Dealing with the grief of your child having Down's Syndrome or losing a child.
     
     
     
     
     

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Losing Your Child (Whatever age they are)

Every year thousands of families face the loss of a child, something which goes against the natural order of things. You grow up with the knowledge that one day your parents and grandparents will die, even your partner and siblings, but not your own child - it is something you cannot imagine and unsurprisingly it provokes intense devastating emotions.

Grief is a very personal thing and how you grieve is different for each individual. There is no wrong or right way to grieve, just where you are at the time. The most important thing is to be able to talk to those close to you, tell them how you feel and listen and understand if they are feeling differently. It may well be easier to talk to someone other than your partner who will be feeling their own grief and possibly unable to provide the support you need, this is fine as long as you both understand why someone else can help in this situation.

Grief can make you wander around without purpose or interest, caring little for your family's day to day needs and just ‘going through the motions'. You may have difficulty sleeping or experience very vivid dreams about your child when you do sleep. All of this adds to the feeling that things are out of control, that you are falling apart and that you are isolated and alone with the world going on as normal around you.

Mum's may appear to spend all their time crying, the least little thing causing them to breakdown. If the child is young they may not have completely come to terms with the feeling of failing as a mother because their baby was born with problems and the death of the child may reopen or add to these feelings. Logically they will know that it was nothing they did that caused the baby to have Down's Syndrome and heart defects, but the maternal instinct for a mother to protect her young may be telling them otherwise.

Dad's in particular may be tempted to put on a "brave face" as they feel it is their responsibility to be strong for the rest of the family. This is not the best way to deal with the pain of grief, and apart from the possible long term effects of ‘bottling things up' it can be misinterpreted as a lack of feeling, particularly by his partner, which may add to her feelings of isolation.

You will probably have a great yearning to be close to your child and may find it comforting to hold their clothes and toys. Depending on the circumstances you may also want to keep visiting the hospital where your child died because you feel close to them there, or some other place of significance in their life.

You may experience physical effects of grief such as sweaty palms, headaches and stomach pains, and it can be difficult to think clearly about things so this is not a good time to make major decisions about changes such as a new job or a house move. It is also not unusual to experience feeling fear, frustration and anger or to feel guilty and either blame yourself or other people for your child's death. For a long time you may wonder how different things might have been "if only" you had made different decisions and you may have many questions that you want answering. It may well be that some of these questions do not have answers and eventually you will come to accept that you will never know if things would have turned out differently and you will stop torturing yourself with "if onlys".

All members of the family will experience grief although it will differ depending on their age and understanding and you may find the older generation deal with it differently. Even very young children will experience a sense of loss and it is important to help them through the grieving process too. It is easiest if you explain as clearly as you can at a level they can understand that their sibling has died and give them the reasons so that they can be reassured that the same will not happen to them.

Friends and neighbours may well feel awkward and embarrassed around you, they may try to avoid you or minimise contact because they don't know what to say to you. When they do talk to you they will often say things which they think will be comforting but despite their good intentions you may find their words unhelpful and even hurtful. People may suggest that because your child had special needs and heart problems that your grief is somehow lessened, or because they were so young that you have lost less - these comments are very painful for you but try to remember that they were unlikely to have been said with any bad intention.

If you have other children comments may be made about how good it is you have them, or it may be suggested that you can always have another child. Again these comments are meant with the best of intentions but they fail to recognise the love you have for each of your children as individuals and the very special bond many parents have with their special needs child. Many people will tell you they know how you feel because they have lost a loved one too, but those who experienced both the loss of a child and other close family members will agree that the death of a child is very different.

For some considerable time you may have moments of overwhelming sadness, but if you work through your feelings as time passes you will be able to remember the happy times with your child. Anniversaries, birthdays, Christmas and other special reminders will probably cause these feelings to reoccur for a little sometime, but as time passes you will begin to look forward again. The pain will never completely disappear - in time you will probably be glad it doesn't as it shows you have not forgotten, you will however come to terms with your loss and find a way to move on with your life.

Many families find it helps to have some type of memorial for their child. The funeral may begin this process but celebrating birthdays and other special occasions including the anniversary of their death can be comforting. Other things that can help are having photos on display and retaining keepsakes such as a lock of hair, hand or footprints or a favourite toy.

The support of family, friends, support groups, your doctor or local church minister can be invaluable whilst you are going through the grieving process.

Never be afraid to contact someone to talk about how you are feeling, it may help. Down's Heart Group has bereaved parents who will be happy to talk with you.

Additional sources of information

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UK Charity No 1011413    www.dhg.org.uk    email: info@dhg.org.uk

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