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Guest post: 'When my little boy died, I was given a leaflet. Where is the support for bereaved parents?'

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MumsnetGuestPosts · 20/03/2014 14:01

When I put Elliot down for an afternoon sleep on Sunday 3rd March and whispered the words "I love you EJ" in his ear, I never imagined they would be the last he would ever hear - that my little boy of just two-and-a-half years would never wake up. More than a year on, I still don’t know why Elliot died and I'm still chasing for a cause of death and an inquest.

When we received the worst news a parent can hear – 'your child is dead' – and sheer devastation shook my family, I, perhaps naively, thought that there would be support services available and ready to help. I assumed that the schools would know exactly how to support Elliot's brother and sister. But I have been incredibly disappointed, and my grief has been compounded by the lack of adequate bereavement support services and the lack of compassion and care within the systems and processes I have found myself in.

That Sunday began as a perfectly normal day, hectic and full of family life. We watched Elliot’s older brother, then eleven, play football and then frantically tidied up after his older sister Emily’s fifteenth birthday sleepover the night before. As usual Elliot was at the centre of the action, loving the attention from Emily’s friends and having a great time running around on the touchline.

But in the space of one hour I went from being a mum in a 'normal' family, to complete devastation. My world stopped - everything carried on around me but I was in a bubble. One minute I was snuggling my little boy in for an afternoon nap, the next I'm explaining to his brother and sister that Elliot isn't coming home. I went from making plans for his third birthday to having to plan his funeral.

I left hospital with a generic leaflet in my hand, totally desolate and with an immense feeling of isolation and fear. Everyone I came across thought someone else picked up bereavement support, but in reality no one did. The waiting list for bereavement support where I live is anything up to 12 months.

I turned to the internet to find support and information, but instead found sites which told me our children were more likely to be bullied at school, that we were likely to get divorced and that our friends would drift away as they wouldn't know how to cope with our grief. When you're at your most vulnerable, and can't think straight or process information these are the last things you should have to read.

That’s why we have set up Elliot's Footprint. It’s still in its infancy, but we want it to be a gateway for other families to access information that can offer some help and hope. Every family who faces loss will have different needs, and I don't for one moment presume that I know what will ease someone else's pain, but I want to help fund and develop personalised bereavement support. For some parents counselling may help, for others it may be a chance to meet other families who have experienced the same trauma. It might be about finding connections for your children so that they can speak to other children who have experienced the loss of a sibling, and making sure that nurseries and schools are geared up to support them.

Since losing Elliot I have met many people from various professions in connection with his death, and we've been grateful for their sympathy, compassion and care. But, this care and compassion simply doesn't extend into adequate, accessible bereavement support, a clear Coroners' process or even the many stakeholders in Elliot’s case actually talking to each other. It is these things that have made my anguish even more distressing, and exposed the need for improvements. Losing my special little boy so suddenly was devastating enough, but to then have to chase for every scrap of information to find out why he died is so hard and exhausting.

I know that I'm not alone in this and that there are many mums out there who have also experienced this loss - I'm trying to reach as many of them as possible to find out the true extent to which a lack of support is impacting on families’ lives. If you have a story, or know somebody who does, please do share it on the thread below, or get in touch.

We can never take away the pain and devastation caused by the loss of a child, but I hope that Elliot's Footprint will be able to offer a gateway to good advice and support that may make a small difference and help families to start taking the steps towards rebuilding their lives.

This will help me take the loving spirit of Elliot with me on the journey to start rebuilding the lives of my family.

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YouAreMyRain · 20/03/2014 14:50

I am so sorry for the loss of your beautiful little boy

Elliot's Footprint sounds amazing, what a wonderful organisation.