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.

When going to hospital is the only option

 Gosh, has it really been four months since I have updated this blog? Like all of us, it's feel like time has gone really quickly, but at the same time, it's plodded along slowly.

We're in lockdown 3 or whatever the official term is in the UK; the PM made an official announcement at the beginning of the week outlining the next steps to eventually take us out of lockdown.  I don't watch the official announcements; all I care about is ensuring people are vaccinated. I know the impact of lockdown; I've seen and experienced it first hand, but I also don't want to rush out of it.

My two children who are still in full-time education are zoombies...sitting for hours on end watching lectures, my poor youngest son is training to be a chef via zoom, my eldest daughter is attempting to complete a degree in Film Production virtually.

We are coming to the end of the period of anniversaries; at the end of October, we marked 20 years since my dad died of cancer, then Andy's birthday was in November, then they come thick and fast. Five years since Andy died and just last month, four years since I last kissed my darling Daisy and held her in my arms.

On top of all of this, a beloved family member, the woman I have always called my "sister from another mister" (one of only two women to get his honorary title), died in January. I'm going to write about this separately , but the grief, ontop of grief, has been hard at times, especially because we have had to learn how to grieve during covid times.

So much has come to the surface during this strange, dystopian time, feelings that I didn't anticipate. An ongoing sense of relief that Daisy is not living through this time, guilt at those feelings and reflection on how I would have coped and how my friends, still in the world I left behind after she died, are coping.

I received my first vaccine a week ago.

I was called because I am still a carer.  It's not something I really consider; caring for Daisy was caring at a level of magnitude beyond my life now, but there is still no escaping the fact that my two boys are neurodiverse.

Anyone who reads this blog will know that I consider our ability to receive vaccinations to prevent disease a great privilege. And while I was honoured and quite emotional to receive my vaccine, it was an experience tinged with guilt and frustration.

I was fortunate to receive my vaccine yet at the same time I knew that the population dying in greatest numbers from Covid infection have not been prioritised for vaccines.

This feature in the Financial Times sums it up; people with disabilities accounted for 60% of deaths from Covid last year, many of those have a learning disability. In the first five weeks of the current lockdown, 65 per cent of deaths among people with learning disabilities were from the virus, according to the NHS.

It beggars belief that this group have been ignored, and as always, it's fallen on the those who are able to use their voices to raise awareness and tell the world about the forgotten ones.

Many of you will have heard and seen Jo Whiley speak about her sister Frances this week.  Jo wrote the foreword to my book; we know each other and have many things in common, not least the fact that we both care for someone with a learning disability, in Jo's case, her sister Frances.

photo of the broadcaster Jo Whiley with her arms around her sister Frances

Jo was able to use her profile to let the country know about what is happening under our noses, that people like her sister are not being prioritised for a vaccine despite being at high risk. My friend Sam Carlisle, a fellow writer whose daughter Elvi attends the same school as Daisy, wrote very eloquently about it in this article for iNews.

And then the worst happened. Jo's sister tested positive for Covid, and very quickly, she became symptomatic, to the point that she needed hospitalisation.  Her family's worst fears had materialised, and their nightmare began.

Because the hospital is the worst place when you have a learning disability, and you are anxious, even worse if your oxygen levels are in your boots and people are trying to force a mask on your face.

Jo has spoken about her sister having to be restrained, about nurses struggling to care for Frances, about her poor parents running on empty as they attempted to keep her calm while making the most difficult of decisions in their lives about their precious daughter.  I know about that, about not being able to leave my child's side , fearing for her safety if I did take a break and having to have unimaginable conversations with doctors about what could be done.

Thankfully Frances' story has a happy ending.  Her super-human strength and determination got her through. I remember so many similar scenarios with Daisy, one minute at death's door, I would be numb with the adrenaline coursing through my body and the next minute she would be sitting up in bed, demanding to go home and go to school - while I would be picking myself up from the floor!

At last, people are waking up to the fact that once again, people with learning disabilities have been ignored.  It took Jo's decision to use her profile and share the realities of the impact of the vaccine prioritisation to wake policymakers up.  And eventually the the announcement was made and now people with learning disabilities will be prioritised to receive a vaccine.

But as always, it shouldn't be like this.  It shouldn't take a high profile person raising awareness because a dearly loved sister is at death's door to change policy.  

Now at least, through hearing Jo openly and honestly share Frances' story that we have a better understanding of why the death rate is higher among people with learning disabilities. 

One thing that struck me about Frances' story was the fact that when they arrived that the hospital the only acute nurse for people with learning disabilities was not available. It's great that learning disability nurses exist, and they can make such a difference for a planned admission. But what about an emergency admission?  When the person in question is not a regular in the hospital?

Daisy would always bounce in and out of hospital, as regular readers know, so the emergency department kept background notes in a file on the main desk, and her regular patient notes were kept permanently on the children's ward.  That helped a bit, but it was down to the staff who knew us day to day and understood how to manage Daisy's behaviour and support me in caring for her , who were best placed to make the reasonable adjustments she needed.

Over the years, things got better with Daisy's care, both through my perseverance in ensuring that staff caring for Daisy understood the impact of her learning disability and because Daisy was such a regular visitor at both our local hospital and at Great Ormond Street that staff got to understand her needs.

Photo of Daisy in a hospital bed with Steph in bed cuddling her

One of the best stays we ever had on a ward was a planned admission for a major surgery.  The nurse in charge had consulted the learning disability nurse consultant prior to Daisy's admission, and it was agreed that while Daisy was an inpatient, an additional healthcare assistant would be assigned to her alongside the named nurse for the day.  This meant I had an extra pair of hands to care for Daisy and someone who could sit with her so that I could take a break (aka - take care of my other children at home!).

A sign was put on Daisy's cubicle door asking people to knock before entering and to check with me first if it was OK to come in.  It also informed people that it was best to stand at the end of the bed so that Daisy could see them as her poor peripheral vision meant that she would be scared if she did not realise that someone was approaching her from the side and would be likely to lash out.

I would use social stories and make up photo books with pictures of the hospital and ward prior to a planned hospital admission to help Daisy understand what was going to happen.  Social stories are brilliant for children with learning disabilities.  I remember taking Daisy for an early ecg when she first started having seizures.

The neurophysiology team had written a social story for a child to understand what to expect when having an ecg.  Daisy studied it diligently and was very compliant during the test; I could not understand however, when we were leaving, why she was so agitated, putting the brakes on her wheelchair and refusing to move.  Then I remembered, the last bit of the social story involved being given a sticker at the end of the test, and the nurse had forgotten this last vital element!

Play therapists and specialists were also vital in helping Daisy prepare for procedures, bringing dolls with various lines and stomas to explain operations, and taking us for trips to scanning rooms so that Daisy would be able to choose a film to watch while having a scan and wouldn't feel scared seeing the equipment for the first time.

Of course, these are all examples of planned admissions where a child/young person/adult is a regular in hospital. But what about the emergency admissions?  Cases like Frances?

Most parents/carers of children/adults with a learning disability will confirm that they will do everything in their power to keep their child out of the hospital and keep them at home. So when you end up taking your child to A&E you know it's bad, that there is no other choice and they have to be in the hospital.

And of course, hospital is not home, and it's anxiety-inducing which can lead to challenging behaviour and lack of co-operation and that can make simple treatment, like adminstering oxygen impossible, which then becomes a life-threatening situation.

So what can be done?

Well if you're a nurse or a doctor or a carer then think about the impact of hospital on a scared and sick person who cannot articulate how they feel.  All those strange noises, smells, let alone the people asking questions, poking and prodding. You don't have to have training in caring for a person with a learning disability to be able to stand in their shoes and understand the sensory overload and fear. 

Think about simple things that may help - reducing light and noise. Minimising questions, the number of people around the bed, ask carers what they need or how to help.  These are simple reasonable adjustments that anyone can do.

Then there are other things.  Look after the carers so that they can look after the patient.  So many times I would be sat, unable to leave Daisy safely but my head pounding from dehydration after hours in A&E or starving or just needing to take a break and collect my thoughts. There were not many times where someone came up to me, unprompted and offered to sit with Daisy so that I could take a break.

The sign on the door was a real breakthrough. Daisy learned to be terrified whenever someone came into the room as that was often associated with something bad about to happen.  Knocking and checking if it was OK meant I could then tell Daisy what was about to happen.  Explaining on a sign about where to stand when coming in the room meant that many staff were spared the left hook of a child who was startled because she had not seen or heard them approach from the side.

I would often have to remind people not to talk over Daisy or talk about her as if she could not understand - it's obvious isn't it, but it happens all the time.

These are simple adjustments, on their own they won't change the world but they might make things slightly better.  I can't solve the problem of how to get a non-compliant, terrified patient to accept an oxygen mask or nasal cannula or to not try and pull out an NG tube or IV line...these are bigger things and maybe if someone sat down and really thought about it, maybe they could come up with a solution.

But the biggest change might come from anyone who finds themselves caring for a person with a learning disability in hospital trying to think about what it feels like to be them at the moment in time....maybe that way we don't need to worry about whether a learning disability nurse is available to advise a team because everyone in the team is able to think about what reasonable adjustments might just help turn that corner.

I'd be really interested to hear feedback from readers who can share some good examples of how reasonable adjustments can positively impact a hospital stay.  Please feel free to share and comment below.

Black and white photo of Steph lifting Daisy out of a hospital bed taken from the door of the room