Anything for my child - book cover reveal

It's Daisy's birthday today.  She would have been 17, she will be forever 12.  Next year it will be five long years since I kissed her goodbye.  This time of year is always tough.  Remembering her birthday, the moment my life, our family's lives, changed forever.

This year is extra hard however.  I have Covid.  Despite a booster vaccine in October I still succumbed and it knocked me off my feet.  I have to self-isolate until the 28th.  Like many people all over the world, Christmas is going to be a tough one.  For me however, the timing could not have been worse.

My youngest son also tested positive, although his release date is Christmas eve.  But in order to prevent it spreading to my eldest daughter I'm spending my days locked away in my office where I've de-camped to see out my isolation time.  Any other time of the year this would be manageable but to be alone in one room over the festive period brings back a lot of painful feelings.  That first Christmas, just a couple of days after Daisy's arrival we were forced to be apart as a family.  Daisy in her incubator in the neonatal unit, I was still recovering from a really difficult pregnancy and delivery stuck in a hospital cubicle.  There were no smart phones in those days,  no face-timing my other children to see them open their presents on Christmas morning.  It's why Christmas is so important to me, I always felt I needed to make up for that first Christmas when we weren't together.  That the location didn't matter, just being together was the thing that mattered.

And of course there are many anniversaries around this time.  Last week marked six years since Andy died. That first Christmas without him was tough and we hadn't even had his funeral at that stage.   Little did we know that the following year would be Daisy's last Christmas...and so it goes on.  

So I'm drawing on a lot of reserves to keep putting one foot in front of the other this year.   Trying to make the best of it.  Being stuck in one room, with no chance to go out for a run or just meet up with friends, that's tough. I know I have had years of practice at getting through this sort of thing, but it can still be triggering. Having to go back to that place.

So that's where I am now, counting the days.  Just like we used to count the days down to Daisy's discharge date and freedom.

However, in other news I wanted to share the reason why this blog has been so quiet this year.  All of my creative energy and spare time has been focused on writing my third book.  Anything for my child will be published next year by Oxford University Press.  Coming in at 95,000 words it's the hardest project I've taken on. I know it's an over-used phrase these days, but it's been an emotional rollercoaster as well as a huge learning journey.

The book takes a deep dive into the world of parents caring for medically complex children.  Exploring their feelings when they find themselves in this situation, whether as a result of an acquired or congenital condition.  It looks at the decisions they have to make and the influences on those decisions.

I've used Daisy's story as the main arc  and supported this with  interviews with other parents, siblings and professionals who have been involved in caring for children with similarly complex needs. I've reflected on the interplay of factors that affect decision making including questions of medical ethics, appropriate interventions, mediation, faith and social media.  And in discussing some recent high-profile cases I've tried to explore how trust and communication can break down between parents and clinicians and what can be done to prevent this happening.

Ultimately the book is a really emotional journey through the life of a child with medical complexity.  How parents have to become both carers and advocates in order to be able to  navigate a complex system and make what they consider are the best decisions for their child.  It's about human beings, on both sides of the hospital bed, trying to do the right thing in a flawed and complicated system.

I had the most incredible conversations with a really wide range of people, I read countless journal papers and court transcripts and found myself exploring tangents and areas that I hadn't anticipated when I first set out to write the book.  And that was the point.  While Daisy's own story and my personal lived experience of the life (and death) of my medically complex child is the basis of the book, I did not want it to be just about my subjective experience.  I hope I've done justice to the stories that I was told.  Lived experiences from many sides and perspectives.

So that's why this blog has been so sadly neglected this year. The sheer effort of researching and writing the book, let alone all the admin that then goes with getting it edited and  ready to go into production, on top of work and family life, left very little in the tank for anything else.

It is, of course, dedicated to Daisy and on her birthday I thought I'd share the cover with you.  There's a story behind this cover too, nothing I every do comes without some sort of back story.

Before Covid times I was asked to speak at an auction at Christies on behalf of Wellchild, a charity that supports families caring for children with complex needs.  One of Daisy's palliative nurses was a Wellchild nurse so I was obviously delighted to be able to share my own lived experience and help their fundraising. Famous artists had donated works to be auctioned that evening and as I stood up to speak I saw the artwork by Patrick Hughes on the wall to my left.  

That picture of the hospital bed with the rainbow escaping through the window just seemed like such a powerful metaphor of life with Daisy.  At that point I hadn't even been commissioned to write the book but I mentally filed the image in my mind as one that I'd love for a book cover. When my editor at OUP began to talk about cover artwork I decided to take a chance and contact the artist, explaining a bit about what his picture meant.  I was flabbergasted when he responded almost immediately saying he'd be delighted to let me use his piece, Rainbow Bed, for the cover of the book.

So here it is, isn't it wonderful?

Like everything in life, Covid has delayed publication but we hope that the book will be available late June next year.  I'll share pre-order links as soon as they are available.

I'm hoping that the Anything for my child will help a wide audience or readers understand the realities of life caring 24/7 for a child who has complex medical needs. A child who is likely to die young.  It's aimed at many people; health professionals, social care professionals, parents, in fact anyone who is interested in understanding a little more about what it's like to be propelled into an unexpected parenting journey.  I can't promise it's an easy read, even the toughest ethics professors who reviewed the manuscript confessed to shedding a few tears.  But that's the reality of our lives and it's important that we are not left in the shadows because our stories are too painful to share.

So happy birthday Daisy.  I won't be able to go to the chapel at Great Ormond Street this year with a birthday card .  But I'm grateful to the wonderful chaplaincy team there who will light a candle in her memory today, her light still burns so brightly.

And me - I'll get through this Covid isolation , yes Christmas will be tough on my own, but I've been through worse.

I'll try and be better at updating this blog now, there's 13 years worth of posts here already, and many more to be shared in future years.