An open letter from a family devastated by their child’s diagnosis of a life-shortening condition

To all the families who’ve been told the news they never wanted to hear, from a mum who knows what you’re going through.

Shalome and mum
When we excitedly went for our 20-week scan, the last thing we expected to hear was that our baby girl had severe brain abnormalities and might not survive her own birth. When you get that kind of news, you have no idea where to turn.

It was only while leaving one of our many hospital appointments that a nurse suggested we contact Forget Me Not Children’s Hospice. You don’t ever imagine anyone will say the words ‘children’s hospice’ to you, and it felt so final and depressing. Before we even had chance to contact the hospice, they called us and so we arranged to visit.

We had no idea what to expect and we were more than a little frightened – but when my husband I walked through those front doors, we weren’t greeted by sickness and ‘the end’. Instead, we were embraced by a celebration of life, and we were offered unending hope. And by embraced, I mean our whole family! It wasn’t just about this precious bundle we were expecting, it was about all of us.

Forget Me Not very soon became our go-to place of safety and comfort. Before our due date, my husband and I enjoyed complimentary therapies and our eldest child, Faith, loved playing in the sensory rooms, the hydrotherapy pool and the music therapy room. In one session, we recorded our unborn daughter’s heartbeat and used it as the backbeat to a very special lullaby. This is a treasured keepsake I will always hold close to my heart.

We were offered tailor-made counselling and our many, many hospital appointments were hosted or supported by the hospice. The whole team was absolutely fantastic and always made us feel at home. They gave us hope and put a much-needed spring back in our step.

We knew the diagnosis was not good, but whatever the outcome of Shalome’s birth, we knew we wanted to be transferred from the hospital to the hospice as soon as possible. Amazingly, she did survive, and Forget Me Not immediately took care of my whole family. We recovered while staying in their lovely on-site accommodation, and we were cooked for every day so we didn’t have to think about anything other than being together.

We spent a full week there, being looked after and making memories we knew we might need sooner than we could ever be ready for. We took Shalome’s footprints in clay and paint, we invited our extended family to a celebration organised by the hospice team and we spent some incredibly precious time together. With the help of their specialist staff, we learned the intricacies of our daughter’s needs and I was so grateful for that practical support in a minefield of medication and equipment.

Now, aged almost two, Shalome has defied all the odds and is a constant source of delight. She requires 24/7 care which is challenging and exhausting, but thankfully we’re not doing this alone. Forget Me Not offers weekly respite for our daughter, plus overnight stays, and the whole family has access to all of the amazing events and facilities there. Ironically, our lives are now so much richer!

We know our baby is heaven-bound, but with Forget Me Not we’ve been able to make memories to last more than a lifetime. The children’s hospice is our oasis, and our second home and I don’t know how we would have survived without them.
I’m writing this letter to any family out there who, like us, have had their world turned upside down by the worst news possible. I urge you to not to miss out on the life-changing experience that Forget Me Not offers – isn’t it time for some good news?