Claire Gray is a speech and language therapy assistant working with children with special needs. She lives in Newtownards, Co Down, with husband Kris and their two-and-a-half-year-old son. She is also mum to Matilda who was born in 2013 with a serious genetic condition and died just three months later. As part of Palliative Care Week 2017, which runs from 03-09 September, Claire talks about her daughter’s tragically short, yet immensely full life.
Matilda received palliative care (for those with serious progressive illnesses or terminal illnesses and their families) from when she was five days old. It was on a Thursday afternoon that the consultant said: “Your little girl has a very serious condition. It’s called Edwards Syndrome, Trisomy 18.”
My husband and I immediately began to cry. I’d never heard of Edwards Syndrome or Trisomy 18 before even though I work with little ones with special needs and would be familiar with various conditions.
Kris and I were later told about a service called Hospice At Home, where nurses could visit and give us some respite. We had no idea how often that would be or for how long, but it was calming and gave us the confidence that, if we needed help, we knew who to call.
Matilda came home on her two-week birthday. Walking through the front door with our baby who was alive felt like we had all climbed Everest. It is a moment I will treasure for ever.
When Matilda was well enough we took her on adventures to the duck pond, the seaside and where we were married. All we wanted was for her to have the chance of ‘normal’ experiences within her life.
Generally, I cuddled and watched Matilda all day, and Kris cuddled and watched Matilda all night, with only some family time together in the late afternoon.
When the Hospice At Home nurses came, from 10pm until 7am, Kris and I could go to sleep together and get up together. This enabled us to take Matilda on adventures and make wonderful memories together.
Matilda was a bit of a night owl. While we slept, she was busy having more experiences with her hospice nurses, who read her stories, sang nursery rhymes and even helped her to make gorgeous art.
Every room in our house has a butterfly, tutu, tractor or ladybird painted by Matilda’s fair feet! On the back is a sticker saying ‘Made by Matilda’, with the date, and I always wrote what age she was too.
Again, that’s something so ‘normal’ – children bringing home paintings from nursery - and we’re not going to have that. But walking downstairs and being greeted by Matilda and her artwork gave us such a special, proud moment of what our daughter had made.
It gave us ideas to copy and it means so much to us to have something physical that Matilda made.
We always sponsor the children’s hospice and write on it: ‘This is in memory of Matilda Margaret Ruth Gray to thank you all so much for making her life more lovely.’
Because that’s what they did - they made her life more lovely.
Claire has a Facebook group called Matilda’s Marvellous Memories, where she writes of Matilda’s adventures, despite her Trisomy 18, and how it feels now that Matilda is no longer here. Visit http://bit.ly/2vM9ZNj
Claire is also a member of the Forget-Me-Not Bereaved Parent Liaison Group in South Eastern HSC Trust. For more information visit http://bit.ly/2wqqwIR
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