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Discovering that your child is suffering from a life threatening illness is one of the most traumatic and stressful events that a parent can experience.
Here are some things that may help you in the coming months.
* Make sure that your child is seen by a doctor with the specialist expertise in childhood cancer. These paediatric oncologists mostly work in the specialist referral centres at major hospitals. See the page on treatment for more details.
* Remember that many cancers and blood disorders can be treated successfully.
* Have a look at the "Open letter to a parents"; it will hopefully give you some reassurance that your reactions are quite normal.
* Take some time to navigate this site, and please contact your nearest regional CHOC branch for further information. Contacts
* If you want more information, there are lots of resources available. The local CHOC division should be able to help you, and there is lots to see on the web site of the International Confederation of Childhood Cancer Parents Organisations (ICCCPO), of which CHOC is a member. Have a look at their site, and follow some of the links to other sites about childhood cancer.
Open letter to Parents:
You have just started into one of the periods of your life that you will always remember.
You never thought that something like this could happen to your child.
You thought that it was your right that your child would grow up to be just like you, with the occasional illness or broken limb, but you never anticipated an illness that could take their life.
Now you know differently, and if you are like most of us who have been down this path ahead of you, then your outlook on life will probably be changed for ever from this week onwards.
During the next few weeks you will go through many emotions:
- you will feel anger at the unfairness of it;
- you will grieve that all of the dreams you had for your child could come to nothing;
- you will try to bargain with God to cure your child;
- you will blame yourself for causing the illness;
- you will regret not doing things with your child that you intended to;
- you will feel lost and confused by lots of medical jargon and new words;
- you will agonise over what you should tell your children, your parents, your friends;
- and you will wonder how you will cope with it all.
In other words, you will behave just like all the rest of us parents who have been in your situation.
You will have to develop your own methods for coping with things, depending on your own personal situation. However you may find a few guidelines useful as a starting point.
Be honest and open about the illness, to your relations and friends, to the school, your employers, but most of all to yourselves and to your children. Your child will know that they are ill; don’t make them hide their feelings to try to protect you.
Your family and friends will not at first know what to say to you, and they will be very uncomfortable with you. The more openly you talk about things, the easier it will be for them to respond to you and give you the help that you will need so much in the coming months.
Get used to saying the name of the illness out loud. Words like cancer and leukaemia are normally only spoken in hushed voices, and never in the presence of someone who has them. It will be with you for a long time, so get used to saying it, and even to talk about death. It makes it much easier for all of your family and friends to talk openly if you do so.
Don’t be ashamed to feel or show emotion; it just shows that you are human. If you didn’t feel angry, sad, confused, and many other emotions, when you learned of the diagnosis, then you are very unusual. Don’t forget that your sick child, and your other children, will have to cope with many new experiences and emotions. Let them see that its all right to feel afraid, to be unsure, to cry at times.
Remember that you are in this as a family. Many families, who have a good marriage to start with, find that they are all strengthened by the experience; but it is not unusual for a marriage to be very stressed by all the extra demands that an illness like this will put on it.
Don't forget the siblings. Brothers and sisters of the sick child are also affected by the illness in the family. They see their parents giving all of their attention to the other child, and can feel very neglected and confused.
Call on all the resources that you have. Use your family and friends; if they are true friends they will be only too glad to help you now that you really need them. Use your church; get people to pray for you and your child. You will be surprised how much and how readily people will open up and help you, if only they know how; and that is why you need to make your needs known.
There are no guarantees. The medical staff will do their best; there may be a very good prognosis for your child; but it is still a life threatening illness, and you will live with this for a long time.
Don’t be afraid to ask the medical staff. You will probably not take in half of what is said in the early discussions, and there will be a whole new vocabulary in your life. Keep notes of the questions you want to ask. There is a lot of literature about, and you will want to get as much knowledge as possible, so ask the staff what they recommend.
There will be times when all seems very dark, and some very happy times.
The best way to get through the coming weeks and months is to take it one day at a time.
May you find the strength in yourself, your family and your friends to grow through this trying time in your lives.
Written by Julian Cutland - Parent (CHOC Childhood Cancer Foundation South Africa) - 2000
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