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.

My speech at the Houses of Parliament (for Together for Short Lives)

I'm so busy at the moment, it's crazy!  Juggling the demands of my day job three days a week with freelance commitments and campaigning on behalf of families like ours.  Families who are caring for the sickest children in the UK and those who are grieving the loss of their child...

It is this work, my campaigning work, which gives me the most pleasure and fulfilment.  It isn't about simply telling our story, it's about working with some of the biggest influencers in the palliative care sector to effect change, to really make a difference.

Tonight I'm in a hotel in Bristol and tomorrow I will join a closed event of academic and medical influencers discussing how we manage end of life care in the UK.  In the evening I will be speaking at a public event looking at what needs to change, how we can do things better.

It's another night away from my children but it's another opportunity to change hearts and minds, to learn from what has gone well, what has not gone well and to continue to move forward in engaging the public in open conversations about how we talk about death and how we care for those who are life limited.

Earlier this week I attended an event at the Palace of Westminster as an ambassador for the children's palliative care charity, Together for Short Lives.

Tonight I'm thinking of.......

Tonight I'm thinking of the mum of the 18 year old first year nursing student who answered the ward phone during a night shift to have the word "murderer" screamed at her down the line.

Tonight I'm thinking of the little girl who is lying in a hospital bed desperately ill as her family gather around her bedside listening to the sound of protesters outside.

Tonight I am thinking of that girl's aunt who had to have a security guard escort her to the ward to visit her niece.

Andy took this picture of Daisy & I in the Interventional Radiology Suite,
as she recovered from her 13th central line insertion

Goodbye Daisy – A very special children's book

Daisy loved school.  Nothing made her happier after a hospital stay to put on her school jumper and know that it was a school day.  Always the bounce-back child she could be gravely ill with sepsis one day, then desperate to get off to school to see her friends and do some "busy work" the next day.

Daisy was the life and soul of her school, everyone knew Daisy and she knew everyone.  She had been going to the same school from the age of 3 and despite her deteriorating medical needs over the years we always found a way to make sure she got some school time.  In her later years school time was limited as her stamina decreased, days were shorter and then she attended for less and less days but she still got to school when she could.

Daisy had her special circle of friends, she had her favourites, she had fallings out with friends, she had best friends, she had favourite teachers, she was just like any other school girl.  In fact she also preferred the social side of school rather than learning and as she got older her teachers had to find lots of different strategies to get her to stay on task as there were so many more interesting things to get up to in the classroom!

Daisy went to a special school, there were lots of children with complex needs at her school, it also seemed that not a term went by without a letter coming home to tell us that one of the children within the school community had died.

Children with additional needs are statistically more likely experience the death of a friend during their school days.  Daisy's death affected the whole school.  Daisy's ability to bounce back from the brink had become a given, everyone was shocked when this time she did not bounce back.  The school got together and talked about Daisy, they played her favourite song from Frozen and released pink balloons and a social story was developed to help the teachers talk to the children about their grief.

Much of this work was thanks to Ella, Daisy's movement therapist, she understood that the children needed to express their grief and feelings even though many of them were non-verbal and communicated mainly via signing.

Angel Daisy ready for the Nativity play

It struck me how lucky we were to have Ella, she had worked with Daisy for many years, helping her articulate her feelings about what was going on in her life through play, movement and stories.  Andy and I had fought hard to have mental health support included in Daisy's EHCP plan and we were fortunate that Daisy's teachers were able to find a solution.  When Daisy died the school responded and helped Daisy's friends with their grief but I found that there were limited off the shelf resources for just this scenario.

 I had looked for books to help Daisy when Andy died, many of the ones targeted for children were just not appropriate for Daisy.  Daisy had a learning disability, she liked direct language, many of the stories were around animals dying and used metaphors or the books were just too complicated for Daisy.  She needed a social story to help articulate her feelings, feelings which in children with a learning disability can often by quite literal.  After Daisy died one of her friends was really concerned that she had not taken her wheelchair with her.  These were the sort of issues which were important to the children in Daisy's class. 

So I have decided to plug a gap in the market and I have written a children's book which is aimed at helping children with learning disabilities communicate their feelings when one of their friend dies.  It's written from the point of view of one of Daisy's friends.  I was really struck by the direct questions many of them asked.  Children are great, there are no metaphors, it's very much black and white, "she's not coming back". This doesn't mean they don't feel sad or have lots of unanswered questions.  When I visited a friend not long after Daisy died I was aware that her little girl Evie who has profound learning disabilities was aware that I was Daisy's mum but was confused because Daisy was not with me.  I wanted to write about Evies feelings and the questions she would have asked and the things she would feel if she had been able to speak.

I have also written a section on what I learned about tackling the subject of death with children with learning disabilities , from talking to Daisy about Andy's illness and death, ensuring  she felt involved in saying goodbye,  to how Daisy's friends felt when she died and how I wanted to help them feel included in mourning for her.

I have also asked the wonderful Ella to write from a professional's point of view, including some information and guidelines for schools, parents and carers to help them when a child from their community dies.  Lastly I hope to include a selection of relevant makaton signs to use when discussing grief, sadness and loss with children with learning disabilities.

This is clearly a very niche book but so essential, it could also be relevant for younger children and children on the autistic spectrum.  I could spend ages pitching the idea to publishers and agents but all that time I'm doing that the book could be out there and be available to support grieving children.  So I have decided to bit the bullet and I've launched a (very scary) Kickstarter campaign.

I need to fundraise the money to get the book published which includes the costs of our fabulous illustrator to bring it to life (once again I will use Helen Braid, she has designed my blog header and my first book cover, she knows my story, she will make the words come to life with her pictures!), books also need publicity and distribution, none of this is free so I have a pretty hefty stretch target to hit!

Already within 24 hours of launching the kickstarter I have raised 8% of the targeted £5K, but I need to keep the momentum going.  I am looking for the big investors, maybe a small company who would like to sponsor some of the book in return for publicity?  An individual who would like to pledge £500 and in return have their child illustrated in the book?  Maybe a philanthropist who would be willing to donate £750 for a training course for their local special school?

Please take a look at the kickstarter page and please share, share, share it.  Even if you only pledge £10 I will send you a signed copy of the book.  Please help Daisy's legacy live on and help other children who are grieving the loss of a special school friend.

https://www.kickstarter.com/projects/goodbyedaisy/goodbye-daisy-a-very-special-childrens-book

Please feel free to contact me on the blog contact form if you want to chat further about ways you could help.

And then she was gone

You were here and now you are gone and my arms ache for you.

Did I do enough?

Did you know how much I loved you?

Did I spend enough time just being your mummy?

My lovely girl.  My Daisy Rose.

I miss you so much.  We all miss you. We miss your voice calling for us, the way you chose which sibling would have a hug depending on what you needed them to do for you.

I miss our cuddles, our special times together.  Chatting to you and telling you funny stories to keep you entertained on the endless trips to hospital for appointments. Singing together as I set up your infusions.  Answering your endless questions.

I avoid the shops you loved, it hurts too much to remember your request for shopping, for money, for big girls clothes, for a new toy....

I talk to you a lot, I dream of you a lot.  I wave to you in the stars.

The house echoes with emptiness.  The silence is deafening.

When you died I switched off your beloved ipad, with all your music and TV shows and games and photos.  I have not switched it back on since.  It still has your fingerprints.  Tomorrow I'm going to turn it on again.  Once more the house will be filled with your soundtrack.

I'm reliving every last moment. It pains me that you were in so much pain at the end, that you were poked and prodded in your last hours.  But we didn't know.  We had been so close to the edge so many times, every time you let us glimpse into the abyss then you turned the corner and came back.  This time you didn't, I knew you were so tired.  You had been tired for so long.  Since daddy died.  your beautiful spark was gone and you tried so hard but it was all such an effort.

And I knew, at the end, it was time to let you go.  And much as I hate the thought that your last hours were filled with fear and pain I am glad we were able to reclaim you and bring you home again. Bring our girl home just as you asked.

I hope that you knew how much you were loved.  How we made sure that we fitted in a lifetime of memories into your 12 years.  We did so much, everywhere I go in London there is a memory of a place we went together, time spent together, precious time.

I always knew our time was going to be short, I could never imagine that we would have the gift of twelve years with you.  Yet I want more, just a last hug, to hold you in my arms, to feel your little curly head against my cheek.

I hope I did enough, I hope you were happy, I hope you knew how much you were loved.

I was so lucky to have been your mummy.

xxxxx

22/12/04 - 31/01/17

#rememberingdaisy
#wasthisintheplan

WTITP Launch video

All the firsts

It's been nearly a year now.  It's been a tough year.  So many firsts; first father's day, first mother's day, first wedding anniversary, the children's birthdays, first new school year, first football season.... the list is endless, every day of this year is the first one since Andy left us.

But the big ones are coming now.  The first time we celebrate his birthday and he's not here anymore.  And we will celebrate it.  Celebrate that he was here, that he was born, that he lived.

The older children and I are going away for the weekend.  We'll raise a glass on Saturday as we remember how much Andy insisted on making such a huge deal of his birthday; "I can't load the dishwasher, it's my birthday", "I have to watch my film/netflix series/sports programme (insert preference here!) - it's my birthday".  So we will make it special and wish him happy birthday, the first without him, now that time has stood still, he will always be the same age.

The Medical Symposium, the Ordinary Mum and the story of an Extraordinary Girl

I'm writing this in a somewhat jetlagged state......

Yes!  I made it, following my successful crowdfunding campaign I was able to fly out to Seattle to attend the Costello Syndrome Family forum and more importantly present Daisy's story at the Rasopathies Medical Symposium.

When your child has a rare disease (and an even rarer manifestation of the syndrome) then the chance to meet with other families and to discuss issues with the doctors at the forefront of research into the disease is immeasurable.

It is rare to be in the same room as children and young people who look so similar to my own daughter but at the same time it was bittersweet as it really brought home to me how different Daisy also is to the other children who share her gene mutation.

I'd give you one.....

......and so would my children

We have had the conversation about what we want to happen to our organs when we die.

Have you?

Have you thought about it?

Have you discussed it?

Have you registered as an organ donor?

More importantly

Have you thought about what would happen to your child's organs if they were to die before you?

That's the tricky one isn't it?

Another brick in the wall

Today we sent a letter to our local education authority, we have made a request for yet another of our children to be assessed for support for special education needs - that's 3 out of four of our children who learn differently, who need support to help them access education and achieve their potential.  Realistically though it should only be one of my children who needs this extra help - Daisy is the one in special school with a learning disability, visual impairment and highly complex medical needs which limit the time she can spend in school.  It's completely logical that she should have a statement and funding assigned to her to help her reach her potential.  But my boys, differently wired, with their own unique learning styles, they have high IQ's, they are eager to learn, they just learn differently - the way they do things, their idea of success and achievement, it's totally out of kilter with our modern day, sausage machine education system.

Rarer than rare and a confirmed diagnosis

Last week Daisy had her whirlwind, multidisciplinary admission into Great Ormond Street where, following gargantuan planning and co-ordination efforts we managed to compress the equivalent of a month's worth of consultations and procedures into a 5 day stay.

The week started off under the ENT team where Daisy had an airway assessment (some scar tissue on the larynx but structurally OK) and removal of her adenoids.  This was the second set of adenoids she had removed, 6 years ago the first set were taken out together with her tonsils but very rarely they can grow back, and as we know with Daisy rare is a word she is very fond of!

Happy 5th Birthday " Was this in the Plan?"

Today is 5 years since I started this blog.  5 years ago, Daisy was 3 years old and was once again in hospital,in the early weeks of a stay which eventually lasted for 12 months.  5 years ago this month she had her first central line inserted into a main vein into her chest, the tip of which rests near her heart, and she started on the intravenous nutrition (TPN) she still needs, 5 years on, to keep her alive.  I started this blog as a way of recording what was happening in our lives at the time, over the years it has evolved and changed as we have had to adjust and change to the constant challenges being thrown to us.

The day I dodged a bullet

As my children grow up I find myself using some of their phrases to describe things and "dodging a bullet" really does describe what happened to me recently.

aaah - the wisdom of Yoda...

When you are a full time parent carer life tends to revolve around the health needs of your child, or in my case children - together with Daisy's ever increasing care needs, IV infusions, TPN, pain

Happy Birthday Daddy Pig!

Anyone who knows Daisy well will know that one of the most important things in her life is Peppa Pig, the cartoon character - in Daisy's world she is Peppa, Jules is George, I am mummy pig and Andy is Daddy Pig.  It is an absolute sign of affection if she calls you "Pig".  Andy bears a lot of similarities to Peppa's daddy - he likes to hide away and read his paper, he's not very good at keeping fit, he loves chocolate cake and he often gets things wrong which mummy pig has to sort out!!!  But most of all, Peppa loves him, just as Daisy loves her own Daddy Pig!

Here's to the geeks - because of them I'm not alone

Sir Tim Berners-Lee, Inventor of the World Wide Web

When I left university and came to London with Andy my first job was a graduate traineeship at Mercury Communications, the telephone company set up as a rival to the de-nationalised British Telecom.  I worked in various bits of the company - from the mobile phone division, to the messaging division to managing the Criminal Justice Sector Marketing for the Government Sector Division.  At this time the internet was in its early infancy and being developed and used by techie people in darkened rooms.  Not long after I joined Mercury a new Chief Executive was appointed, his name was Mike Harris - he was (and is) a real business visionary and he spearheaded a company wide programme called Imagine 97 (bearing in mind it was 1992 at the time!!!) which was focused on getting the whole company to think about the possibilities of communication and technology offered by the company five years on (and beyond).  I vividly remember the main premise was that the communications sector would grow to offer what the company called "PIE in the Palm" - People, Information and Technology in the Palm of your hand.

I wish someone had told me........

While having a quick tea break in the parent's kitchen today I got talking to the mum from the next door cubicle, recently arrived with a newborn baby.  As we chatted I realised that I could have been talking to the person I was nearly 7 years ago when I arrived at this hospital with a tiny baby and a whole load of question marks and worries about how her life would pan out, she too has 3 other children, similar ages to my children when Daisy was born (&, 5 & 2) and as we talked  and she shared her thoughts I realised I was telling her all the things I wish someone had told me all those years ago.....

So for the benefit of anyone else embarking on this journey of hospitals, disability and caring here are the things I want you to know -

• Allow yourself to grieve - mourn the child you thought you would have, adjust to the child you now have and find a love for that child that you never thought possible

• Worry about the future if you must but learn to go with the flow and live for the moment, as time goes on you will stop fighting the things you can't change and only focus on the things you can influence, you will find that you can live in the moment and gain perspective. 

• Don't be afraid to accept help or ask for help.  That was the hardest thing we had to do, we saw it as an admission of failure, that we could not look after our own child, it is not.

• Remember that you are your child's mother - when your child has complex medical needs and you spend so much time in hospital you become medicalised and institutionalised and bogged down in numbers, values, rates, ranges, results - monitor these things if you must but remember that your mother's instinct has never failed you yet

• Look after yourself, if you fall apart you are no good to anyone.  I am determined not to turn into one of those women you see at the front of the hospital dragging on a cigarette, still wearing their pyjamas after lunch time - I dress, do my hair, stick on some lippy ready to face the day.  I go out for a walk every day, I drink skinny lattes and read the paper......do whatever is necessary to keep body and soul together through the stress

• There is no such thing as the perfect family.  Look around you, the families you think are perfect, are not .

• Your other children will get through this.  I felt so guilty that I had ruined the other three children's lives, I have not.  It's not what we planned for them but we hope that their lives have been enhanced.  They are more caring, they are more independent, they have had a varied range of life experiences already.  Yes it is really really tough on them having to be parented by rota or having plans cancelled at the last minute by their little sister's major spanners in the works, but they will survive and as Theo's play therapist once said to me " this is just how it is, no-one's life is perfect (see above)".  I truly believe they will be better people for it.

• You will worry about money then you will discover what is important, you will stop sweating the small stuff and things will start to fall into perspective and with some careful planning and management you will survive the practicalities of this new life

• Make lists, write things down, ask questions but don't always expect answers, know when to stop asking and just to live in the moment

• Know that you are not indispensible - your child needs to be independent from you more than any other child. Your job as a parent is to prepare your child for the big bad world, when you have a child with additional needs - whether they are medical, physical or a learning disability (or in Daisy's case all three), this job starts on day one.  Leave them with a carer, leave the ward occassionally so they know you will come back, teach them independence, help them learn confidence and to be their own person.

• You will have a life again, the extremes will be great, the moments of happiness will be concentrated into smaller timescales but you will apppreciate them so much more

• You will meet people, go to places, experience things that your old life will never ever have introduced you to.

• There will always be someone worse off than you, be there for them, people will be there for you

• Savour every single day with your child, you do not know what tomorrow will bring.....