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Charlotte’s story: A journey of hospice care through photos

One step forward two steps back
One step forward two steps back, by Charlotte

Dispelling myths and misconceptions about children’s hospice care has always been a big part of Children’s Hospice Week. It’s our responsibility to show how supportive and warm these services are, so that families feel confident to approach them if they ever need help.

This year, a group of Mums from East Anglia’s Children’s Hospices (EACH) have teamed up to tell their stories as part of “The H Word” – a participatory photography project run by the hospice’s brilliant Family Communications Co-ordinator. The project has given Mums like Charlotte a platform to talk about their experiences and challenge misconceptions in the community. In this piece, Charlotte tells us about her journey with EACH and guides us through the photographs she’s chosen to exhibit at the project’s event in Ipswich, showing at The Whistler Gallery until 27th June 2019.

Our journey with EACH started at a time when our world had been turned upside down. We were in turmoil.

Whirlwind Tornado
Whirlwind tornado, by Charlotte

We were on a journey we never expected to be on.

Excitedly expecting our second child we had been given the devastating news at our 20 week scan that our baby had a condition called Trisomy 18 and was “incompatible with life”.

Devastated and with nowhere to turn we were advised that we could access EACH services when our baby was born.

In the beginning
In the beginning, by Charlotte

EACH – what does that mean? What can we expect? Surely the children’s hospice would be a really sad dark place. It’s the place where sick children go to die. Why am I having to go there? This is not what I wanted for my child.

How wrong could we be? When we went to look around the Treehouse it was a totally different experience to what we expected.

We were made to feel that our son Elliot mattered, his life mattered, he was important, they would care for us and him.

Our initial perception of what EACH was from the outside was so wrong.

Our initial perception of what EACH was from the outside was so wrong.

Things aren't always as they seem
Things aren't always as they seem, by Charlotte

The Treehouse was bright, colourful and happy. We were able to start to make plans and make sense of our journey.

We took our older son Louis back to the Treehouse after school so he could have a look around and see how he felt about going there to stay with Elliot after he was born.

Louis immediately felt safe inside, he loved the gardens and this has always remained a place of sanctuary for him.

The Secret Garden
The Secret Garden, by Charlotte

This photo depicts peace, tranquillity, hope and safety.

Elliot was born on 8th June 2012 at Ipswich Hospital. EACH were on hand to assist in getting us home. Within 4 hours of Elliot’s birth we were on our way home. One of the Symptom Management Nurses from EACH drove Elliot and me home and stayed with us a few hours before leaving us alone to be a family of four.

Sadly the following morning after 17 hours and 5 minutes our amazing little man passed away in his Daddy’s arms.

Empty Chairs at Empty Tables
Empty Chairs at Empty Tables, by Charlotte

This photo has many layers. These chairs were in the gardens at the Treehouse, they depict the emptiness of loss, the leaves creating the mess that this turns everything in your life into. However, if you look beneath the emptiness and the mess you can see that there is colour, somewhere to rest and this gives us hope for the future.

This leads onto how EACH helped us to look at things differently.

When Elliot died we were able to go to the Treehouse with him and stay in the End of Life Suite. This helped us as a family on so many levels. It enabled us to be cared for, get to know Elliot, bath him, make memories and prepare ourselves and him for our final goodbyes.

E in a Tree
E in a Tree, by Charlotte

After Elliot died we looked for signs that gave us hope and made us feel like Elliot was watching over us. The number of places I have found E’s without even looking for them they just seem to jump out at you.

What might seem like the end was just the beginning of our journey with EACH.  We were able to access counselling both one to one and as a couple as part of a unique baby bereavement group.

Comfort, by Charlotte Markham

Many of my one to one sessions took place in this room and I see this chair as a haven of safety. It was in this chair I told my news that I was by some miracle pregnant again with our third child. EACH supported me through this very scary and exciting time full of mixed emotions.

What might seem like the end was just the beginning of our journey with EACH. 

Ray of Sunshine
Ray of Sunshine, by Charlotte

Our son Louis was also struggling with his emotions, he was angry and unable to express himself. Again EACH were on hand to assist. We met Ray Travasso the music therapist at the Treehouse who worked with Louis. Working with Ray helped Louis make sense of things and enabled him to find ways to bring a ray of sunshine back into his life.

Music is my Lifeline
Music is my Lifeline, by Charlotte

Louis wrote his own songs and recorded them with Ray to express his emotions.

One step forward two steps back
One step forward two steps back, by Charlotte

The journey that we are on isn’t easy and often feels like you take one step forward and two steps back. However, with EACH by our side we are able to look to the future.

Look to the Future
Look to the Future, by Charlotte

To find out more about the project from the perspective of Rachel Wright, EACH’s Family Communications Co-ordinator, click here.

Family stories