Remember when....


#RememberWhen is the hashtag for Children's Grief Awareness week in the UK.

The week starts with the global day for remembering children who are grieving the loss of a parent or sibling.  It always takes place in the run up to Christmas/the holiday season, after all it's this  time of the year that the sense of loss can be most poignant.
For children the run up to Christmas is about anticipation, fun...for our family it is a constant reminder of the two huge, gaping holes that are in our lives.

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.


I'm one of the lucky ones.....

"your positivity is infectious" a twitter follower once told me after I had spoken at a book festival.  I know, I am one of those annoyingly glass half full people who really does try and see the positive side of every situation...

picture of steph wearing a green jumper on a beach holding Daisy in her arms. Daisy is three years old and smiling.

I count my blessings....I understand my privilege...

I understand that the experiences and life I was able to give Daisy when she was alive came from this privilege.  I used skills honed in a successful business career to negotiate and navigate complex systems of health and social care so that I could fight to get the best support for my family.  We live in our own home, in a nice London suburb, in easy reach of a centre of excellence in paediatric care and a children's hospice..

Everything was in place so that when Andy died I was supported in caring for Daisy through my grief and when she reached the end of her life we had already had the difficult conversations, I knew what she wanted, I knew that we had given her the best quality of life possible.  After she died I was able to bring her home to rest.  The children and I were supported through our grief and loss and able to adjust to our new life without Daisy.

I had confidence, life-skills and experience on my side and these all ensured the best outcomes for our family, despite the fights and stress.... I was still one of the lucky ones.  When Daisy was alive we were supported, we received respite breaks, some funded support in the home, excellent palliative care...

It was not perfect but it was so much better than many families like ours.

It should not be like this...it should not come down to a postcode lottery.  It should not be about having the skills and confidence to speak out.  Families caring for the most complex children in the UK should be receiving support regardless of where they live or their ability to shout the loudest.  When a child is terminally ill families should be supported in making plans and optimising their child's quality of life.  When the child dies they should be supported through their grief and afterwards.

Families caring for life-limited, complex children need support, they need to be allowed to focus on their child, not the fight.

I had so much in my favour and yet I still had to fight....

Now, after Daisy's death, I spend all my spare time using my privilege to fight for the other families, I don't want excellent palliative care and end of life planning be down to a postcode lottery.

Earlier this year I spoke at an All Party Parliamentary Group on children who need palliative care.  The report of that group is launched tomorrow in the House of Commons and I will speak again, to an assembled group of all party MPs and members of the House of Lords.  Once again I will share our story, I will talk about the constant stress, the unbearable fatigue and the fight that every family caring for a life limited child has to go through, but I will also tell them about the utter joy that Daisy brought to us in her short but important life.

And when I speak, as always, I speak for all of the families like ours, those who are grieving their child, those who continue to fight.  One day, maybe I won't have to speak out, one day families who care for the most complex children will be able to be families and make the most of their precious time together.


You can read about the work Together for Short Lives charity has been doing with the All Party Parliamentary Group here.







Now we are four

"a third of our family has gone..."

My eldest son has aspergers.  His directness and honesty can be bluntly refreshing.  It's true, we are now a third smaller, four instead of six.


The past year, since Daisy died, has been spent trying to adjust yet again to our new family dynamic.  This summer it really came together, we have reformed as a unit of four, all of us intent on our paths, strongly looking forward, resolute to keep going.

I feel that we have turned a corner over the past few months, accepting where we are now, starting to look forward, beginning to make our way again.

When Life Gives You Lemons: Amelia Denton


I am loving this WLGYL series because it has introduced me to some incredible people.  Sometimes those people were under my nose and I've been able to look at them with new eyes.

I've known Amelia since she was a little girl.  She is my friend Suzanne's niece and my first meeting with her was when she was a bridesmaid at Suzanne's wedding 26 years ago (in fact it was Suzanne's husband, Jon, who first introduced me to Andy).

I really did not take much notice of Amelia at the time apart from noticing the fact that had a disability.  I knew nothing of disabilities in those days and I probably felt pity and maybe even a level of discomfort in engaging with her.  She was a little girl after all and communicating with children, let along children with disabilities was not something on my radar in those days.

But I am so fortunate to have got to know Amelia the person.  I've seen her grow up through Suzanne's eyes as she posted pictures of Amelia's achievements, always the proud Auntie.  And now I know Amelia the woman, the mother, the person who wants to make a difference, and I'd like you to get to know her too........

picture of amelia in a striped dress holding a one year old elliot on her lap, elliot is wearing a babygro, amelia is smiling at the camera
Amelia and her son, Elliot

Video: Palliative Care Talks

I few months ago I was interviewed by Lucy Watts as part of a series she is running called Palliative Care talks, it was great to participate alongside best-selling Irish author Sharon Thompson too.  Sharon is also a bereaved parent and I was shocked to learn that Ireland only has one dedicated children's hospice....



Video: How to deal with bereavement as a parent

I recently made a short film with Nurture Channel for You Tube on my own experiences as a parent coping with the death of my husband and my child and how I supported my children (and took care of myself) during our loss and ongoing grief


When Life Gives You Lemons: Marni Smyth


About a week ago my friend Suzanne shared a post on her timeline.  It was a Go Fund Me link for her friend Marni.  Marni was fundraising to buy a new powerchair. This chair is going to cost more than her car! Yet without a decent chair Marni is denied access to the life that most of us take for granted.  She is denied independence and the opportunity to pursue a career she loves, for which she trained and is supremely qualified to do.



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