Protecting the herd

I just can't help thinking, if Daisy was still alive, what would it be like? How would we have coped - she would have been one of the so-called "shielded ones", those who received a letter at the beginning of lockdown  telling them to stay at home for twelve weeks and not venture outside.

Her school is closed. She barely went to school in her final year anyway, there were so many problems trying to get nurses able to be with her in school and I was concerned for her safety.  So I guess I would have been attempting to home school her.  She would have been missing her friends, missing walks in the park, her regular trips to the local shops which she loved so much.

What's your grief

This is the last ever picture I shared of Daisy before she died.  It's the day before she died, she was deteriorating but had not reached crisis and the point of no return.  I had asked for a visit from one of the hospital's Pets as Therapy dogs as Daisy was so sad and missing home and really missing her dog. 

This visit was a stop gap, I had plans in place to bring her beloved dog Pluto to the hospital to meet her, by hook or by crook, at the hospital entrance so that they could be together and he could hopefully cheer her up, she was asking for him constantly.....

The visit from Pluto never happened....24 hours after this picture was taken, Daisy had taken her last breath...

And this picture makes me sad, because it's a reminder of that last promise that I was not able to keep. All she wanted was to go home, and most of all to see her dog who she loved so much.

I know I did everything possible during Daisy's life to make her happy.  I fought to ensure that she was seen as a little girl and spent as much time as possible doing the things she loved.  I advocated for her to get her the support she needed, I trained to administer the most complex of regimens to keep her out of hospital....I know I did everything for her....

....but grief can cloud your rational brain.....

Tonight it's three years since that picture was taken, it's the night before the third anniversary of Daisy's death and seeing that picture made me sad. Sad that despite everything else I had done, I didn't do that one last thing for her, even though I know events took over, even though my rational brain is screaming that I'm wrong, I still feel sad.

Grief is a bitch.....it really is.  Those five stages of grief that we are supposed to move through: denial, anger, bargaining, depression and acceptance , I can confirm that grief isn't like that.

Grief makes you think in an irrational way, it makes you lose logic and reasoning.  And then when you think you've got the better of it, it comes back, through a smell, a sound, a taste, a touch, a photograph....and you are right back in the moment.

I have learned a lot about grief over the years. It affects us all so differently.  It isn't always the keening women at a wake, or the tears and widows weeds.  For me it's been channelled into doing,  into making meaning of all of the things that have happened to me.  Keeping memories alive and using my experience to help others.

Grief doesn't have a pattern or a predictability, it isn't a stereotype.  It's something I carry with me, always.  And it doesn't make me a sad person.  Well sometimes it does, when something unexpected hits me , out of the blue, like this photograph.  And then, very privately I allow my tears to fall.

Despite my decision to share so much of my life with Daisy through this blog I am actually very private, my grief is mine.  It's my burden to carry. And I will always carry it, tucked away inside me, it's a part of me that will always be there.  It waxes and wanes....

The anniversaries are the hard times and time, while it lessens the intensity, doesn't heal. Three years since that last time I held Daisy, I live every moment leading up to it, like it was yesterday, I allow my grief to surface and to take me back to that place....I need to do it, I need to connect with my daughter, I need to remember....I'm scared to forget.

I am scared that if I don't feel it that she will slip away and the umbilical connection I have with her will be finally severed...and I'm not ready for that yet.

I'll tgo back to the hospital tomorrow, to the chapel where we held her wonderful memorial service.  I'll go to the place where the big book is kept, every day the page is turned and tomorrow it will be January 31st , and I will see her name inscribed in the book....the day she died.

I'll have a cry and a moment of reflection. Then I'll tuck my grief back deep inside me, living with me always. My life, my grief.

These are the difficult days

These are the difficult days.  The winter days. The onslaught of anniversaries and reminders is ceaseless.

It seems never-ending and the season is so appropriate but always the optimists we really do try and find joy and remind ourselves how lucky we are to be alive and to have so much in our  lives. But on the dark, cold, wintery evenings....evenings like this, it can be difficult.

It seems so unfair that everything has conspired to hit at once.  It starts at the end of October, the anniversary of when my own father died of the same cancer that killed Andy.  He would have been 80 now, I was 32 when he died, and the mother of a 3 year old and a 1 year old.

Speaking at the launch party for Goodbye Daisy last week

Goodbye Daisy - a book to help children talk about death

"if you want something you will make it happen...if you dont. you'll find an excuse". A colleague shared these words with me many years ago and it's the mantra by which I live my life.

I really wanted to write a book to support learning disabled children through their grief when someone close to them died.  It could have been so easy for me to come up with an excuse; after all I have a lot on my plate already.

But I really wanted to get this book out there, to help the children like Daisy's friends who don't have the words or voices to articulate their feelings of loss.

So I did it. Earlier this year I launched a Kickstarter because I figured my proposition was so niche it would take far too long to persuade a mainstream publisher to take it on.  I achieved target within weeks and today Goodbye Daisy was officially published.

I am so proud of it. It's a book in three parts; a beautifully illustrated social story featuring a little girl called Elsie.  There is also a section of advice for parents and I worked with psychotherapists to develop a section for professionals supporting children, families and staff in schools.

You can buy Goodbye Daisy from all online book retailers or order a copy via your favourite bookshop.  You can also order a copy direct via my publisher using this link.

I've put a holding website up at www.GoodbyeDaisy.com and in the spring I hope to launch it as a full resource site with links and information for parents, carers and schools as they support children in coming to terms with the death of a school friend.  I am also planning on offering a half day training course to schools (please email me via this blog if you are interested).

Next January it will be two years since Daisy died.  So much has happened in that time and that little girl's impact has been spread far and wide.  I'm so proud of this book, I hope it will help lots of children and help grown ups engage in the difficult conversations about death and dying and remembering happy times that are so much an inevitable part of a special needs community.

Thank you to everyone who pledged and who has already pre-ordered the book.  Please tell people about it, share the links and review it so it can get to the people who need it, when they need it.

This one's for you Daisy, always dancing in the stars!

#GoodbyeDaisy

To dance like no-one is watching....

There's been so much going on here, I just have not had time to update my blog, as always though I walk around with my head brimming with words and ideas.  It's just that the paid-for words have to take precedence over my own personal musings!

The most important news is that we hit the Kickstarter target for my new children's book "Goodbye Daisy".  It's all systems go now and I'm delighted to be working with both Hashtag Press and the supremely talented illustrator Helen Braid to turn this very important dream into reality.  I want to make sure that when a child with a learning disability dies, the friends they leave behind have a book that will help them with the feelings of grief and loss that they struggle with.  At the moment publication is pencilled in for late autumn.  The sad fact is that children with additional needs are more likely to die during the winter months so it was important for me that this book was available in time.

For those who haven't seen the cover reveal on my social media channels, here it is

I really feel that Helen has captured Daisy's joy and determination!  The book will be available for pre-order in September, I will also be setting up a Goodbye Daisy website listing resources and support available for parents, carers and professionals supporting a learning disabled child through grief.

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.