The decision no parent should ever have to face

Nearly 6 months ago I had to make a decision that no parent should ever have to face.  I had to agree to the hospital turning off my daughter's life support and to let her go.

I always knew the day would come.  I knew that Daisy would die before me but I just did not know when or how.  As it was we had 12 years with her.  In her final three years the effect of the seizures and long term total parenteral nutrition (TPN) caused brain and neurological damage. We could see a clear deterioration, a very slow but painful decline.

When Daisy was about 7 she was referred to the palliative care team, she had been under hospice care since she was 6 months, but in agreement with the hospital we understood that we needed to focus on maximising Daisy's quality of life and enjoying the time we had with her.

These foolish things remind me of you


Linden Lodge Friends Forever Garden pictureIt catches you unawares, when you least expect it.  Those little things.  I'll be  in a shop and see a something that I know Daisy would like, would have liked, and remember that I'm never going shop for her again.  No more trinkets from festivals, tshirts of her latest favourite character, no more over the top accessories or endless craft supplies.


mothers day card from daisy

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
https://www.stephnimmo.com/buy-the-book


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
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