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A Home Where The Heart Is

From Audrey Whitefield <a.whitefield@quest.org.uk>
Date 27 Feb 1997 02:49:13
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Jan. 27, 1997 
ANGLICAN COMMUNION NEWS SERVICE
Canon Jim Rosenthal, Director of Communications 
Anglican Communion Office
London, England

[97.1.4.6]

A Home Where The Heart Is

(ACNS) A chance telephone call 16 years ago from the parents of a
desperately sick
child let to the founding of a hospice movement for children which has
new
spread across the world. Maureen Cleave meets Sister Frances, the
founder
of Helen House Hospice, one of the charities in this year's Daily
Telegraph
Christmas Appeal.

SISTER FRANCES Dominica is a creature of impulse; she responds to the
woman
in trouble on the telephone,the stranger in distress at the gate. This
is
due partly to her calling - she is a nun,a member of the Society of All
Saints, an Anglican community in Oxford - and partly to her habit, when
young, of fainting at the sight of anything upsetting that she could do
nothing about.'It was at the Festival of Britain in 1951,' she said.  'I
must have been about nine. We went to the newly opened Festival Hall
which
was full of plate-glass doors.This woman walked straight into me. Her
nose
was smashed in, there was blood all over her face, yet it was I who
fainted.That,and other occasions, made me realise that to be an onlooker
in
the face of suffering is unbearable.'

She felt she had to pitch in and that is how Helen House, the world's
first
hospice for children, came into being in 1982.'It was so obvious what
had
to be done, she said.'The church must be a pioneer. God is always one
step
ahead.'

The story is well-known. As a result of a telephone call from a
stranger,
Sister Frances became friendly with the parents of Helen Worswick, a
little
girl of two-and-a half who had never recovered from an operation for a
massive brain tumour. When the doctors said there was no more to be
done,
her parents, Jacqueline and Richard, brought her home.'Home was where
she
belonged.  Whatever it costs in any terms, that was where she should be
cared for. But I watched her parents getting more and more tired,
looking
after her day and night, and a new baby day. So I asked them if they
would
trust me enough to lend her to me.' Helen would come to stay in Sister
Frances's room at the convent for a few nights at a time. She never
heard
Helen speak, never saw her smile, but she and the sisters came to love
her
and still do. She will be 21 in December. Sister Frances began to see
the
need for a place where such children and their parents could go for a
rest.

She is 54 but youthful in the disconcerting manner of nuns - tall and
graceful with swift, deft movements, blessed with energy and good
health.
She had just driven back from Ely, where she had been leading a
Methodist
retreat, and was leaning against a filing cabinet in the office at Helen
House, eating lunch from a tray behind her, chatting to Catherine
Wilson,
the secretary, and opening her letters. There was a cheque for 55 from
a
primary school in Ealing and an invitation to give a talk in Houston,
Texas, next summer.

Helen House costs 3,000 a day to run, all of it coming from voluntary
contributions, most of it in small sums.  Someone had just donated all
her
wedding cheques, with which some bright red garden furniture had been
bought. They never ask for money, but Catherine Wilson sends a
newsletter
to 7,000 people twice a year. She and Sister Frances were talking about
the
pervious weekend.

Once a year they close Helen House and have an open weekend for the
parents
of the 240 children who have stayed there and who have died since its
founding 14 years ago.There had been 100 parents on both the Saturday
and
Sunday. They attend a service in the nuns' chapel, walk in the garden,
have
lunch and talk.  Invariably they pick out their child's photograph on
the
pinboard in the playroom, their child's name in the book of remembrance.
The children may die at home or in hospital, but they are always
remembered
at Helen House. Some of the parents have been coming back for 10, 12
years.
Catherine keeps in touch with them all. She has worked there for six
years.
'Three children died in my first week, but there hasn't been a day when
I
didn't want to come in,' she said 'It's lovely.'

Most of the time it's good fun. The previous night some Morris dancers
had
arrived with a cheque for 1,000 and they had danced for the children in
the playroom. The following day she was off to London to pick up the
collection tins from Claridge's.

Helen House is for children with slowly progressive, life-limiting
diseases
such as muscular dystrophy. Other diseases are more obscure, and some
are
so rare they have yet to be named. Many are genetic, so you may find two
or
three children afflicted in the same family. The children come to Helen
House - up to eight at a time - at any stage during their illness, often
with their parents and siblings, and even their grandparents. Everyone
has
a good time, in particular the siblings, who often have less of their
parents' attention at home. Someone comes in specially to play with
them.
As Catherine says, 'We make the best of every day.' The house comprises
two
sides of a triangle, so the garden invades all the rooms.  Each child
has
his own. It's pretty, spacious, comfortable and the food is delicious.

There are 40 full and part-time staff, called the team. One of them is
allotted to each child for feeding, bathing, changing, turning, playing
with and cuddling, but they put their hand to anything. Two people do
the
weekly shopping and cooking. The night staff do the ironing. Catherine
had
just had the hoover out.  If they have one thing to give, it's their
time.
They always have time to talk to parents and children. The Worswicks can
remember, when Helen was desperately ill, having to leave notes pinned
to
her bed begging for information in case the consultant flashed in and
out
when they weren't there. Twenty-four hours a day, 365 days a year,
there's
someone on the telephone to talk to at Helen House.

Everyone has meals together - the team, parents, siblings, children if
well
enough, me. There are no uniforms, no plaques saying 'In Memory of...',
no
officious signs but for one - an illuminated green sign saying 'Exit',
on
which the safety regulation people insisted.  Sister Frances had been
affronted. 'When you come to stay with friends,' she said, 'you don't
expect to find illuminated green signs saying Exit.'

We were now in a small sitting-room.  If there is a mystery about Sister
Frances it is how her school, Cheltenham Ladies' College failed to spot
a
very effective operator. She is also a persuasive speaker and a good
writer, but as a schoolgirl, Frances Ritchie was a failure. The daughter
of
a chartered accountant and a musician, surrounded in childhood by high
hopes, she made three stabs at O-levels and even then got only five. 
But
she already knew what she had to do. 'I knew at the age of three that I
was
going to be a nurse.  My dolls and teddies were always ill. When I was 5
1/2, my brother was born with one lung and I used to visit him in Great
Ormond Street.  I had to mark time for the next 13 years. I think
nursing
is a very good basic grounding for anything in life. It teaches you
common
sense, compassion and sense of humour.  You meet people at their most
vulnerable, and when they recover you help them to become independent.'
The
Royal College of Nursing has made her a Fellow, which pleases her very
much, but prompts the wry reflection that, with five 0-levels, the
profession would now be closed to her.

She believes that religious faith is caught, not taught, and hers was
caught from her grandfather, an elder of the Church of Scotland for 49
years. 'He rarely talked about God - he just lived his faith, and
example
is infinitely more telling than words.  I can recall sitting beside him
in
church, not understanding a word but being overawed by the mystery of it
all. I was confirmed when I was 16, and felt rather frightened by my
religious fervour.  I hate God to be dramatic, and he has tended to be
dramatic in my life from time to time.  It's a grievance I have.  But
when
I started nursing in Great Ormond Street, church dropped off a bit.'

It was during her general training at the Middlesex that she nursed a
priest for six weeks after a coronary thrombosis. 'He had strangely clad
visitors, nuns heavily swathed in black, clutching black books with
coloured markers.  He was an extreme Anglo-Catholic in his allegiance.
When he left, he said to keep in touch, as lots of people do.'

She found herself having tea with him in Clerkenwell and she began to go
to
his church. 'I didn't fall in love with God at this stage, but I became
more and more committed.  Nine months later, I went on a pilgrimage to
Walsingham for the weekend, and this was a very emotional episode in my
life.  I didn't know whether to be absolutely thrilled or horrified by
the
extremity of people's faith. It was a long way from the Church of
Scotland
and from Quakerism.  At the time, Elizabeth Fry was my great heroine,
with
her desire for social justice, simplicity of life and love of silence.
Besides, I had my future planned, all good missionary stuff. I would
work
for Save the Children, nursing war wounded in Vietnam, and then marry,
have
five children and adopt five more.

'On Sunday morning, October 4, 1964, waiting in church for the service
to
begin, I knew what I was going to do.  It was God being dramatic again.'

She completed her training and went to visit a convent belonging to the
Society of All Saints outside St Albans.'The bus put me down at the
bottom
of a poplar-lined drive, and I thought to myself, This is it.' There was
consternation in the family; the whole thing smacked of Rome.' In the
religious life you have eight years to make your final decision. Not
many
engagements last that long - marriage is far more risky.  But I had no
doubts from start to finish - I had fallen in love with God. Just as in
marriage, this heady experience gave way to a steadier loving, the kind
that sees you through ups and downs.  Do you know the Butterfly song? 
"If
I were a butterfly, I'd thank you Lord for giving me wings,"  Each verse
ends, "But I just thank you Father for making me, me".  That's how I
feel.
I want it sung at my funeral; I've told the Sisters.'

In the end her family came round - indeed, her parents now live in the
convent grounds - and the Order, recognising what Cheltenham Ladies'
College had not, made her Mother General at the astonishingly early age
of
34.  She had three houses in England and two in America in her charge,
and
the sisters in the Oxford house had two surprises in store for them. 
The
first of these was the building of Helen House in their large garden of
the
Cowley Road.

Sister Frances had the idea in February 1980. By November 1982, they had
raised 1 million, built Helen House and opened it to children. 'We just
had a little working party, including Helen's parents,' she said. 'I'm
allergic to committees.  We had no governing body, no board, no official
fundraiser.  All Saints is a registered charity, so we had a structure
and
trustees in place. There was nothing to stop us getting on with it. 
Once
the plans were drawn up, the money flowed in and everything fell into
place.'

She is now honorary director.  She does the speaking, travelling all
over
the world talking about it and the care of sick and dying children.  In
1989 she asked no to be re-elected as Mother General.' To the relief of
the
community,' she said lightly. 'You tend to run out of creative energy.'
Besides, she had already sprung her second surprise.

In 1988 she had gone to Ghana to lead a clergy conference on healing. 
She
was invited to visit a hospital. 'There on a bed was this little chap.
There had been a terrible drought and he and his mother were starving -
she
couldn't look after him.  He was 10 months old and he weighed eight
pounds.
He grinned up at me and held out his arms.  I picked him up and cuddled
him.  They closed that ward because of cholera and the next time I saw
him
he'd been moved.  He wasn't even in a cot but on a piece of cloth on a
concrete floor and he was grey with gastro-enteritis.  The doctor said
he
would not survive.'

The reader mindful of paragraph one will know what happened next.

'I found myself saying, "Can I take care of him?"  I'd fallen in love
with
him - he was absolutely beautiful.  I couldn't bear to think of him
dying.
I left some money for him with the doctor.  And then I thought, "My God,
what have I done?"  We were 25 sisters in the convent; there would be 25
different reactions - from ecstasy to shock horror.'

The baby was not expected to survive, but he did, and arrived two weeks
later at Heathrow Airport with a spare nappy, a KLM rug saying Property
of
Royal Dutch Airlines, a bib and a toy elephant the stewardess had given
him.  He could not sit unsupported, couldn't hold objects, couldn't
sallow
solid food.  Five and half months later, with the devoted attention of
so
many admirers, he was walking.  Two years ago she adopted him officially
and they now live in a flat together near the convent.  This February
they
went back to Ghana to meet his birth parents and baby sister, call
Frances
after her.

There are now 11 hospices for the children in Britain and more in the
planning.  They are being built in Canada, the US and Australia.  Sister
Frances said, 'In St Paul's Epistle to the Ephesians, he says, "We are
God's work of art."  However helpless a person, they are deserving of
infinite respect, infinite love, infinite care.  They are very damaged
works of art, but in God's eyes they are infinitely precious.'

The art of living we can all work at, not so the art of dying.  The more
sophisticated a society, she said, the less well it will cope with
death.
She learnt what she now knows from a Protestant Irishwoman who came to
the
door of the convent one day to ask for help.  'She had a 10-year-old
daughter dying of cancer and she was desperate.  I went with her to see
the
specialist in London and at the end of her daughter's life I went to
live
with her.  She was a single parent and she needed a friend.

'When her daughter died, I could see she wasn't going to let any
undertaker
or priest take charge.  She laid her daughter's body on her own bed,
washed
her and dressed her beautifully and lifted her body into the coffin. 
She
knew exactly what to do.  She hadn't lost touch with her roots; she did
everything for her child to the last.  It was because of her that I
planned
the little room.'

When children die in Helen House - sometimes if they die in hospital or
even at home - they often come to lie in this small bedroom, which is
kept
especially cold.  There's a bed with a green quilt decorated with
daffodils
and geese.  When your child dies, Sister Frances said, you tend to think
everything is beyond your control.  Here, parents and family can wander
in
and out of the little room, tend the body of their child, arrange
favourite
toys and objects.  In the sitting-room next door they can plan the
funeral,
taking their time for there is no hurry.  'Only they can do it to
perfection,' she said.

We can all help.  'It's one of my hobby horses,' she said.  'We're so
used
to being referred to experts that, when we're faced with someone
grieving,
our instinct is to undervalue ourselves.  But we all have what it takes,
just by being fully human.  Parents will tell you they don't want good
advice, they don't want people to say the right thing.  They just want
someone to say, "How are you?" and wait long enough to hear the answer.'

She herself has witnessed many deaths, most of them young children and
teenagers.  'Sometimes when I'm giving a talk I'm asked, "How do you do
this job without getting emotionally involved?"  And the answer is, you
couldn't do it if you weren't  emotionally involved.  I don't mean
making a
nuisance of yourself and getting in the way, but to show emotion is
sometimes a comfort to the family.  The parents of a child who took a
turn
for the worse told me they were very touched when the doctor broke down
and
cried.

'Death can be very ugly, but people have buried with them the strength
and
dignity to meet it; and, given encouragement and loving surroundings,
they
will do this with what I can only describe as a severe beauty.  I
believe
in the Resurrection, that death is not the end but the beginning, an I
have
yet to meet a mother or father who believed at the moment of death that
their child had ceased to exist.'

c Maureen Cleave 1996. This article was first published in the Telegraph
Magazine.
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