Vaccinations: More important than ever.

I found myself in a curious situation this week when I actually agreed with  Donald Trump:

"They have to get the shots. The vaccinations are so important. This is really going around now. They have to get their shots," Trump told CNN's Joe Johns on Friday when asked what his message is for parents

I'm staunchly pro-vaccination for many reasons and have constantly put my head above the parapet to explain why.  I wrote a blog post in 2013 explaining the reasons why I choose to vaccinate and expressing my frustration with those who choose not to.  At the time Daisy was still alive, Andy did not have cancer.  I was trolled online by the anti-vaxx community and whenever I reiterate my case I am trolled by them.  I don't care, really I don't, I stand by my beliefs and even more so.

So, to recap, for those who have never met me and don't know my blog and my story;

I am a measles survivor.  I was not vaccinated, when I was born the measles vaccination, while widely available, was not commonly given.  I developed measles at the age of 4, it's one of my strongest early childhood memories, of being terribly ill at home, in a darkened bedroom, unable to bear bright lights.  I was lucky, the only lasting damage is that I am now completely deaf in my right ear.  

It's a pain in the ass, and as my audiologist told me, it would have been easier if I had lost 50% hearing in both ears, they can do something about that rather than 100% hearing in one ear.  But it's a minor inconvenience compared to what might have been.

Just a few months after this picture was taken I developed measles

Roald Dahl wrote so movingly about the death of his daughter from an often fatal complication of measles, measles encaphalitis, swelling of the brain.  Measles can, and does kill.  Dahl's daughter was otherwise healthy, in a child or adult with an other health issues it's a potential death sentence.

Our memories are short.  Medical science has made us complacent. We expect to survive, we expect the medics to make things better, and when people do not get better there is almost a sense of shock and disbelief.

Just before Christmas, 2004 I gave birth to my fourth child.  A little girl called Daisy.  She was born two month's prematurely.  I had been very ill when I was pregnant with her.  Thanks to excellent ante-natal and neo-natal care both Daisy and I survived.  

Daisy had a very rare genetic disease which caused her entire gastro-intestinal system to fail.  Alongside multiple surgeries to remove most of her colon, she had to receive all her nutrition intravenously, via a catheter embedded into a vein.  She also spent most of her life on powerful immunosuppressants and steroids to control the severe inflammation in what remained of her gastro-intestinal system.

Medical science gave Daisy life and it gave us hope.  With her complex regimen of drugs and intravenous infusions Daisy was able to enjoy life.  Had she been born even ten years previously she would have died in her first year.  But this all came at a cost.  She was susceptible to infections, she had many hospital admissions for sepsis, caused by bacteria colonising her multiple catheters and indwelling lines.  This was a risk we were prepared to take because when Daisy was stable she had a good quality of life and was able to go to school and enjoy family time.

Daisy could not receive live vaccines however.  She had a compromised immune system which meant that vaccinations were contraindicated.  But this also meant that she was at risk of contracting infections.  She had shingles and chickenpox on multiple occasions.  In Daisy these were severe infections, landing her in high dependency,  If there was a chance she had come into contact with a child who was infectious with chickenpox then Daisy would have to have a preventative medication via a very large and painful intramuscular injection.  My biggest fear, however, was measles.  Remembering how I had felt and knowing how the virus had affected me, an otherwise healthy child, I knew that measles would kill the daughter I had fought so hard to keep alive.

I didn't worry too much however, I mean, we had eradicated the disease in the UK, you just did not hear of children having measles.  Measles, mumps, whooping cough...all diseases of another generation, a distant memory, we were safe.......medical science had solved the problem...

......Until slowly a movement began to grow, parents who decided that they did not want to vaccinate their child....and  cases of measles began to rise. Prompting my original blog post.  I just could not see why people would not want their children vaccinated, after all I lived with a child who could not be vaccinated and I knew the fear that it brings.

But the anti-vaccination movement has got bigger and bigger, and alongside that growth my life has my life changed dramatically.

Daisy died, at the age of 12, in January 2017.  She died of sepsis.  Years of antibiotic and anti-fungal treatment for infections had meant that she was colonised with multiple drug-resistant bugs, on top of that her cardiomyopathy was becoming worse and her heart failing.  The bottom line was that it was her time and I had to make the decision to stop life support and let her go.  I knew that medical science had kept her alive and I knew that we were lucky to have had twelve wonderful years with her.

Medical many ways the progress we have seen over the past decades has sanitised us to the realities of what life was like without the drugs and treatments that kept Daisy alive.  Daisy would have died within her first year, I potentially may not have survived her birth.  That's what medical science meant for my family.  Now children are surviving , people are surviving and it's easy to take for granted that what is survivable now was fatal a generation ago. 

The year before Daisy died, my husband, Andy died of cancer.  He had been diagnosed the year previously.  He was stage four on diagnosis.  There was no cure.  But immunotherapy treatment and brutal chemotherapy together with experimental radiotherapy gave us a year as a family.  It also wiped out Andy's immune system.  Suddenly I had two family members, both terminally ill but also at huge risk if dying before their time if they contracted measles.

Daisy and her daddy

I hear the arguments from the anti-vaxxers; there are still people who believe in the flawed and disproven Wakefield research that links autism and the combined MMR jab.  I understand the fear of parents of babies faced with multiple viewpoints.  Maybe I would have been one of those wavering parents, despite my deaf ear, as a parent you are overwhelmed with all the information and the burden of making decisions for your child that could massively change the course of their life.

I  do not believe that vaccines cause autism, 100%.  I am the parent of two boys on the autistic spectrum.  They were vaccinated, the vaccine did not cause their autism. I hear the cases, people write to me, but the reality is that there is absolutely no scientific evidence that there is a causative link between the MMR vaccine and autism. The causation that I have been presented with is tenuous and flawed.

However I also do not believe that vaccines are 100% safe.  What? I hear you cry! I thought she was pro-vaccination?  I am, but the reality is that nothing is 100% safe, when we make a decision on behalf of our child we are taking a calculated risk.  And I have had to make decisions that no parent should ever make for their child; decisions that make the vaccine decision pale into insignificance.

And yes there are cases of vaccine injury and side effects.  Like every single drug, from the contraceptive pill to aspirin you are taking a calculated risk when you decide to take it.

When Andy signed the forms for cancer treatment he knew that there were risks, not only that the treatment might not work but also that the side effects of the actual treatment could potential hasten his (inevitable) death.  Ultimately it was the rare side effect of the experimental radiotherapy treatment that set in train events that lead to his death.  Yet Andy still stood by his decision, at the end of his life he was glad he had given it a shot.

Andy was able to make that choice for himself but as parents we have to make choices for our children.  And the luxury to choose to vaccinate is an early choice and dilemma for all parents, so I would ask you to consider this:

What if you did not even have this choice? How lucky are we to live in a world where we can prevent these diseases rather than hope that our child is not one of the unlucky ones.

And then there is the question of the herd immunity to consider.  To ensure protection of the most vulnerable,  95% of people who are able to be vaccinated against a disease need it in order to ensure that those who can't are not placed at risk.  What if you were one of the ones who could not?  What if you had sat at your child's bedside waiting for a bone marrow match? A new set of lungs? A new heart? Knowing that the powerful anti-rejection drugs meant that although they would have the gift of life that life would be spent vulnerable to contracting fatal infections because they could not receive vaccinations?  What if you were the parent of the child who had died and you had made the decision to donate their organs?  What if you had been me, a few years ago, fighting tooth and nail to keep my child alive, knowing I was pouring toxic drugs into her just so that she could do the things she wanted to do, go to school, play with her siblings, but always living in fear as I heard about a new measles outbreak in my area.

And when you were pregnant with your child, what would have happened if you had been exposed to measles, mumps or rubella while your child was in the womb causing disabilities and issues they, and you, would have to live with for the rest of their lives?

Last time I wrote about this I was told that it was not about the wider community, or other children, parents messaged me that all they cared about was their child.  I was given information about children being diagnosed with autism,about immune systems being overloaded with toxins, about vaccines containing mercury......

Some of the drugs used to keep Daisy alive were so toxic they made her hair fall out.  I chose, as Daisy's mum, on her behalf, to put my faith in science, despite everything, the side effects, they gave Daisy time.  That decision did not come easily and I can empathise with every new parent who is now being bombarded by a powerful anti-vaxx lobby.  But remember, this is parenting, these decisions are tough but think about it another way, what if your child was diagnosed with leukaemia?  The survival rates for this blood cancer are now high, many years ago it was fatal, but the treatment is still not guaranteed and the side effects can last a life time.  Would you still agree to the treatment for your child?  As I see it that decision has far greater risks than the decision about whether or not to vaccinate.

Parents will find all sorts of pseudo-scientific reasons for why they choose not to vaccinate; overloading their child's immune system, heavy metals and toxins in the vaccines....again, just try and make life and death decisions about your child when they have a rare genetic disease and are not likely to live to adulthood.  Then you worry less about the pseudo-science and more about whether you will get a few more years of time with your child.

I know that for many anti-vaxxers whatever I write and say they will never be swayed, I will be bombarded by their evidence and papers to justify their decisions but there is one group who can have a voice.  Those children who were too young to decide whether or not to be vaccinated, whose parents decided for them.  They are growing up now, becoming teenagers, young adults.  They can make their own decisions.

In the UK young people aged 16 can ask to be vaccinated without their parents knowing and thanks to Gillick Competence this can occur at a younger age if their doctor deems that they are competent to make their own decisions.  If you are a young person who was not vaccinated and is now aware of the pros and cons, you can ask to be vaccinated, it's your decision and your risk entirely.  If you decide to be vaccinated you will be protecting yourself and you will be protecting those around you who are vulnerable and cannot be vaccinated.

And lastly, if you are the parent of an unvaccinated child, please do not expose other vulnerable children to preventable diseases of childhood.  If you suspect your child has been exposed to measles, mumps or rubella keep them away from the community, do not send them to school, keep them at home.  If they do develop the diseases I really hope that your child survives, I really do.  As a parent who watched her child die I would never wish that experience on anyone.

To be a mother

 I always wanted to be a mother. It was a choice I made and a choice that came easily to Andy and I , we know how very lucky we were to have been able to even have that choice.

Four children, each journey with them so different.

When Theo was born I assumed that babies just cried all the time and didn't sleep. Now I know that he has disordered sleep as a result of his ASD diagnosis.  Sleep....I remember wondering if I ever would sleep properly again.  With three children under 7 and heavily pregnant with Daisy I lay awake at night, my skin burning with the obstetric choleastasis that I developed in pregnancy, hoping that this last baby would be a good sleeper.

Of course Daisy took the art of not sleeping to the extreme, eventually needing a huge cocktail of drugs at night to help her sleep.  I lay in bed listening out for her, crying for mummy, a seizure or a cry of pain....

And now, I still can't sleep, now I have older children, my body and mind still listen out for them, and still I wake at night, this time to silence.

They needed me all the time, I wondered if I would ever have time for me again, that there would ever be time when I was tending to the needs of a small person, all needy, in their own little ways.

And now the most needy one is no longer here and the my others don't need me.  It's the time I wanted, time to myself.  But when you have spent half a life time being needed, putting your child's needs before your own, it's difficult to know what to do.  But they do still need me, not in a physical way, just to be present, to be available when late at night, my eyes heavy and wanting to go to bed they decide they need to talk, they need to know I'm there, the anchor, even when they are not here.

Empty nesting, it's very real. One in University, fiercely independent but yet indignant that she can't track my whereabouts on her phone, one working full time, who still likes to tell me about his life and plans, and one making plans for a new college course, needing me to buoy him against the crippling anxiety he feels. 

Motherhood never ends, it just changes. It changes you, each stage so different, that umbilical cord is still very much attached.

Even when they are not here. I am and will always be Daisy's mother.  I will always be their mother.  The mother of four, very much wanted and loved children. 

My body knows this, the folds of loose skin on my stomach the visible signs of the severe polyhydroamnios which were the first sign that something was not right with my last pregnancy, my chronic insomnia from nights awake worrying about them.

I'm still learning, this new stage, as a mother of older children, as a bereaved mother, I am learning what this means.

I glow with pride as I watch them make their way in the world, independent, resilient, determined.  As I remember my beautiful Daisy and the mother she made me, the love she gave me.

Mother's Day is always hard.  It was a choice I made, it was never going to be easy, motherhood is not easy.  I seem to have travelled a harder path but I wouldn't swap it for the world.

As always I send my love to those who so want to become mothers and can't, to those who are mothers but can no longer hold their children and to the mothers like me who continue to make it up as they go along!

Please don't tell me they passed away

I live next door to the local church and often take in parcel deliveries if there is no-one available at the presbytery to sign for them.  The other day I called over to drop off a box that had been left at our house.  A new priest answered the door, there has been quite a turn over of priests in the past few years so he didn't know me, that I was a neighbour , and I think he assumed I was the Amazon delivery person!

black and white picture of Daisy and Steph lying in bed together with Steph gazing lovingly at her daughter
We told Daisy that "Daddy died" so that she knew that he would not be coming back.

"Hi, I'm Steph" I said "I'm your neighbour, I'm also part of your parish" This is technically true.  I was until a few years ago still a practising catholic so I explained to him that I no longer go to church and he asked me why that was.

"Well, you see father" I explained "my husband died of cancer and my daughter died the following year. They both experienced a lot of pain and I have to question why a benign god would allow particularly my daughter to endure so much pain and hardship in her little life. I can't fathom it"

I know, I could have just handed over the parcel and not said anything but I was feeling quite bolshy that day and I thought it might be an opportunity for a good theological debate and maybe he might have had an argument that could have challenged me.

"They are both in a better place" was his response.....

Needless to say I didn't hang around to chat further (in fact he told me it was his day off and if I came back when it wasn't we could have a conversation about my faith, or lack thereof).

This blog post isn't about faith however. I have huge respect for people of all faiths and none, anyone who knows me, knows that and I would not seek to challenge someones beliefs, we all come to our belief system via our own path. No, what really set my teeth on edge was that phrase "they have gone to a better place"....does that mean that I'm in a rubbish place then? Does it mean that life on earth is really that bad for my family left behind?

I like direct language and communication, living with two boys on the autistic spectrum has taught me that nuance can lead to confusion.  Until Andy died I always avoided the words "passed away". I was brought up in a family where we referred to people dying, we did not use metaphors or euphemisms.  But increasingly I found myself saying that he had passed away, I even used it in blog posts and I began to question why someone who was so direct in their speech was using this indirect term to describe what had happened.

I realised that what I was doing was mirroring other people's language in order to protect them, to soften the blow.  People continue to be so taken aback and shocked when I tell them that my husband and daughter died, using words like passed away seemed to take the edge off it.

But it's wrong.  Well for me it's wrong.  Andy and Daisy died, they did not pass away, I choose to use the language of death and dying and so I'm not being honest with myself when I don't use that language in describing what has happened to me .

It's a symptom of our attitude to death and dying, to the taboo that surrounds it, by refusing to name what has happened, by speaking in code are we almost in denial?

I try and lead by example, I speak very openly about my story, I share many (but not all) of the details because I want to re frame the narrative around death and dying.  As I always say, it is the only guarantee we have in life.  I want people to know that it's alright to talk to me about Andy and Daisy and to do that I need to be open and give them the language to use.

Andy and Daisy did not lose their fight, they did not put up a battle...this implies they failed in some way.  They succeeded in my eyes by really living, that's what I want people to focus on.  Yes it's absolutely rubbish that they died young but they did not fail some sort of test and lose, they just died. And sad as it is, sometimes people die when we don't expect them to, sometimes they die before they have had time to do all the things they wanted in life, and that sadly is the reality.  We really need to stop hiding behind euphemism to soften the blow and maybe just face it head on.  Because in accepting that sometimes people die young we can focus on making sure we get on with life and wring every precious drop we can out of it.

You may use the term passed away, but if you do, own it, don't say it to make the other person feel better, that's the difference.  And please don't refer to people losing a battle, especially when they have cancer or an incurable disease, this is not a competition, it's just a sad truth that sometimes people get better and sometimes they don't .

Life sucks like that, it can throw you off course in the most unimaginable way so all the more reason to grab it and make the most of that finite time we have on this tiny speck of a planet in the infinite universe.

(Quick plug for my book Goodbye Daisy, a unique resource to support children, their parents and professionals through their grief when a friend or loved one dies, I even refer to Daisy dying in the children's story section of the book, children with learning disabilities need clear language otherwise it can open up doubt and confusion)

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.

Steph wearing glasses and holding a notebook looking to her left as she speaks to an audience
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 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!


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 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.