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

36 replies

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.

OP posts:
ThornerDi · 21/03/2014 05:30

BumPotato thank you for asking how you can help. I'm one of the Trustees for Elliot's Footprint. You can donate via the charity web page. There is a link in the blog. www.elliotsfootprint.org. Thanks

sprite25 · 21/03/2014 08:23

I'm so sorry to all those who have lost children, I've never experienced it but know someone who has and I have a young baby myself and wouldn't even want to try and imagine the devastation of losing her. What your doing is great and I'm sure your little boy would be very proud of you.

bohoec · 21/03/2014 10:18

I'm so sorry for your loss. What an amazing thing you're doing, I really hope Elliot's Footprint makes an impact and helps other families through bereavement.

Stockhausen · 21/03/2014 12:12

I'm so sorry for your loss, and everyone sharing your story here.

I'm not feeling strong enough to read through it all just now but will be back.

kimmacleod · 21/03/2014 12:51

I am so sorry for your loss of your lovely son Elliot. My son Calum died suddenly from meningitis aged 12 in 2007 and our world crashed. Help and support is so patchy. I knew a lot about mental health and how to improve wellbeing through the work that I do. It really helped me to cope with life and find a positive way out of the grief for our family.
I was determined we would not become one of the negative statistics that are linked to child death.
It took some time and I had to use every thing that I knew, we had help from Meningitis Now and Winston's Wish charity too. Finding positive ways to focus were so important for us. To find a way to honour Calum's memory by living our lives well.

I know that I am lucky, I have experienced great kindness from others. I have been able to channel my energies into positive things, never denying the hurt and loss that exist but knitting a cover for the hole in my hear by the actions that I have taken.

I have been running Happiness Clubs for 3 years, teaching ways for people to bounce back from difficult times and bring happiness back into their lives.
Last year I wrote a book called From Heartbreak to Happiness geared at helping parents (and others) to find a way through their loss and rebuild happiness back into their lives. I share the difficulties I faced and what I did to overcome each stage. More info can be found on www.stressthepositive.co.uk.

I commend you in your efforts and wish you every success with Elliot's Footprint. I am sure that your son would be very proud of you. I wish you and your family good health, peace, comfort and happiness. Kim xxxx

Guest post: 'When my little boy died, I was given a leaflet. Where is the support for bereaved parents?'
shabbs · 21/03/2014 13:23

Sadly I belong to 'this club.' Lost one of my twin sons (7 months old)32 years ago (heart defects) and my then 7 year old DS3 was knocked down and killed by a reversing lorry 22 years ago. I floundered around not knowing who to talk to and really struggling. I joined Compassionate Friends. They were a great help to me.

Also, about 8 years ago (I think!!) several MN bereaved Mums set up and on-going thread for anyone touched by the death of a child (of any age). Thats where I have had most support from.

I am so sorry for the loss of your precious child......someone once told me there is no death so sad as that of a child.......and they are totally right. xxxxx

persimmon · 21/03/2014 13:33

My eyes filled with tears looking at your beautiful little son. I'm so sorry for your dreadful loss, and for the pain of other posters who have lost their children. Immense kudos for setting up Elliot's Footprint.

Paintyfingers · 21/03/2014 19:56

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N0rt0nmum · 21/03/2014 21:36

Hi it must have been so hard to write your story. Alder Hey have a fantastic Bereavement Care team who are on call to attend to the family when a child dies, day or night. They offer support, the family are able to return to the hospital to spend time with their child & a team member will take them to Register the death.
The family then have the support of The Alder Centre & Child death helpline. The Alder Centre is for anyone affected by the death of any child, unborn to adult.
Here is the info theuncheshirewife.wordpress.com/2013/03/28/support-after-the-loss-of-a-child/
If you would like information for your charity I am sure they would help you.

debrajwarren · 22/03/2014 21:59

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SheKnewSheWasRight · 25/03/2014 10:05

Wishing you the very best of luck with Elliot's Footprint; have donated via your website.

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