Transcript: The Faces of Pediatric Palliative Care | Dec 20, 2019

A couple looks at a picture of their son.

The man says WE'D MISS HIM, BUT, YOU KNOW,
HE DIDN'T HAVE TO...
HE DIDN'T HAVE TO FIGHT ANYMORE.

A woman with a daughter in a wheelchair says IT'S SO FAR-FETCHED TO THINK
THAT YOUR CHILD WOULD GO
THROUGH ALL THIS BEFORE ONE.

A woman holds a picture of a little baby and says I DIDN'T WANT HER TO
DIE IN A HOSPITAL.
I WANTED HER TO AT
LEAST SEE A BIT OF THE WORLD.

The woman taking care of the girl in the wheelchair says I OFTEN GET ASKED THE QUESTION,
"HOW DO WE DO IT?
HOW DO WE WORK HERE?"

Rauni says WE WANT TO PACK AS MUCH LIFE
AS WE CAN INTO THEIR DAYS
BECAUSE WE CAN'T
ADD DAYS TO THEIR LIFE.

Rauni is in her fifties, with chin length blond hair with bangs and wears a black and gray stripe sweater.

A woman with brown hair in a bob cut says YOU DON'T KNOW, NONE OF US KNOW
WHEN OUR TIME IS GOING TO COME.

A woman with short blond hair says CAN'T SAY IT ENOUGH THAT
EMILY'S HOUSE WAS OUR HAVEN.

The narrator says IT'S A SPECIAL PLACE FOR KIDS,
KIDS WITH COMPLEX CONDITIONS,
KIDS WHO ARE DYING.
SINCE OPENING ITS
DOORS SIX YEARS AGO,
EMILY'S HOUSE HAS BEEN OFFERING
END OF LIFE AND RESPITE CARE
TO FAMILIES AND THEIR CHILDREN.

A caption reads "Rauni Salminen. Chief executive officer."

Rauni says WHEN A CHILD IS BORN,
WE'RE THERE FOR THEM -
THE SYSTEM IS THERE FOR THEM,
FAMILY IS THERE FOR THEM,
FRIENDS ARE THERE FOR THEM.
WE CELEBRATE THEIR BIRTH.
WELL, IN THE SAME WAY,
SOMEBODY'S GOT TO BE THERE
WHEN THAT PERSON
IS LEAVING THIS EARTH.

The narrator says EMILY'S HOUSE IS ONE OF
ONLY TWO DEDICATED
CHILDREN'S HOSPICES IN ONTARIO.

Rauni says OFTEN, FAMILIES WERE THE ONES
THAT ARE PROVIDING 24-7
CARE FOR THEIR CHILDREN,
AND WEREN'T GETTING
RESPITE BREAKS,
AND CHILDREN THAT WERE
TERMINALLY ILL AND DYING
OFTEN WERE IN ICU OR
DIED IN EMERGENCY ROOMS.
AND SO, WE SAW THE NEED TO
BUILD A CHILDREN'S HOSPICE
TO OFFER EXTRA SUPPORTS
FOR THESE FAMILIES.

The caption changes to "Amy Manning. Parent."

Amy is in her early thirties, with long straight brown hair and wears a pale pink cardigan sweater and a printed gray scarf.

She holds a picture of her young baby girl and says WE WERE TOLD THAT SHE
HAD OBVIOUSLY SUFFERED
SOME KIND OF TRAUMA
WHILE SHE WAS IN MY TUMMY,
AND THAT THERE WAS A POSSIBILITY
THAT SHE WAS GOING
TO BE A STILLBIRTH
AND WE JUST HAPPENED TO
CATCH IT BEFORE SHE PASSED AWAY.

The caption changes to "Chris Manning. Parent."

Chris is in his mid-thirties, with short wavy brown hair and a beard. He wears a black T-shirt with a print on the front.

He says THE TOUGHEST THING YOU'RE EVER
GOING TO HEAR IN YOUR LIFE.
I...
YOU FEEL NUMB.
YOU FEEL LIKE, YOU KNOW,
"THIS CAN'T BE REAL.
"OBVIOUSLY, I HAVE TO
BE DREAMING RIGHT NOW."

Amy says THEY DIDN'T KNOW EXACTLY HOW
LONG WE WOULD HAVE.
WE COULD HAVE A COUPLE DAYS,
WE COULD HAVE A WEEK,
WE COULD HAVE WEEKS.
THE MINUTE WE WALKED
THROUGH THE DOOR,
IT FELT LIKE HOME.
THEY WERE EXCITED TO
SEE US AND TO MEET GRACE.
THEY WERE OOHING
AND AHHING OVER HER.
AND IT WAS THE FIRST TIME
SINCE SHE WAS BORN
THAT I ACTUALLY
FELT LIKE A MOTHER.
WE WERE ABLE TO HAVE
ADVENTURES WITH HER
AND DO THINGS THAT WE HAD
DREAMED ABOUT DOING WITH HER
WHILE SHE WAS HERE.

Chris says I WAS ABLE TO WATCH
A HOCKEY GAME WITH MY DAUGHTER.
JUST HAVING THAT OPPORTUNITY
TO WATCH THAT GAME,
IT GIVES ME A MEMORY THAT I'LL
NEVER, EVER BE ABLE TO LOSE.

The narrator says GRACE LIVED FOR A TOTAL
OF EIGHT DAYS.
AND TO CELEBRATE HER SHORT LIFE
AND KEEP HER MEMORY ALIVE,
HER FAMILY RUNS AN ANNUAL
HOCKEY TOURNAMENT IN HER NAME
WITH PROCEEDS GOING
TO EMILY'S HOUSE.

Chris's T-shirt reads "Hockey for Grace."

Amy says THIS IS A PLACE
THAT YOU DON'T WANT TO BE
UNLESS YOU NEED TO BE HERE.
BUT WHEN YOU NEED TO BE HERE,
YOU'RE VERY, VERY HAPPY
THAT IT EXISTS.

A couple holds a picture of their special needs child.

The caption changes to "Marlene Geremia. Parent."

Marlene is in her fifties, with short straight blond hair and wears a pale blue shirt.

She says MATTHEW WAS A VERY HAPPY BOY.
HE WAS ALWAYS LAUGHING.
HE HAD THE CUTEST GIGGLE.

The caption changes to "Bruno Geremia. Parent."

Bruno is in his fifties, bald and with a beard. He wears a gray and black polo shirt.

He says THOUGH HIS 18 YEARS,
HE HAD A NUMBER OF STRUGGLES.

Marlene says BRUNO AND I CAME AND HAD
A TOUR OF EMILY'S HOUSE
AND IT WAS-- WE JUST THOUGHT,
"OH, THIS IS GREAT."

Bruno says IT REALLY FELT LIKE A HOME.
YOU'LL NOTICE THE KITCHEN IS
RIGHT IN THE CENTRE OF THE ROOM
AND THAT'S WHERE-- MOST HOUSES,
THAT'S THE WAY IT'S LAID OUT -
THE KITCHEN IS THE
CENTRE OF THE ROOM,
IT'S THE CENTRE OF ACTIVITY.
WE COULD HAVE OUR THANKSGIVING
DINNER, CHRISTMAS DINNER HERE.
WE CELEBRATE EASTER HERE.
WE CELEBRATED HIS BIRTHDAY HERE,
HIS 18TH BIRTHDAY.
HE DEFIED PREDICTIONS -
DOCTOR'S PREDICTIONS
OR ANYONE'S PREDICTIONS
ON, UH...
ON HOW LONG HE'D LIVE.

Marlene says HE OPENED HIS EYES WIDE,
LIKE IT WAS LIKE...
I SAID, "BRUNO,
HIS EYES ARE WIDE OPEN,"
AND HE LOOKED AT US
BOTH AS IF TO SAY,
"THANK YOU.
I LOVE YOU. GOODBYE,"
AND HE TOOK HIS LAST BREATH,
AND WAS, LIKE, SO PEACEFUL.

The narrator says THE HOSPICE NOT
ONLY PROVIDES SUPPORT
FOR SICK CHILDREN
AND THEIR PARENTS,
BUT ALSO FOR THEIR SIBLINGS.

The caption changes to "Heather Shillinglaw. Legacy and recreation coordinator."

Heather is in her thirties, with straight brown hair in a bob cut and wears a printed brown blouse and a black cardigan sweater.

She says WE REALLY WANTED A SPACE
FOR SIBLINGS TO FEEL WELCOMED.
LIKE, THEY'LL GO DOWN
THERE WITH A VOLUNTEER
OR SOMEONE JUST WHO WOULD BE
ABLE TO CONNECT WITH THEM.

The caption changes to "Daniel Geremia. Matthew's brother."

Daniel is in his mid-teens, with short red hair and wears a black shirt.

He says IN CASE YOU
DON'T WANT TO BE THERE
WHILE THEY'RE IN PAIN OR
SOMETHING LIKE THAT,
THEN THEY JUST GO
DO SEPARATE THINGS,
BUT WE DID DO
STUFF TOGETHER HERE.

The caption changes to "Alexander Geremia. Matthew's brother."

Alexander is in his mid-teens, with short red hair and wears a blue polo shirt.

He says SOME KIDS, THEY MIGHT JUST
THINK IT'S LIKE A HOSPITAL,
WHERE YOU JUST SIT AROUND
AND JUST WAIT, WHEREAS HERE,
THE STAFF WILL, LIKE-- THEY'LL
TRY TO DO THINGS WITH YOU
AND THEY'LL, LIKE,
HELP YOU A LOT.

The narrator says EMILY'S HOUSE OPERATES 24 HOURS
WITH A CENTRAL NURSING STATION
ON THE SECOND FLOOR.
IT HAS TEN BEDS FOR
BOTH END OF LIFE CARE
AND RESPITE PATIENTS.
THE CHILDREN HAVE
COMPLEX CONDITIONS,
INCLUDING CARDIAC
AND GENETIC DISEASES.

The caption changes to "Elizabeth Kagabe. Personal support worker."

Elizabeth is in her late thirties, with braided brown hair in a bun and wears a black and white printed blouse.

She says FIRST TWO-THREE YEARS, I USED TO
BEAT UP MYSELF SO HARD.
I USED EVEN TO QUESTION,
"WHY AM I HERE?
"IS THIS FOR ME?
IS THIS JOB FOR ME?"
I'M A MOTHER. SO, BEING A MOTHER
AND HAVING FIVE CHILDREN,
AND THE YOUNGEST IS
SPECIAL NEEDS TOO,
SO, FOR ME, I WON'T LIE -
IT'S TOUGH AND CHALLENGING.

Heather sings a song that says THERE'S A BIG, BIG CROWD..

Heather says WE ALSO HAVE OUR
RESPITE PROGRAMS,
WHICH ARE FOR FAMILIES
THAT HAVE BEEN DIAGNOSED
WITH A LIFE-LIMITING ILLNESS.
THEIR MEDICAL NEEDS
ARE QUITE UNIQUE,
AND SO THEY CAN REALLY BENEFIT
FROM MEDICAL CARE AND NEEDS,
SO THAT THE FAMILIES
CAN GET SOME REST.

The caption changes to "Kenisha McLeod. Parent."

Kenisha is in her thirties, with shoulder length wavy brown hair and wears a black and white gingham shirt.

She says FROM 11 MONTHS ON,
I BECAME THE MOTHER OF
A SPECIAL NEEDS CHILD.

The narrator says KENISHA MCLEOD HAS
BEEN TAKING HER DAUGHTER -
15-YEAR-OLD KIARA - TO EMILY'S
HOUSE FOR THE PAST FIVE YEARS.

Kenisha says THE RESPITE HERE
HAS BEEN A GODSEND
FOR OUR FAMILY
BECAUSE, UM, WHEN WE NEEDED IT,
IT WAS RIGHT HERE.
WHEN SHE'S HERE, I KNOW
SHE'S SAFE, SHE'S SUPER LOVED.
EVERYBODY HERE LOVES HER.
SO, THAT'S A PLUS.
SHE'S HAVING FUN.

The narrator says VOLUNTEERS ARE
A BIG PART OF THAT.
EMILY'S HOUSE OFFERS
VARIOUS THERAPY PROGRAMS,
LIKE MUSIC AND ART.
THEY ALSO HAVE A SENSORY ROOM
TO HELP ENGAGE CHILDREN
THROUGH LIGHTS, COLOURS,
SOUNDS AND SMELLS.

The caption changes to "Gavin Ridgeway. Volunteer."

Gavin is in his early thirties, with short wavy brown hair and a shadow of a beard. He wears a black sweater.

He says WHETHER THEY WANT
TO HANG OUT WITH ME,
WHETHER THEY WANT
TO JUST SIT AND WATCH TV
OR HAVE ME READ TO
THEM OR SING TO THEM,
WHATEVER THE CASE MAY BE,
I WAS THERE FOR THEM.
WHETHER YOU HAVE SIBLINGS,
MOM, DAD, GRANDPARENTS,
WHATEVER THE CASE MAY BE,
EVERYONE IS IMPACTED BY IT,
AND I THINK THE
OPPORTUNITY TO HELP THEM
FEEL A LITTLE BIT OF NORMALITY
IN A NOT-SO-NORMAL
SITUATION IS HUGE.

The caption changes to "Lisabeth Paisley-Smith. Volunteer."

Lisabeth is in her late forties, with long straight black hair and wears a black jacket and a pearl necklace.

She says I HAVE A HUGE RESPECT FOR THE
NURSES AND WHAT THEY DEAL WITH.
WE WORK ALONGSIDE THEM.
THEY DON'T GIVE US DIRECTION,
BUT THEY'LL ALWAYS BE
THERE FOR A SUGGESTION.
THEY WAY THEY HELP EACH OTHER
AND ARE VERY SENSITIVE TO THE
CHILDREN, IT'S STUNNING.

The narrator says EMILY'S HOUSE SEES ABOUT 400
ADMISSIONS A YEAR,
ROUGHLY 70 OF THOSE ARE FOR
END OF LIFE CARE.

The caption changes to "Lisa Brugger. Nurse."

Lisa is in her twenties, with long curly brown hair and wears a black hoodie.

She says WE HAVE CHALLENGING DAYS,
DAYS THAT ARE MORE
DIFFICULT THAN OTHERS.
BUT WE HAVE A STRONG SUPPORT
SYSTEM HERE AT EMILY'S HOUSE.
WE'RE ESSENTIALLY A BIG FAMILY.

The narrator says THE HOSPICE RECEIVES HALF OF
THEIR FUNDING FROM THE PROVINCE
AND THE OTHER HALF OF THEIR
BUDGET COMES FROM FUNDRAISING,
WHICH CAN BE A CHALLENGE.

Rauni says OFTEN, FUNDRAISING IS EASIER
WHEN YOU'RE PUTTING IT
TOWARDS RESEARCH
AND PUTTING IT TOWARDS A CURE.
BUT WHAT ABOUT CARE?
AND THAT'S
A LITTLE BIT DIFFERENT
AND MORE DIFFICULT
TO FUNDRAISE FOR,
WHEN YOU'RE TALKING
ABOUT PALLIATIVE CARE,
SPECIFICALLY PEDIATRIC
PALLIATIVE CARE.

Lisa says I'M INCREDIBLY INSPIRED
BY EVERY CHILD THAT COMES
THROUGH EMILY'S HOUSE'S DOORS.
YOU KNOW, THESE KIDS,
THEY GO THROUGH MORE
IN THEIR SHORT LIVES
THAN SOME ADULTS I KNOW,
AND, STILL, THEY'RE ABLE
TO LOVE UNCONDITIONALLY
AND FIGHT WITH A RESILIENCE
THAT I HAVE NEVER SEEN BEFORE.

(music plays)

The end credits roll.

Ontario Hubs Field Producer, Jeyan Jeganathan. @JeyanTVO.

Editor, David Erwin.

A slate appears with the caption "Ontario Hubs are made possible by: The Barry and Laurie Green Family Charitable Trust and Goldie Feldman."

Watch: The Faces of Pediatric Palliative Care