Children's home hospice care charity highlights National Grief Awareness Week

The Jessie May charity has spoken about its work ahead of National Grief Awareness Week which runs from 2-8 December.

The organisation offers hospice care and support for children and their loves ones and works in Swindon and across the region.

National Grief Awareness Week aims to help anyone who has been bereaved to access support in dealing with the emotional pain they’re experiencing.  

It says that many people can relate to the complex pain of losing a loved one, but for parents who have lost a child, grief brings its own special feelings of isolation and bewilderment.

Around a third of such parents report feeling alone, since others who share their experience are fewer, and systems of social support can be inadequate. The Bereavement Commission says that insufficient support can slow the grieving process and recovery of bereaved parents.

The loved ones Jessie May works with include Roz and Adam, parents of Alba, who died at just two years old. They have developed their own way of coping with their grief, alongside the support they’ve received from the charity.

Roz said: "There’s no right or wrong way to grieve but there are a few things that have helped us. Accept help when it’s offered.  

"We were always hesitant, but when we did it was always positive.  Reach out to others in similar situations, and don’t be afraid to talk about your child. Keeping Alba’s memory alive helps us cope.”

Sharing Alba’s story has been a crucial part of Roz’s healing. “We talk about her all the time. Even when the kids are in bed, Adam and I will sit and look through photos or talk about her. It’s comforting for people to know about her.”

She also encourages parents to allow themselves to feel whatever emotions come. "I’ve broken down in all kinds of places, mostly the car. For some people, it’s the shower, but for me, it’s the car. And that’s okay."

Roz and Adam always knew that Alba’s life would be short.  She was born with a congenital disorder of glycosylation type 1d. Their journey, marked by hospital visits and medical challenges, brought them to Jessie May.

Jessie May’s bereavement lead, Michelle Green, said: “We know that loss can start even before diagnosis; when parents realise that maybe something ‘is not right’ with their child and it continues all through their child’s life and after their death. 

"This is why our bereavement support service is available for parents when their child is accepted onto our caseload.  Our aim is to ensure parents feel less isolated by offering compassionate support, a listening ear, and a community of others who understand their experience.” 

Roz said: "From the moment we connected with the nurses at Jessie May, everything felt a little easier. While Alba was alive, they not only provided medical care but also emotional comfort, and this support continued after Alba died.”

Jessie May runs a ‘Purple Group’ attended by Roz and Adam, at which a community of bereaved parents meet to offer mutual support and understanding. 

“It’s strange to be part of something that no one would ever want to sign up to, but knowing you’re with people who understand - that’s been a huge help,” said Roz.

For her, the meetings have been a space to share Alba’s story, to talk openly about her, to have a cry, and to know that Alba is remembered not just by her family, but by a community of people who can relate. 

“I’d be lost without it now,” she added. 

Roz and Adam have developed their own meaningful rituals to remember Alba throughout the year. On her birthday, they light the garden green, Alba’s favorite colour. On the anniversary of her funeral, they play the songs from that day and on the anniversary of her death, they read the notes left by loved ones that they keep in a special jar. Every time they visit the beach, the family writes her name in the sand.

Roz hopes that sharing her experience can help other parents navigate their own. “Alba may be gone, but her memory is a bright light that continues to shine, nurtured by the support of Jessie May and the love of a family that will never forget her."

For more information on how to cope with grief after losing a child, or to learn more about Jessie May’s services, people can visit https://jessiemay.org.uk/supporting-you/bereavement-support/