

because his arms are atrophied?

jer ima atrofiju ruku?

That's why we have a prom every year.

Zato imamo ples svake godine.

It's pretty magical.

Prilično je čarobno.

We started the prom

Započeli smo plesove

after hearing a dad lament

nakon što se jedan otac žalio

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

da nikad neće nikad staviti cvijet na rever sinovog smokinga.

The weeks before the dance,

Tjednima prije plesa

the house is in a flurry,

u kući je užurbano,

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

i ne znam tko je uzbuđeniji, zaposlenici ili djeca.

(Laughter)

(Smijeh)

The night of the event

Noć događaja

involves rides in vintage cars,

uključuje vožnje u starim autima,

a walk on a red carpet

šetnju crvenim tepihom

into the great room,

u glavnu sobu,

a terrific DJ

odličan DJ

and a photographer at the ready

i fotograf koji čeka

to capture pictures of these attendees

da poslika djecu

and their families.

i njihove obitelji.

At the end of the evening this year,

Na kraju događaja ove godine,

one of our young, delightful teenaged girls,

jedna od naših mladih, divnih tinejdžerki,

Caitlin, said to her mom,

Caitlin, rekla je svojoj mami,

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

"To je bila najbolja noć mog života."

And that's just the point,

I upravo to je poanta,

to capture the best days and nights,

uhvatiti najbolje dane i noći,

to abolish limitations,

ukinuti ograničenja,

to have your default answer be "yes"

imati zadani odgovor "da"

and your default question be, "Why not?"

i zadano pitanje "Zašto ne?"

Ultimately life is too short,

Na kraju krajeva život je prekratak,

whether we live to be 85 years or just eight.

trajao on 85 ili samo osam godina.

Trust me.

Vjerujte mi.

Better yet, trust Sam.

Ili bolje, vjerujte Samu.

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

Nije pretvaranje da smrt ne postoji

that we keep the people,

ono što čuva ljude,

especially the little people that we love,

pogotovo malene ljude koje volimo,

safe.

sigurnima.

In the end,

Na kraju,

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

ne možemo kontrolirati koliko će itko od nas živjeti.

What we can control

Ono što možemo kontrolirati

is how we spend our days,

je kako provodimo dane,

the spaces we create,

ispunjavamo prostore,

the meaning and joy that we make.

i smisao i sreća koje stvaramo.

We cannot change the outcome,

Ne možemo promijeniti ishod,

but we can change the journey.

ali možemo promijeniti putovanje.

Isn't it time

Nije li vrijeme

to recognize that children deserve

da prepoznamo da djeca ne zaslužuju

nothing less than our most uncompromising bravery

ništa manje od naše beskompromisne hrabrosti

and our wildest imagination.

i naše najbujnije mašte.

Thank you.

Hvala vam.

(Applause)

(Pljesak)