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.



Riding 100 Miles: For a very special reason

"Mum's on Box Hill again!"
Over the past few months, aside from holidays and breaks for illness I have swapped my regular running and swimming training for long rides on my road bike out into the beautiful Surrey Hills, always fitting in a coffee and flapjack in the cafe at the top of Box Hill . That is the point in my ride where I inevitably get a text from one of my children asking where I am and what time I will be home as there's no food in the house....
On Sunday 29th I will be taking part in the Prudential Ride London-Surrey 100. It's a 100 mile bike ride through London, out into the Surrey hills and back again. "Why, oh,why are you doing that Steph?" you are probably saying to yourselves.
Well it comes down to a medal. And not any medal, it's the coveted London Classics Medal.
picture of the gold london classics medal with gold ribbon

Launched last year, the London Classics medal is awarded to people who have achieved the three premier London-based endurance challenges; the London Marathon, the 2 Mile Swim Serpentine event and Ride London 100.
Well having two out of three in the bag I couldn't resist going for the big one, adding Ride London 100 to my CV and receiving that big piece of extra bling in the bargain (together with the Ride London medal).

Daisy hugging steph who is wearing a black baseball cap and has a medal around her neck
Daisy loved to see my medals. She was my biggest fan. She cheered me on in countless races and when she could not be there she loved to inspect my medals once I got home. She would have loved to see this new, extra-large medal and hear the story I would tell about my exploits going up the hills very slowly and down the hills very fast. I would always have to put a funny spin on the story, I would probably tell her about how the water bottle flew off my bike last Sunday as I hit a pothole in the road while going far to fast downhill.

steph posing with her bike at the top of Box Hill in Surrey

I didn't get a place in the ballot for Ride London but as always our beloved hospice ShootingStar-Chase came up with the goods and offered me a place. And as always I will not only dedicate my race to Daisy, tucking a daisy into my hair in the morning so that she is with me, but I will use it as an opportunity to raise awareness and funds for the place that walked beside us every step of Daisy's twelve years.
ShootingStar-Chase were there from the beginning of our journey with Daisy, giving us much needed respite breaks, emotional and practical support at time when we were drowning and overwhelmed. They were there when Andy was diagnosed with terminal cancer and at the end of Daisy's life they were there to help us pick up the pieces. All of the support that was given to us was free and yet the hospice, just like all the children's hospices in the UK, receives minimal guaranteed government funding for it's services. Services which support the sickest and most fragile children in the UK for however much time they have.

So, on Sunday I will ride, not just for my extra big medal, but also for Daisy and for the thousands of life-limited children in the UK who are not expected to reach adulthood but rely on children's hospice services to ensure that their lives, however short, are the best that they can be.
Here's the link, it's the same one as always, the one I set up when Daisy died. Wouldn't it be brilliant if we could hit a nice round figure?
JustGiving - Sponsor me now!

It's going to be hot on Sunday, it's going to be hard work but as always nothing compares to the daily challenges Daisy always faced with a smile.And of course there's the medal, I have to get that medal for her!










Happy Birthday you imperfect, beautiful thing #NHS70

Happy 70th Birthday to the NHS.

To me you are like a favourite aunt, cantankerous, imperfect but full of love and always there when you need them.



I truly believe that without the NHS we would not have had twelve wonderful years with Daisy.

NHS doctors and nurses cared for me when I was so poorly and pregnant with her.  She was scanned and monitored and eventually the decision was made to deliver her by caesarian section.

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

front cover of the book Goodbye Daisy showing a picture of daisy smiling while sat in her wheelchair with her arms outstretched

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.

When Life Gives You Lemons: Rosie Jones


A few weeks ago I attended the Women of the World festival in Norwich.  I took part in a panel about how the role of caring often falls to women and  I also shared my story and the lessons it has taught me on the final day.  I got to meet lots of lovely readers and signed copies of my book.

I stayed with my great friend Helen Linehan.  She was also talking at the event as part of a panel about women in the media (Helen co-wrote the BBC comedy, Motherland).  On the first night of the event the team from the incredibly successful and influential Guilty Feminist podcast were recording two live podcasts, the first was a focus on the Repeal the 8th vote .  Helen took part in that session and shared her very moving story about discovering that her first child with her husband Graham, had a fatal foetal abnormality.

The second podcast of the evening featured the comedian Rosie Jones.  I got to spend some time with Rosie in the Green Room back stage and as we chatted it struck me that she was a perfect candidate for the WLGYL series on the blog.

For those of you who don't know her, Rosie is a successful comedian, she also has cerebral palsy, she also recently came out as lesbian.

I loved meeting Rosie, we had a really good chuckle about our mutual hate of so called inspiration porn.  She's incredibly funny and if you are going to the Edinburgh Fringe later this summer make sure you go and see her show Fifteen Minutes.  Rosie explains the significance of fifteen minutes in this interview...



picture of rosie jones in a pink dress with a wide smile, she has her hands on her hips



It's never about giving up

Palliative Care. It's been in the news a lot this week.  And as I've seen yet another case of a child who needs a referral to palliative care being played out on social media I realised how little people really understand by the term.

All this week I have seen the negativity associated with the words and it has shocked me.  Because the perception that those people on social media had on social media bore no relation to the reality we had experienced.

We knew from the beginning that Daisy was life limited.  That she would not reach adulthood.  She was born with a sporadic gene mutation that increased her risk of cancer, sudden cardiac events, complex disabilities.  We know that many of the children with the same mutation do survive to adulthood, there are some who are in their forties even.  But Daisy was always going to be different.  She seemed to have an extreme form of the syndrome, potentially a secondary undiagnosed syndrome at play.  It was clear that there was too much going on and too much need for constant medical intervention to be conducive to a long life.

Andy and I accepted that from the offset.  We knew our time with Daisy was finite.  We were just determined to make the most of our finite time with her.  And that's where palliative care was so important.

Daisy was referred to the hospital palliative care team when she was seven.  I, like many others, assumed that palliative services were only brought in at the end.  I now know so much more.  That early intervention by palliative services was crucial, it contributed to ensuring that we were able to focus on Daisy's quality of life.  In fact the words used regularly by the consultant caring for her were "symptom control".  Daisy's pain was getting out of hand, she was on so many drugs it was difficult to know what was a drug side effect and what was pain.  With the help of the palliative consultant we were able to wean Daisy off some of her drugs so that we could identify which were the most effective in treating her pain.  A symptom care plan was developed so that everyone caring for Daisy understood what medication and doses were available and how to escalate them.

Some nights at home when I struggled to control Daisy's pain (her pain was always so much worse at night) there was always a member of the palliative team on call who could advise me.

We discussed our priorities for Daisy.  Optimising her time at home, minimising her time in hospital, maximising her quality of life and preparing plans to ensure that when the time came we would know and we would be able to support her in having a dignified death.

We made it clear that we wanted to ensure that Daisy was able to do the things she wanted to do; go to school, spend time with her family, be a little girl.  With her team we decided that as the window of Daisy being able to do the things she wanted to do closed we would constantly assess the situation.

I look back now and we did exactly that.  Daisy's deterioration was slow but it was obvious.  She lost the ability to walk, she developed severe seizures, her ability to communicate was reduced, she became more and more lethargic but this happened very slowly over a prolonged time frame and with the help of the pallitiative care team both at the hospital and the hospice we were able to support Daisy and optimise her quality of life.

Any procedure, test or surgery was always decided against the main criteria; "Will this improve her quality of life".  She had a couple of big surgeries in her final years, I know that there were discussions at an ethics panel about whether it was right to put her through more major surgery.  In the end we took the risk, her final surgery, while Andy was still alive, made a huge difference to her pain and we were glad that everyone agreed it should go ahead.

We talked about end of life plans.  These were always very open, frank discussions.  The doctors could not give us answers about when she would die or how, they did not know themselves.  She was always defying the odds, she would be overwhelmed with sepsis and we would prepare for the worst and then she would turn the corner.  We knew what all the options were however.  We allowed ourselves to think of the end of her life so that when it came we would be prepared and know what we wanted for our girl.

The irony was that those conversations with the palliative care team were even more important because it enabled Andy and I to be on the same page about how we would support Daisy when she was at the end of life stage.  We both agreed that we would not go down the route of a tracheostomy for her if that was the only option, she was already dependent of 24/7 intravenous nutrition to live and had four other stomas beyond her double lumen hickman line.  At least after Andy died of cancer just before Daisy's 11th birthday I knew that we were both in agreement and these things had been discussed.

Daisy's health deteriorated rapidly after Andy died.  That window of life quality I had discussed with our consultant was closing.  I remember the Christmas before she died, I just wondered how much we were now playing God.  She was struggling to keep going, her frustration was manifesting in challenging behaviour, she was becoming tired, she was losing more and more of her skills, we were losing Daisy.

When Daisy was taken into intensive care overwhelmed with sepsis it was still difficult to see that this was the end.  We had all seen her turn the corner from this point so many times.  But this time was different.  Everything the doctors tried did not work.  They had worked before.  She was struggling and exhausted.  She was sedated and a breathing tube was put into her lungs and she was attached to a ventilator.  I hoped that it would allow her body to rest and fight the sepsis.

But then her heart stopped beating and as I ran into her cubicle to see the doctors performing CPR on her I knew that I had to let her go.  I knew Andy would say the same.

I asked the doctors whether we could transfer Daisy so that our hospice team could come and switch off the ventilator at home.  I knew from previous conversations around end of life plans that compassionate extubations could happen at the hospice so why not at home?  But she was too unstable, she risked  dying in the ambulance en route.  This was not what I wanted.

The doctors successfully started Daisy's heart again but I knew that she was gone.  They talked to me about starting dialysis, about other life support interventions but I knew that our window had finally closed and it was time to say goodbye.

 I let my girl go.

It was the hardest thing I have ever had to do but I know that despite the fact that we were in a hospital, in a highly medicalised setting, we gave Daisy a good death, she was surrounded with love, we had given her everything we possibly could, we had left no stone unturned in ensuring she had the best life possible.

Our palliative nurse was with me when Daisy died.  We had known her for many years.  She helped the other nurses remove the medical equipment, she liaised with the hospice and the undertaker, she knew what to do .

Daisy's palliative consultant cried.  Just like many of the nurses and doctors who had cared for Daisy over the years they had got to know the little girl beyond the patient and they were as devastated as we were.

Daisy was moved to the bereavement suite on the ward and nurses came in and helped me wash her.  That evening we went home .  Our hospice nurse had set up a cold mattress on Daisy's bed and when the undertaker arrived they tucked Daisy back into her bed for one last time.  She was home.

Palliative care gave my daughter a good death.  It gave us options.  It gave us support and most importantly it gave us the gift of time with Daisy.  I accepted her life was limited, deciding to no longer pursue active treatment unless it was to enable her to have a good quality of life was empowering.  It was never, ever about giving up.

I have shared our story because I have realised that there are so many misconceptions about children's palliative care.  The reality is sometimes there is no cure and children die,  sometimes doctors do not have all the answers, sometimes medical science can only go so far.  It's about time we had more open conversations about these issues.


When Life Gives You Lemons: Danny Germain

Here's another interview as part of my When Life Gives You Lemons series.

 I've known Danny and his family for many years.  Danny's step-mum, Marion, was one of Andy's closest friends and he turned to her for coaching support to help him with the mental strength he knew he would need when he was diagnosed with cancer.  Marion was also one of Daisy's Godmothers.  Danny was a small boy when we first met him and it was years before we were entrusted with the secret that Danny had carried with him since he was little.

Photo of Danny Germain smiling at the camera


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.

Steph with her head on Daisy's head as Daisy recovers from a general anaesthetic in a radiology suite with lots of medical equipment in the background
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.

picture of daisy age 3 holding out her arms to be picked up, she is wearing a white party dress and smiling


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.


picture of steph smiling at daisy who is dressed as an angel with tinsel in her hair
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.

When Life Gives You Lemons : Janine Osborne


I have known Janine (aka: Jin, Mrs Bowring, JOB) since the day after she was born!  

My family lived next to her parents in Wales and when her mum brought baby Janine home from the hospital I was one of the first to have a cwtch.  Janine and her sisters Hannah and Caroline are like little cousins to me and while not officially family are definitely part of my welsh family.

Janine's life has had it's ups and downs and I was so happy for her when she met the love of her life, Matt. Diagnosed with a really serious disease that nearly cost her life, Janine fought back, determined not to let it beat her just as her life was going so well.  Beat it she did and while still having regular chemotherapy treatment to keep the symptoms of her rare disease at bay she dedicates her time to helping other people battle through illness while also raising funds and awareness for many charities.  

Only Janine could spend her honeymoon climbing mountains in her wedding dress, such is her determination that her illness will not rob her of the the best years of her life/

Janine on her wedding day, a few days later she was climbing mountains wearing the same dress!

The Multi-Disciplinary Meeting


I was 36 when Daisy was born.  I already had seven years of parenting under my belt.



I was acutely aware that in many ways I had so much more in my favour than many other parents embarking on the journey of caring for a complex child.  I was probably closer in age to many of the professionals treating my daughter over the years, I had reached a high level of academic attainment in my own chosen field of expertise, I spoke fluent english and I had the support of one of the best management development coaches in the business, my own husband.  I knew how to negotiate, I knew how to manage complex projects.   

Yet despite all of that, entering a room full of professionals who were all gathered to discuss the fate of my child was one of the toughest things I have had to do.  Nothing in my previous life could prepare me for it.  I felt disempowered and vulnerable.

When Life Gives You Lemons: Debs Aspland


When Life Gives You Lemons is my blog series profiling some of the incredible people I have met during my journey.  People who, like me, have faced adversity but refuse to be defined by it.

Next up is Debs Aspland.

I first met Debs very briefly in 2012 when we both attended the Britmums Brilliance in Blogging Awards.  We bumped into each other again a couple of years later when were invited to meet with and give feedback to the Minister of State for Children and Families.  However it was over drinks on the Southbank that I really got to know Debs and recognise her for the kindred spirit and fellow warrior she is.  She definitely shares my rebellious streak and I couldn't wait to ask her to be the subject of an interview for my When Life Gives You Lemons series.

head shot of Debs Aspland


Mothering Sunday

So here it is, another Mothering Sunday. The second without Daisy.

I was asked this week what I say when I am asked how many children I have?  Always four, I always will have four children, I replied.  She may no longer be here but she will always be with me, every single day.

picture of steph with Daisy when she was about 3, wearing a pink cardigan

Mother's day is hard.  That day when we celebrate motherhood.  We all have mothers, some of us are lucky to be mothers or to have made the choice to have children.

I always wanted children, just not straight away.  I'm so glad Andy and I waited for a few years.  I'm so lucky that I met him when I was young so that we were able to have that time together, to cement our relationship, BC – before children.  It seems like centuries ago, a completely different world away.

When Life Gives You Lemons: Lucy Watts MBE



-->
I'm delighted to launch a new series on my blog today, it's called When Life Gives You Lemons.  Over the years I have had the pleasure to meet and get to know some incredible people, many of whom have faced adversity and have decided not to be defined by this but instead to seize the day and make the most of their situation.  Andy would always say "When life gives you lemons, make lemonade!". It as always been the spirit by which I have chosen to live my life so I thought it was about time I shone the spotlight on some other people who are also making lemonade.

Today I would like to introduce Lucy Watts MBE.

 I first met Lucy online about 5 years ago and got to meet her face to face in 2014  I was speaking at an event for the children's Palliative Care Charity, Together for Short Lives and Lucy was there also with her mum Kate in her role as a young ambassador for the charity.  We have stayed in touch ever since and I am so glad that she was also able to meet Andy.

Lucy in Trafalgar Square with her assistance dog Molly

How did I do it?

A year ago I woke up and gathered every last shred of strength I could muster to get out of bed.  I did my hair and makeup and put on a bright cerise dress, pinning a large pink daisy corsage to the front.

I was going to have to do it all over again, a year after I had delivered a eulogy at my husband's funeral, I was preparing to speak at my daughter's funeral. 

steph wearing a pink dress releasing a dove into the sky
I released a dove at Daisy's funeral

My poor children were once again going through a public mourning. I look back on the footage of Prince William and Prince Harry walking behind their mother's coffin and I can feel their pain.  My children did that twice, in the space of a year they faced the funeral of their father and then their sister.

And then she was gone



picture of daisy in minnie mouse ears


You were here and now you are gone and my arms ache for you.

Did I do enough?

Did you know how much I loved you?

Did I spend enough time just being your mummy?

My lovely girl.  My Daisy Rose.

picture of daisy when she was 7 at the hospice


I miss you so much.  We all miss you. We miss your voice calling for us, the way you chose which sibling would have a hug depending on what you needed them to do for you.

I miss our cuddles, our special times together.  Chatting to you and telling you funny stories to keep you entertained on the endless trips to hospital for appointments. Singing together as I set up your infusions.  Answering your endless questions.

I avoid the shops you loved, it hurts too much to remember your request for shopping, for money, for big girls clothes, for a new toy....

I talk to you a lot, I dream of you a lot.  I wave to you in the stars.

picture of daisy in a pink garden chair smiling and waving at the camera


The house echoes with emptiness.  The silence is deafening.

When you died I switched off your beloved ipad, with all your music and TV shows and games and photos.  I have not switched it back on since.  It still has your fingerprints.  Tomorrow I'm going to turn it on again.  Once more the house will be filled with your soundtrack.

I'm reliving every last moment. It pains me that you were in so much pain at the end, that you were poked and prodded in your last hours.  But we didn't know.  We had been so close to the edge so many times, every time you let us glimpse into the abyss then you turned the corner and came back.  This time you didn't, I knew you were so tired.  You had been tired for so long.  Since daddy died.  your beautiful spark was gone and you tried so hard but it was all such an effort.

Daisy sitting on a stairlift in a pretty dress holding a pink rucksack


And I knew, at the end, it was time to let you go.  And much as I hate the thought that your last hours were filled with fear and pain I am glad we were able to reclaim you and bring you home again. Bring our girl home just as you asked.

I hope that you knew how much you were loved.  How we made sure that we fitted in a lifetime of memories into your 12 years.  We did so much, everywhere I go in London there is a memory of a place we went together, time spent together, precious time.

Daisy playing with lego and cuddling pluto her dog

I always knew our time was going to be short, I could never imagine that we would have the gift of twelve years with you.  Yet I want more, just a last hug, to hold you in my arms, to feel your little curly head against my cheek.

I hope I did enough, I hope you were happy, I hope you knew how much you were loved.


Steph holding a glass of champagne and daisy looking at it




I was so lucky to have been your mummy.

xxxxx

22/12/04 - 31/01/17

#rememberingdaisy
#wasthisintheplan










Pre-order my new book

”related