Happy Father's Day (especially to those of us pulling the double shift)

Every year on Father's day I send a message to other mums I know who are single parents, acknowledging that they are pulling the double shift .

Diagnosing autism - services need to be increased, not reduced.

If you are a regular reader of my blog you probably know that my two boys both have a diagnosis of high functioning autism, sometimes called Asperger Syndrome. 

My boys are very different, both have different needs but thanks to some great support they are on their way to fulfilling their dreams.

It was not always like this.  Our journey to diagnosis for the boys was long, convoluted and costly.  In many ways it was so much easier with Daisy, her disability was so extreme and obvious the support clicked into place immediately.

It’s different with the so called “invisible disabilities” however.  The lifelong neurodevelopmental disorders that fall within the autism spectrum are difficult to spot and children can fall between the cracks in our broken system without the support they need.

The lottery of life

Xanthe took this picture in early January, Daisy was in for an MRI under general anaesthetic as her neurology team tried to work out why her physical abilities had deteriorated so dramatically over the past few months. It was only a few weeks later that same month that Daisy passed away in the intensive care ward of the hospital.

This picture does not just speak volumes about the bond that Daisy and I had, that speaks for itself.  For me it also tells a story of a little girl who was safe and sound.  No matter what was going on in her life, she was cared for, she had a roof over her head, she had access to help.

Back in the narrative

Andy and I believed strongly that experiences of life were as important a part of our children's upbringing as their formal education.  Despite the limitations of respite and the need to manage Daisy's care we were still doggedly determined to make sure that our other three children were able to have a childhood rich with experiences and where possible the chance to visit new places and meet new people.

I promised Andy when he died that I would still do that, I would still ensure that our children saw the world and experienced life.

Last week Xanthe and I went to New York for a short break.  It occurred to me that this was the longest we had spent together on our own since Daisy had been born.  What a wonderful opportunity.  We were celebrating Xanthe's recent 18th birthday, fulfilling one of our plans, a mum and daughter, girls only holiday in NYC.

I have written a book

"You should write a book"

I've lost count of the number of people who have said that to me over the years.

So I did.

wasthisintheplan book cover

I promised Andy I would.  I promised I would capture our story and share it so that people could understand that we really are ordinary people thrown into extraordinary circumstances.  I was no different to thousands of other working mums in the UK, trying to juggle a career with childcare.  Until Daisy came along, and my world changed overnight.

It's experience that has shaped me and given me the resilience to face the challenges life has presented over the years.

That's why the book's strapline is "It's not the cards you're dealt, it's how you play them"

Andy played poker and he knew all too well the game was more than the hand you were dealt.  I hope I have done our story justice.  The people who have read early edits seem to think so.

My book is being launched on 12th September on what would have been our 25th wedding anniversary.  It's my gift to Andy and a legacy to our children.

You can pre-order a copy before the launch date and receive it the day before.  For all pre-orders I will donate 5% of the rrp to our hospice, ShootingStar-Chase.

The book will be available to order from Amazon and all good bookshops on the launch date.

 International orders and ebook orders will be available from that time too. An audiobook is in the pipeline for release at a later date.

In the meantime if you are based in the UK and would like a copy, please click on the link below.

An empty wheelchair

One of the first things I did the day after Andy died was to bag up all his meds, injections and creams and take them back to the hospital.  They were a visible sign of his cancer, they were not Andy, they were things that had become part of our lives after his cancer diagnosis and I didn't want them in the house any more.

I wanted to remember a time when life with Andy wasn't medicalised.  When it didn't revolve around hospitals and chemo and drug regimens.

In only a short time we had collected quite a pharmacy for Andy

The long goodbye

We took Daisy back to school for her funeral, one last trip to the school she loved and had attended from the age of three.  I wanted to hide under a rock but because Daisy touched so many lives it was important that everyone got a chance to say goodbye.

We did her proud.  My beautiful rainbow girl even arranged for a rainbow to appear over the school at the very end.

Coming to terms with it all

It's so hard to believe that Daisy has gone, that we will not see her any more, that I won't hear her call out "mummyyyyy!!!!!!!".  She was the centre of our home.  Everything revolved around Daisy, because she insisted it should.  Her siblings were at her beck and call, in and out of her room, sorting out her ipad, responding to her demands, cuddling her, just being there.  That's what Daisy liked more than anything, to know that we were there.  She just needed to have us around.

Over the past couple of months she had been spending more and more time in bed or lying on the sofa, with her ever present ipad, she liked to observe the domestic chaos of our home.

And now this focal point has gone.  And we wander in and out of her room like lost sheep.

How can it be that in the space of less than fourteen months we have gone from a family of six to a family of four?  The house is too quiet.  The washing basket a testament to the reduced numbers.

Daisy passed away on the intensive care ward at Great Ormond Street hospital.  The team did everything they could but in the end it was Daisy's time and she was tired.  She had been tired for a while.  I knew it was coming.  But even when the end came it was such a shock.

We moved her to a lovely room the hospital has on it's intensive care wards.  It's the room for the children who have passed away.  There is no medical equipment, they have made it as homely as possible.  In this room we shed our tears for our girl and kissed her goodbye away from the beeps and alarms in the main ward outside.  The nurses washed her and thanks to our hospice team we then brought her home for one last time.  She just wanted to come home.

Our hospice at home nurse met the boys at home and got her room ready, setting up a cold blanket on her bed.  Xanthe and I followed behind, bringing an empty wheelchair and a bag full of memories.  The funeral directors who had dealt with Andy's funeral the previous January brought our girl home and she spent the night in her bed, surrounded  by all of her favourite toys as we drifted in and out, each spending quiet time with her, stroking her face, hardly able to process the reality of what had just happened.

The next day she was taken to her beloved hospice, ShootingStar-Chase, as we always knew she would.  She stayed on her cold blanket and rested in one of the bedrooms as the special chilled bedroom was already occupied.  This was a better option for us as we could sit in Daisy's room with her and in time allow some close friends to come and say their goodbyes.  Xanthe and I chose her Princess Anna from Frozen dress to wear and my friend Sam brought a beautiful flower crown of fresh roses and eucalyptus.  We sat with her smiling and laughing and remembering so many happy times.

When a child dies and is resting at the hospice the team hang a butterfly outside the front door.  For many years I visited and saw the butterfly, and then it was Daisy's turn.

The hospice seemed so quiet without Daisy, without her pumps beeping or her constant presence checking what everyone else was up to.  I stayed in one of the parent flats and being there cocooned me from the outside world and allowed me time to process what had happened.

But I knew we had to face the reality so last Friday Daisy was moved to the funeral directors and tomorrow I will visit and tuck her in for the last time,  surrounded by toys.  On Wednesday we will take her to school for a final journey and hold her funeral there, it's only fitting that Daisy should do things differently after all.  Her cremation will be held privately with just myself and the three children on a separate date.

We had twelve wonderful years with Daisy, she taught us so much, it's time to let her go and say goodbye.  We will do her proud.

This is the link to the page for donations in Daisy's memory to our hospice