Lucy – Alveolar Rhabdomyosarcoma (Part 4 – Lucy Remembered)

Today, is part 4, the final part of Lucy’s story, as told to us, by her mum, Michelle. If you have been following this story over the past few days, then you will have read an in-depth account of a mother’s love, commitment and heartache for her brave daughter, Lucy. Sadly, not all child cancer stories end in the way that we would hope.

I’m sure this story has affected a great many people; not only from parents, or carers, of children with cancer, but many others too. Sadly, it is a story that will be repeated today, and tomorrow, and the next day. If you are affected by this story, or any of the stories or posts that we publish, please do seek professional support.

We are very grateful to Michelle for allowing us to share Lucy’s story in this way.

Best wishes to you all.

Ziggy Zoo and Betty Too
Xx

Lucy passed away peacefully with her family next to her, at our local hospice, on the 15th August 2014. She was so small, like a tiny little doll in the hospital bed. So frail, it had taken everything from her in those awful four years since diagnosis. She was free though, and in my muddled old brain, she could now do whatever she wanted to. We’ve had ribbons printed in her favourite yellow, and people have taken them on their holidays. So far, there are ribbons in 40 different countries. ‘The Judith Chalmers of the spirit world’, I joked the other day. It was just something, anything, to keep her memory alive.

Life hasn’t been the same since she had to go. It’s hard, trying to find a new normal. We are a broken family, but somehow we keep going. My other three children are so damaged, and so sad. This has totally ruined their childhoods; their lives all changed. It breaks my heart. They have dreadful sibling guilt, and although we encourage them to do everything they want in life, it is so hard for them. Slowly, they are finding their feet again, and we couldn’t be prouder. My poor hubby has also lost his lovely mum to cancer since Lucy died, and his dad was diagnosed only four months later. I don’t think it’s hit him yet. He’s very protective, very caring, and on his bad days, I hope I am the very same for him.

I’ve suffered ill health ever since, with various different problems, mainly down to anxiety. Some people don’t know, some don’t understand, but the world frightens me now. I feel I’m still on amber alert, waiting for the next disaster. I want to feel happy, but too frightened to dare to. Or is that guilt too? I’ve gone from a, ‘tenacious force to be reckoned with’, as one doctor called me, to being frightened to go out alone. My gp has been very supportive, and I’m getting help for the mental scars left behind. It frustrates and infuriates me being so weak. Being strong for too long, over four years, has taken its toll I suppose. I didn’t deal with it during Lucy’s illness. It hit me afterwards, and I don’t discuss it with many. I’m quite private really on the awful days. I, maybe, should ring a friend up and shout for help, but I haven’t. It’s not just your child you watch facing and going through this nightmare. I’ve lost count of the teenagers I’ve watched lose their hair, their limbs and their lives too. It messes your head up, a lot. My husband, family and good friends have been amazing, very patient, and just get it.

Lucy will be missed forever. There’s no moving on, and some days, I don’t really know how to live the rest of my life with this pain. This grief is just love, I’ve accepted that. I felt very rushed, and a failure at first that I wasn’t ‘back to normal’. Now, I have come to understand such grief is part of, and remains with me. It’s part of us, part of our family. Lucy is still such an inspiration to us. We miss her humour, her kindness and her laughter. Everything. One in a million, loved to the moon and back, I used to say to her. I try my best not to dwell on the sadness, the illness, or the things cancer has taken, but to try to focus on how blessed we were to have such a wonderful girl for 20 years. It’s not easy though, but I hope she knows how much she’s loved and how proud we all are.

Our beautiful girl, Lucy.

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