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Guest Column: Reality of life with a sick child

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“Your Child has a brain tumour” — words that spread fear into the heart of every parent.

From that moment on, everyone connected with the child enters a world that you never knew existed or indeed wanted to exist. Life becomes a never ending circle of doctors, nurses, hospital wards, radiotherapy, chemotherapy, medication, feeding tubes and conversations about your child’s health and life.

Everyday is a worry, everyday you watch for small signs of improvement only to see each step forward followed by two steps backward.

You try to keep positive, and to smile, when inside your stomach aches with fear, your head wants to explode and you only really want to cry and scream.

Then there are other family members, other children that need you to be there for them and of course there is the small matter of employment. Many employers will help but sadly there are some that will not and tough, life changing decisions may have to be made.

For many the family income was taken for granted, the mortgage needs paying, bills are landing on the mat, the washing machine needs to be replaced, yet nothing seems important anymore apart from the life of your precious child. You seek help, but from where?

You expect that the hospital and the NHS machine will provide you with the help, assistance and support during this time, of course any equipment that you need will be provided and your friends and family will be with you every step of the way. For many this is not the case.

For many the hospital becomes a second home as you refuse to leave your child’s side. Family members who are there at the beginning slowly drift away as life continues as normal outside of the hospital and likewise friends that you relied on for support don’t visit as often.

Pressures are put on relationships and sadly many seemingly strong marriages and partnerships fall apart.

The other parents fast become your friends and strong bonds are formed as fears and the unthinkable is quietly talked about between you.

Charities provide and try to fill the gaps missing from provision and support, but they can only give limited help and cannot give the one thing you crave to hear, that it’s all been a huge mistake and you can go home and live the normal life you had planned only a few weeks before the devastating news that “your child has a brain tumour “

Life can be a very lonely and frightening experience for those who live this life and I speak from real experience after our son Ryan Lee, aged 14, was diagnosed in August 2009 with Glioblastoma Multiforme brain tumours (5 in total) tragically losing the battle 10 months later in our arms.

This is just a small insight into the life of parents who enter into this world; thankfully many will never be given the key. So try not to take life, health and family for granted and look after each other.

 

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