Vanessa Williams went through the agony every mother dreads. Her youngest child Gareth died at the age of six just months after being diagnosed with an untreatable brain tumour.
She and husband Nigel came through the searing pain of loss thanks to ever-supportive and understanding volunteers at Care For The Family. They are so grateful foro the bereavement counselling they received they are now helping other devastated families to find “their new normal” after the loss of their child.
Q. Do you find yourself imagining him grown up, or is he forever your little boy?
A. We will never know what sort of young man he would have become. My husband sometimes thinks of him as a sportsman but I’ve never been able to imagine him as older than 6½. I look forward to seeing him in heaven, though. I know I will recognise him immediately.
Q. Parents imagine they could never get over the death of their child. Some 15 years on, have you?
A. Watching our beloved child suffer and knowing he was going to die was quite simply merciless, miserable pain. The first few years of grief tears you apart internally. You become someone else just to survive. When you’re both grieving for the same person, you cannot be there for each other because you are both in pieces.
In the 15 years we’ve had to live without him, there have been many sad milestone events, but you can prepare yourself for those. Its the ‘trip wires’, those unexpected things that bring on deep stabs of pain. For me it is the sight of a little blonde boy in a bright red jacket coming out of school with his mummy.
Q. What helped get you through?
A. Faith. Friends. Each other. Our daughter. And Care for the Family. It was 18 months after Gareth died before we found out about the charity, which has supported over 25,000 people since it launched in 1988. It helps step-families and lone parents as well as running a Bereaved Parents’ Support service. A friend booked us onto one of its weekends. It was a crucial turning point. We realised we were understood and given permission to grieve as we needed and we were given tools to help us find our new normal. I wish we had found out about it earlier.
Q. You now work as befrienders for other bereaved families. Why?
A. We dearly wanted to see a positive result from ‘the worst loss a parent can face’ and reach out to other hurting families. Care for the Family (www.careforthefamily.org.uk/bps, tel: 029 2081 0800) is such a valuable service. One bereaved father described it as “a safe place to share my pain and find hope that I could survive.”
Q. You first became aware something was wrong with Gareth on a trip to EuroDisney. Had he been a well child until then?
A. Mostly. He had been having a few headaches before the holiday and the annual school eye test had revealed an unknown problem. A hospital appointment was postponed until after our holiday. We’re glad of that as it would have meant living with the diagnosis for even longer.
But he found he couldn’t tolerate some of the rides at EuroDisney. Then he fell off his bike when his eye muscle suddenly gave up. When we got back he was given a CT scan, eye, neuro and co-ordination tests at Sheffield Children’s Hospital. Then I was told my beautiful, intelligent, blond, blue-eyed five-year-old had a brain tumour and would most likely die at any time. There was a five per cent chance he would survive up to two years, but their experience showed it would most likely be in the next six months.
Q. How did you react?
A. In a sort of numb, surreal daze I asked for the chaplain. When he arrived I remember falling to my knees. I had to give my husband Nigel the news when he arrived at hospital (which is one of the hardest things I’ve ever had to do). But the worst thing was going back to the ward to Gareth and looking at him ,knowing he was going to die. I wanted to shout and scream and howl but had to hold it together.
Every day after, I dreaded that split moment after waking when reality sank like a lead stone in my heart and belly.
Q. How did Gareth cope?
A. Gareth was given steroids and radiotherapy to try to slow the tumour’s growth and he showed incredible courage and humour throughout. The only thing he complained about was his chubby cheeks. Our skinny, elf-like boy became heavy and slow; his body just wouldn’t work properly, he lost clumps of hair and had to wear specs with one frosted lens.
Q. Did you fight against the diagnosis? We read so often about parents scouring the globe for a potential cure...
A. We had second opinions from two hospitals. But when we saw the results of Gareth’s MRI scan we realised the extent of the tumour and its position in the brain stem. We were advised that chemotherapy was very unlikely to give our lovely boy any extra time so we decided against it. We know our early acceptance made the last seven months of his life easier. Had the diagnosis been less definite we may have been tempted to search for alternative treatments at a huge cost to the whole family emotionally.
Q. When he died, were you with him?
A. Yes. He died at home not long before midnight seven months after his diagnosis. It was three days before Jess’s 12th birthday The house had seemed full all evening but at the very end it was just us and Jess, his Dorset auntie and cousins.
Q. How did it affect your family?
A. I think daughter Jess had a really raw deal. She had a very poorly brother getting all the attention and all the time she was coping with the onset of teenage-hood. After Gareth died we tried very hard to keep things normal for her, but grief is so debilitating that I think we were probably pretty useless. Thankfully none of us can really remember the detail of that first year.
We were never the same family again, We all missed seeing our beautiful boy grow up. Our friendships suffered, too. Family and friends just want you to be happy again - back to normal - but there is no normal to go back to. That has gone forever.
A few weeks after the funeral somehow everyone expects you to get on with life. The reality is you’re a combination of numb, angry desperately sad and completely lost.
Q. Does time heal?
A. Another bereaved parent said that “time itself does not heal, it just allows the space to learn how to cope.” That has been our experience. But we feel enriched by the experiences we have been through as a result of our son’s death, and by the people on the same journey.