When baby is terminally ill child

It’s a devastating blow that leaves parents confused, frightened and at times depressed.

JOHN MUTURI shares the coping mechanisms

Caring for a chronically ill child is challenging and demanding. The knowledge that this illness is not like a cold that will eventually go away is what scares most parents. Even though physical disability is not classified as a chronic illness, a child who can’t use her limbs requires similar care like a child with chronic illness.

It’s a devastating blow that leaves parents confused, frightened and numb followed by sadness and depression. Chronic illnesses include cancer, diabetes, epilepsy, sickle cell anaemia and severe eczema among others.

It’s normal to react this way and every affected mother goes through theses stages.

Thus don’t feel that your reaction is strange, nor feel guilty. It’s comforting to know that these feelings fade once you get over the shock.

It’s important, however, to have the right knowledge that will help you to care for your chronically ill child as well as give her encouragement.

It will change your life

A chronic illness or handicap in the family calls for major changes in the situation at home to accommodate the needs of the special child. These children are doubtful, uncertain and feel isolated hence it’s common for the family to come together and shut out others who may harm the child.

The relationship between the two parents may become strained as each tries to cope with the situation on their own. This reaction is what brings about marital problems, because without open and honest communication, you cannot offer each other sufficient or appropriate care and support.

All these feelings may occur even though you love your child and continue to try to give her the best.

Therefore, whatever adjustments take place, it is important that close family ties are maintained. Children also get affected when their sibling has a chronic illness. It’s easy for parents to make them feel left out and less loved. This breeds resentment, jealousy and even hatred towards the child with special needs.

It is, therefore, important for parents to remain sensitive to the needs of their other children too. Give them a fair share of time by bonding with them too. It also helps to explain to them how serious their sibling’s condition is. They should be encouraged to help take care of their sibling so that they can better understand why she needs more attention.

Irrespective of the problems you go through, whether physical exhaustion or emotional strain, there are positive aspects to caring for a chronically sick or handicapped child.

For instance, many families find that they are drawn even closer as they share the responsibility of taking care of the sick or disabled child.

Don’t be over-protective

Though the chronically ill or handicapped child needs much help, don’t be overprotective, smothering or over concerned about them. Doing so will give them the feeling that they are helpless and is also bound to make them unreasonably demanding or fussy.

Over protectiveness may be caused by your inability to accept that it is normal to feel angry and resentful at times towards your child while still loving and caring for her. Give her your love and time and try not to feel guilty since this can make you over-compensate for any angry feelings you may have.

One of the best things you can impart the child is the ability to care for herself. Also don’t give her the impression that she is a burden. One way to reassure her on this is by taking care of yourself.

Unless you demonstrate that you can look after yourself and accept help from others, your child will be left with a huge burden of guilt since she will feel responsible for making you look worn out and unhappy.

To occasionally have some time for yourself, ask your family, friends and neighbours to help out. It will help restore your emotional and physical energy, and most importantly, you will feel loved.