Living in a world without her is a pain I have to face. Please don’t expect me to get over it - all those statements are assumptions that grief has an ending, a finish line
Thinking about the parents of children over six months old, why should they not have the same protection in law as those that lose a baby under six months old? Upon losing a baby, the bereaved mother and father are entitled to full maternity and paternity leave. But if you were to lose an older child? Nothing. Surely this cannot be right.
I honestly cannot believe I am writing this and sending it out to be read by anyone who finds it, the thought kind of terrifies me; but, this is to help anyone that has been in an awful situation. I want my experiences to be an example to anyone facing something difficult, that one day it will be a distant memory and you can actually build from the things that try and put you down.
The morning of 5 May, 2013, started like any other morning. My husband, our four children and I were staying in our holiday home in North Cornwall for the bank holiday weekend and what a weekend it promised to be, the weather was glorious. After a morning of walking on the beach, sand castle making and splashing in the sea, we decided to go out on our speedboat, a RIB, and had a heavenly afternoon picnicking and driving up and down the stunning Camel estuary. It was the first time that we had been out on the boat all year and everyone was in a good mood, laughing and screaming as we rode the choppy waves. It was only when we were coming back into our mooring that disaster struck.
My heart is forever broken and it is this pain and the missing that makes me determined to fight hard for the cure for Rett Syndrome. To fight on that no other parent has to feel my loss.
I often look back to the day it all started for me, the day I decided I had to find a positive way to honour Jack's memory, I can honestly say if I hadn't started my petition just six months after his death, I have no idea what I would be doing.
Nearly seven years ago my beautiful daughter Olivia lost her battle to the devastating neurological condition Rett Syndrome. In the early hours of November 7, 2008, our world was torn apart. Nothing could have prepared us for the impact and pain we have had to face as a family.
They tell you you're going to go to hospital and they'll be able to sort you out there. They don't tell you that it's almost certain that your baby has passed away and that there will be nothing anyone can do.
We are very lucky to be surrounded by such a large network of wonderful people who support us fabulously - unfortunately not everyone is so lucky - but, even so, it is a very lonely time. People offer support, condolence, hugs.
It's hard to explain but I feel like a parent. I wake up every morning thinking of Beatrice. She is the last thing I think of before I go to sleep. I talk to her. I am proud of her. When she entered this world, my outlook on life changed forever; I became a different person. That's what happens when you become a parent...