Elaine Dowell, Encephalitis Society
The Loss of a Child
IT IS A SHATTERING BLOW when someone dies whom you love. Whenever and however
death comes, it brings with it intense and painful feelings. Each and every
loss is personal. We are all unique as are the relationships we share with
others. Although bereavement affects us in very different ways the experience
of others may help us to acknowledge and face the reality of our own feelings, while
reassuring us that coping with the loss in our own way are acceptable and normal.
The initial feeling following a child’s death from encephalitis may be one
of numbness and disbelief. This feeling may last some weeks. It may
help you to cope with the tasks and arrangements that need to be undertaken at this
time, as well as enabling you to attend the funeral with some composure. Intellectually
you know what has happened but emotional recognition will come some time later.
In these early days, family and friends often provide support and encouragement,
but gradually they need to return to their own lives. This can leave you with
an overwhelming sense of the reality of your loss. With this reality can come
distress, sadness, physical pain, crying and sobbing. Your self-esteem and confidence
are rocked and you are left yearning to return to life as it used to be.
There may be real fear and bewilderment at the strength of your feelings.
Anger against God, the hospital, and the doctors. Bereavement can be followed
by a continuous and disbelieving search, but we cannot get the child back, and we
are left feeling frustrated and angry.
No one is left untouched by bereavement, each member of the family will be affected,
to a greater or lesser extent, each will want to help and support the others but
each will have an uncertainty of how to do this. Each person will react
to, and will deal with their feelings, in different ways. Perhaps by discussing
your own worries with a friend, counsellor, GP or a member of the Encephalitis Society,
you may be able to find ways of helping yourself as well as your family.
Your life is shaken up by the loss of a child; your physical health may suffer, with
frequent panic attacks, loss of appetite and sleep, nausea, aching limbs etc.
If this state continues over several weeks it is advisable to visit your doctor.
Whatever you do, try not to neglect yourself, allow time and space for the grieving
process.
There may be a feeling of no longer being part of the normal world but rather you
now belong to a race apart. People's reactions to you have changed overnight
because of their embarrassment and uncertainty. They may expect and want you
to come to terms with your grief more quickly than you feel able to, or they may
simply be feeling powerless to remedy your loss. For this reason, listed
in this booklet are some organisations that may be able to help.
Remember that whatever you are personally feeling – it is right for you, it
is completely normal and you will eventually learn to cope with this tragedy no
matter how you feel right now.
People from other cultures may well deal with death in ways that seem unfamiliar.
People in different parts of the world have developed their own ceremonies and ways
of mourning. Some see death as part of a circle of life. Some rituals
or ways of mourning may be public and demonstrative, others may be quiet and private,
and some may have fixed times whilst others do not. Whatever way a person
chooses to express their grief, you can almost guarantee that the feelings differ
little.
Children themselves may not always comprehend the implications of death or bereavement,
however they still feel loss in much the same way, they will still grieve and feel
distressed. Their period of mourning may be shorter than adults. Children
may feel responsible for the death of a sibling and may need a good deal of reassurance.
Young people may not speak of their grief because they can’t find the right
words or because they do not want to make the adults around then feel worse.
The grief of children and adolescents and their need for mourning should not be
overlooked when a child has died. It may help their understanding to include
them in the arrangements and attendance at the funeral.
Family and friends can be of most help by spending time with the bereaved person.
Being there during painful times, listening to them and sharing good and bad memories
shows you love and care for them when words are not enough. Don’t tell
people to pull themselves together or that life goes on. Allow people to mourn
in the way that is right for them. In time they will get over it but right
now they may cry, scream, repeat the same stories a lot or simply be quiet.
If you don’t know what to say or how to help, tell the bereaved person, this
allows them the opportunity to tell you what they need. Don’t avoid
talking about the child that has died, this will only add to their feelings of isolation
and grief. Remember that birthdays, anniversaries and Christmas can be sad
and lonely times – friends and relatives can make a special contribution on
those occasions.
"Children in Focus" is a specialist service which has been developed by
David Chadwick, who co-ordinates a group of funeral directors offering services
to families at this very sensitive time. The emphasis is on the needs of the
brothers and sisters of the child who has died, as well as parents.
David Chadwick writes:–
"Child bereavement is gradually being recognised as an area of major importance
by professional bodies nationwide. For years a small minority have campaigned
to bring the needs of bereaved children to the forefront of the professional agenda.
Working in partnership with hospitals, doctors and other professional bodies, funeral
directors can potentially offer immense support and practical advice to grieving
families. With the correct training they can also do a lot more to develop
their services to take into account the needs of the bereaved siblings along with
those of their parents. This is important, for it is believed that where children
are offered help, advice and the chance to be fully involved in saying last goodbyes
through the funeral, they will be better equipped to work through the bereavement
in the long run.
As parents reading this article, you may feel justifiably cautious about agreeing
with this sort of thinking but it is the needs of parents that spurred the initiative
called Children in Focus.
The project has been designed with a great deal of expert assistance and many months
of research to offer parents a range of products and services that will help them
to feel more confident about allowing their children the chance to say their own
last goodbyes. By concentrating upon the needs of siblings, we are trying
to support parents as they cope with their children's questions, fears and insecurities
in the months following the death."
The Children in Focus scheme offers:–
- Practical advice and support about children's funerals
- A new range of products specifically designed to take the needs of grieving siblings
into account
- A network of funeral homes available to parents in their local area through a free
telephone number (see below)
- Information about related services which can offer follow up help and counselling
should the need arise.
For further information please contact: Freephone 0800 801 4881.
The Child Bereavement Network
The Child Bereavement Project, Huntingdon House, 278-290 Huntingdon Street, Nottingham
NG1 3LY
Tel 0115 911 8070
Child Death Helpline
C/o Great Ormond Street Hospital, Great Ormond Street, London, WC1N 3JH
Freephone 0800 282 986
Compassionate Friends
53 North Street, Bristol BS3 IEN
Tel: 0207 953 9639 (Telephone Helpline for bereaved parents – 09.30am till
10pm)
CRUSE - Bereavement Care
Cruse House, 126 Sheen Road, Richmond, Surrey TW9 1UR
Helpline: 0208 332 7227 (Mon-Fri 9.30am to 5pm)
Foundation for the Study of Infant Deaths
35 Belgrave Square, London SW1X 8QB
Tel: 0207 235 1721 (Helpline) Tel: 0171-235 0965 (Switchboard)
Jewish Bereavement Counselling Service
P O Box 6748, London, N3 3BX
Tel: 0208 349 0839
Kokani Muslims
127 Hamilton Road, London, NW11 9EG
Tel: 0208 458 4677
Lesbian and Gay Bereavement
Helpline 0208 455 8894 (7pm till midnight)
London & National Association of Bereavement Services
356 Holloway Road, London N7 3PN
Tel: 0207-700 8134
National Association of Bereavement Services
20 Norton Folgate, London, E1 6DB
Tel: 0207 247 1080 (10am till 4pm)
Natural Death Centre
20 Heber Road, London, NW2 6AA
Tel: 0208 208 2853 (9.30am till 5.30pm)
Offers Advice and information to people wishing to arrange green, cheaper and do-it-yourself
funerals. Produces publication, supplies living wills and advance funeral;
directive forms.
Samaritans
Tel:0345 909090
E-mail: jo@samaritan.org
If you wish to remain anonymous, use e-mail below and reference to your name and
address will be deleted before message is transmitted: samaritan@anon/twwells.com
Sudden Death Support Association
Chapel Green House, Chapel Green, Wokingham, Berkshire, RG40 3ER
Tel: 01189 790790
This number is an answerphone and all calls will be returned within 24 hours.
Survivors of Bereavement by Suicide (SOBS)
Centre 88, Saner Street, Anlaby Road, Hull, HU3 2TR
Tel: 01482 565387 (7 days per week)
Following this list of books are a number of personal stories from families who
have lost a child with encephalitis.
Through Grief
By Elizabeth Collick, Claire Rayner
ISBN 0232516820
Facing Grief - Bereavement and the Young Adult 18-28
By Susan Wallbank
ISBN 0718828070
The Early Days of Grieving
By Derek Nuttall
ISBN 0906584299
A Grief 0bserved
By C S Lewis
ISBN 0571066240
What to Do When Someone Dies
By Paul Harris
ISBN 0852028164
I Will Remember You: What to Do When Someone You Love Dies: A Guidebook Through
Grief for Teens
By Laura Dower
ISBN 0439139619
Muddles, Puddles and Sunshine
An activity book for children to help them deal with the death of someone close.
From:–
Winston’s Wish, The Clara Burgess Centre, Westmoreland House
80-86 Bath Road, Cheltenham, Gloucestershire GL53 7JT
Helpline: 08452 03 04 05
E-mail:
admin@winstonswish.org.uk
You’ll Get Over It
By Virginia Ironside
ISBN 0140236082
When Parents Die
By Rebecca Abrams, Dora Black
ISBN 0415200660