39 Hours and 32 minutes

That’s all we had.

Just 39 hours and 32 minutes.

I’m reading a book at the moment called The Year of Magical Thinking by Joan Didion. She says in it;

“Life changes fast.
Life changes in the instant.
You sit down to dinner and life as you know it ends.”

8 hours before Lexi died we first thought she might be unwell. 6 hours before Lexi died we arrived at the local hospital. 1 hour before Lexi died we arrived at Great Ormond Street. Just 12 short hours before Lexi died we had sat as a family of 5 reading bedtime books, cuddling our beautiful new addition and feeling completely happy.

How would we have spent those precious hours if we had known that life would change so quickly.
Why do we forget so easily the fragility of life? How precious each moment is? How each day is a gift?
Joan Didion talks about how when sudden traumatic events happen, when people are recounting the stories it always starts the same. The moments before were ordinary. No one briefs you as to what’s to come. We all focus on how unremarkable the circumstances were in which the unthinkable occurred. Enjoy the ordinary. Enjoy the unremarkable moments in life. No one knows when that might all change.

I had been waiting to write anything more since my last post till I had something positive to say. But I started writing to break the silence. And the reality is that there really hasn’t been anything positive to write of late.

So, in the absence of something positive coming to me and still stuck in the overwhelming dark cloud of the investigation and inquest I sought my own positives.

Back in February we returned to Great Ormond Street Hospital to meet with the consultant who had with his team done everything they could to save Lexi’s life. Meeting with the consultant showed us what a knowledgeable and genuinely lovely man had worked with his team to save Lexi’s life. By the time she arrived at Great Ormond Street she was so incredibly unwell she really did have such a small chance. In fact we were told as we left our local hospital that it was highly likely we would lose her on the journey. It wasn’t expected that she would even make it to Great Ormond Street Hospital. She proved everyone wrong and fought hard to make it to GOSH. And when we did arrive the team were all gathered waiting for her arrival. Surgeons were waiting to operate right there in the intensive care to place her on an ECMO machine. There are only 3 hospitals in the country that have ECMO machines. The machine takes over the function of the heart and lungs, allowing the body to rest while they try to treat the cause of illness. Heart-breakingly, Lexi was just never well enough for them to start that process. Nevertheless it showed me how amazing Great Ormond Street hospital is that in the early hours of a Sunday morning they had managed to have such amazingly skilled people all standing by waiting to save her life with the best equipment in the world.

We can only feel thankful to Great Ormond Street hospital. When the role of the doctors and nurses was no longer needed the family liaisons took over and carried us through the worst week of our lives. They have continued to support us long after helping us through a world we never knew before.

Fundraising and volunteering is something I have enjoyed and got so much out of in the past. I have over the years been a volunteer for NSPCC with Childline, I was a games maker for the London 2012 Olympics, I took part in the London Triathlon for Brain Tumour UK and most recently have been raising money for Kidney Research UK. So, when thinking of something positive I could do my immediate thoughts were to raise money for the amazing hospital that tried to save our baby and who helped us through the first weeks of devastation that followed.

The prospect of raising money for Great Ormond Street Hospital in Lexi’s memory seems quite fitting and it will give me the positive focus I so desperately need. I have spent the last month reading up and learning more about raising money in memory of a loved one. I have spoken with Great Ormond Street and they have helped me to setup The Lexi Mace Brighter Future Fund. This fund will allow us to centralise any fundraising efforts made in Lexi’s memory. All money raised will go to creating a Brighter Future for the many children and families who pass through Great Ormond Street Hospital.

Our little girl was with us for a moment but has created a lifetime of love. Her legacy we hope will be one of a brighter future for the sickest of children and their families in a time of need. A legacy of kindness and love. Friends and family coming together to raise money in memory of a beautiful little girl who we all wish could be with us still today.

39 hours and 32 minutes was all we had with Lexi. So I have set our target at £39,320. I’ve never been one to aim low so £3932 just didn’t seem enough. And if it takes us a life time to raise that money then so be it. But we will spend that time honouring our daughter, keeping her memory alive and helping to make a brighter future for ourselves and others.

If you are interested in reading more about The Lexi Mace Brighter Future Fund please see the link below. If you would like to set yourself a personal challenge or would like to raise money in Lexi’s memory we would be delighted to have you help.

The Lexi Mace Brighter Future Fund

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  • Reply Claire harrison May 1, 2018 at 10:47 pm

    We’d be honoured tomso somwthjnb in lexi’s Memory. Such a wonderfully positive thing for you to do in such a dark time it’s the least I could do!
    I was contemplating entering the London marathon ballot and I now know for certain I will!
    In memory of Lexi I will get a place! Xxxx

  • Reply Claire harrison May 1, 2018 at 10:47 pm

    To do something! Sorry for the error!

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