Make 2020 the year you write your Living Will

I love lists. Ask my children. There are lists everywhere in the house. On the blackboard in the kitchen, on the whiteboard in my office. Christmas sends me into list frenzy and our family group chat goes into warp drive as I share my to do lists with the kids.

I end my work day with a list in my project book and every year I write down the things I'd like to achieve. Not resolutions, but things I'd like to the cycling holiday to Jordan I've just booked, it's been on my list for a while....

But, because I'm a woman of contradictions, I'm a procrastinator too, and sometimes things stay on my list for a while...I know I need to do it...updating this blog has been on the list for  while ...along with the great big elephant in the room.

I need to write my Advance Decision document.

These days much of my time is spent talking to people about talking.  About having difficult conversations, about sharing plans and opening up and talking about the most taboo of subjects...death and dying.

I share openly my own experience of caring for my life limited daughter Daisy, making plans and discussing with her palliative team how far we would go with medical interventions.  Similarly I talk about how we dealt with my husband, Andy's, terminal cancer diagnosis and how we prepared for life after he died, how he made me the legacy contact for his social media accounts and shared his passwords for his bank we spoke about his wishes for end of life and medical intervention.

And I share how I was able to give both my daughter and my husband a good death; advocating for them at the end, knowing that we had discussed end of life plans. And despite Daisy's death being medicalised how I felt that at the end I made the right decisions for her and how I brought Andy home with the support of the palliative team for his final days......

I've altered my will as our circumstances changed, I've sorted out life insurance and I've discussed what sort of funeral I want with my children and which undertaker to use . I've made my eldest son my social media legacy contact and he has the passwords to access my digital life...

But what I haven't done, what I know I need to do, is formalised my wishes for end of life care.

Why should I?  It's not like I'm going to die anytime soon after all?

At this point I refer you to the title of my blog, because I know more than most that life can have an uncanny habit of throwing you off course, who knows what it has in store?

Celia and Jenny Kitzinger are sisters who, like me, also have a vested interested in encouraging people to open up and talk about death and dying.  We have found ourselves speaking at the same conferences and through them I have got to know the story of their sister, Polly.

Polly was a similar age to me when she was involved in a terrible car accident which left her with devastating brain injuries.  The family knew from conversations they had with Polly before the accident that she would have preferred not to have had the medical interventions that kept her alive, initially in a persistent vegetative state and subsequently in a minimally conscious state .  The family told the doctors who were caring for their sister that she would not want life-prolonging treatment but despite showing evidence through Polly's writing and letters that she would not want to be kept artificially alive, the doctors persisted with treatment.  And 10 years later Polly still needs 24/7 care and it's unlikely that she will ever be able to make a decision for herself again.

Jenny and Celia have campaigned tirelessly to open up the conversations about the need for everyone to make an advance decision and to communicate it.  In fact medical professionals are expected to talk to family and friends in order to make a "best interests" decision but it really becomes a lot simpler if there is an advance decision document in place, because it's something that you have thought of, when you had the mental capacity to do so, and most importantly, it's legally binding.

Because just telling your spouse, next of kin, friend to "switch off my life support if the worst happens" isn't as easy as you think, as Polly's case illustrates.

Until I had met Jenny and Celia I had always assumed that an advance decision or "living will" was something for older people, something that I should discuss at some point with my parents, along with who was going to be the lucky recipient of an extensive collection of crystal vases and seaside mementos. But now I know (as I should have realised) that everyone over 18 should write an advance directive if they have strong opinions about what they do or don't want to happen to them should the worst happen and they cannot speak for themselves.

I was lucky, cancer gave Andy and I time to discuss things, make plans , to think about resuscitation and end of life care but a sudden devastating event; a car crash, a stroke , doesn't give you that luxury.

So sorting out my advance decision document and getting it witnessed has been on my to do list all year.  Not long after hearing the Kitzinger's speak for the first time I was involved in a minor accident that left me with concussion and the realisation that I was actually not infallible or immortal, none of us are. The only guarantee we have in life is death after all.

So, what is an Advance decision and how do I make it?

It lets your healthcare team know your wishes if you are not able to communicate them. It's a legally binding document and informs your family, friends and the medical team with your wishes for refusing treatment if you're unable to make or communicate those decisions yourself.  You can find out more information about Advance decisions here.

Creating an Advance decision takes time, it involves difficult conversations with family members, and the need to really think about what you do and do not want for your end of life care.  I think that's why I've been procrastinating so much, it involves me going to a place that I encourage everyone else to go to, to think about my mortality and ultimately what for me constitutes a good quality of life.

Compassion in Dying have an excellent form on their website which guides you through everything that you would need to consider in drawing up the document and what to do once you have written it.

It's all relative, there are no rights or wrongs, no judgements, it's just about planning ahead and ultimately making things easier for those who are going to have to make decisions on your behalf should you for any reason not have the mental capacity to do so.

It's not something I will enjoy doing and hopefully it's a document that won't ever be used (but I will definitely be revisiting it to make sure it's still what I want) but it's got to be worth a few hours of my time.  If the worst did ever happen to me I would want to know that my kids have some guidance from me to carry out my wishes.

So if you are making a list for things you would like to achieve in 2020 here's my suggestions:

1. Sort out your legacy contacts and passwords for your digital/social media accounts
2. If you have children who are still in education or you have outstanding debts sort out life insurance
3. Write your will
4. Discuss your funeral wishes with your family
5. Fire up the Compassion in Dying website and sort out your Advance Decision (Living Will)
6. Decide who will be receiving the collection of whimsical figurines that you have been amassing since childhood.... (OK, this one's not obligatory).

Wishing you a procrastination-free 2020

Hospice UK Conference Talk

Last Friday I was honoured to be invited to speak at the Hospice UK conference in Liverpool.  I was interviewed by Tracey Bleakely, their CEO and the result is nearly forty minutes of video covering everything from life adjusting to caring for a disabled child, paediatric palliative care, end of life planning , supporting young carers, anticipatory grief and grief.

I think the interview gives some really useful insights to health professionals, carers, parents and anyone interested in knowing what it's like to have to suddenly change your life when things don't go according to plan!

Please share the link with anyone you think might be interested.

And thank you to Hospice UK for inviting me to such a brilliant event!

My speech to the Institute of Medical Ethics

A few weeks ago I was invited to deliver a memorial lecture at the Institute of Medical Ethics.

For the benefit of those who were unable to attend, here it is:

In January 2017 my daughter Daisy was admitted onto the intensive-care unit at Great Ormond Street for the last time.  She was put on a ventilator and it was clear that she was septic and her organs were beginning to shut down.  She had a cardiac arrest as the physio therapist performed a bronchial lavage in an attempt to identify the bug that was causing such havoc.  I walked in on the crash team working on her.  

It is possibly the worst thing I have ever seen, my little girl, just a few weeks past her 12th birthday, limp like a rag doll as the crash team performed CPR.  They brought her back but it was clear that this time, unlike all the other times, Daisy was not going to leave PICU.  Doctors and nurses worked on her constantly.  The consultant took me to one side and told me what I already knew, the Daisy I knew would never come back, there were options, they could start dialysis, they could keep resuscitating but the outcome would be the same, all it would do was buy time.  I already knew the answer.

A Family Reunion

"Find your tribe", it's the advice I give the many parents of children with additional needs who contact me.  It doesn't matter if you child has a confirmed diagnosis, you need to find people who "get it", who understand what it's like to live 24/7 with a child who has taken you for a ride on the extreme parenting roller coaster.

We were lucky (I'm ever the optimist), Daisy received a confirmed diagnosis of Costello Syndrome when she was 6 months old.  At the time she was one of the first children in the world to be tested for the sporadic mutation on the hras gene which causes the syndrome, at the time we were told that it was so sporadic the chances of having a child with Costello Syndrome were 1:1.25million.

Lucy's Light: Podcast Interview

I was recently for my friend Lucy Watt's podcast.  You will know her from my When Life Gives You Lemons interview.

Lucy and I have known eachother for many years now and it was like talking to an old friend as I openly shared my personal experiences of what it's like to be a carer and my tips for anyone who finds themselves in a caring role for a family member.

The Children's Hospice Crisis, part of a bigger problem....

It was my birthday this week, another turn around the sun and another year I'm grateful to be alive and brimming with plans.

But instead of enjoying a lie in and breakfast cooked by my chef-in-training youngest son, I was up at stupid o'clock, necking a coffee before driving down the A3 to the BBC Surrey radio studios to respond to a news item they were running.

It was about the funding crisis in children's hospices, particularly Daisy's hospice, Shooting Star. 

Anyone who knows our family knows how important the support of Shooting Star was, and is, to our story.  How Daisy was referred at 6 months and from that time onward we knew that we had someone walking a path alongside us, caring not just for Daisy but the family as a whole.  Respite breaks away from the home were as important as visits by our hospice at home nurse.  And siblings days and a range of therapies gave our other children their own space.

Daisy was supported by Shooting Star Hospices for 12 years, they were there at the end of her life and continue to support our family now.  The staff there learned the complex procedures needed manage Daisy's care so that I could get a break, they worked in close partnership with the palliative care team to provide a joined up plan, they were there to catch us when our family dynamic fell apart and Daisy's daddy was diagnosed with terminal cancer. 

All of their care, all of their support, at no cost to us, at no cost to social services, at no cost to the taxpayer.

This is why I get up on my birthday and speak on the radio.  This model is unsustainable and it's indicative of a huge problem in how we support and care for all families caring for children with the most complex needs in this country.

Children's hospices are not funded by the government.  OK, well I'll qualify that, children's hospices receive minimal guaranteed funding from central government sources, in Shooting Star's case this amounts to 10% of their income.  The rest is made up from donated funds; from coporate sponsors, from people running marathons, from volunteers shaking the collecting tin.  Year in year out children's hospices have to raise millions to fund services that are increasingly reaching breaking point.

On Monday Shooting Star Hospices announced that they would halve the respite care they are currently offering and support only those children who were close to end of life.  Last week Acorns Children's hospices announced that they are planning to close one of their sites as there are simply not enough cash reserves available for the charity to keep three hospices running.

Medical science is incredible.  Breakthroughs over the past few years have meant that life expectancy for sick children has increased.  Without the drugs and interventions that Daisy received she would not have lived for twelve years, children are leaving neonatal units who would previously not have survived.  But in many cases children are coming out of hospital with the most complex of care regimens; machine dependent, with multiple therapeutic needs and complex drug charts....and this is where it is all starting to break down.

While medical science has advanced and children are living longer, the reality is they are still life limited and therefore need support services for longer.  Support services like those offered by a children's hospice.  When Andy was at end of life , he received support from the outreach team from our local adult hospice, it only lasted for a few days as that was all that was needed and I subsequently discovered that our local clinical commissioning group contract to the hospice to supplement their community based nursing teams and offer palliative care in the community.  No such model exists for paediatric palliative care.  Our community nursing team was understaffed and stretched to capacity.  they provided support during the week, any overnight emergencies had to be dealt with by a trip to A&E , normally via ambulance.  Clinical Commissioning Groups lean heavily on children's hospices to plug these gaps.  Providing respite support for children with complex needs is both expensive and requires highly skilled staff, and hospices simply cannot continue to operate without a guarantee of funding.  Or rather they can operate but they will have to cut the number of children they can support....

Last December the government pledged £25m support for children's hospices, however they have now reneged on that promise, none of that support has been forthcoming and the result is that hospices are closing beds, they are reducing the support they are able to give families.

This is all part of a wider issue in funding paediatric palliative care and social care funding for children with disabilities as a whole. 

Excellent palliative care enabled me to make plans for Daisy's end of life, it enabled me to give her a good death but this was provided through a combination of voluntary and commissioned services and we were lucky, the postcode lottery meant that we were supported by a hospice able to provide the level of care Daisy needed.  I fought hard for the continuing care package that was needed to keep Daisy at home and out of hospital, but even with support I was on my knees trying to juggle the complex medical regimens with caring for my other children , and subsequently for Andy. 

Everything is a battle, it's a fight.....and it's a symptom of the lack of support and funding across the entire sector.  Not only are children's hospices struggling to provide the care needed for an ever increasing number of children, for longer and with the most complex of medical regimens, but those families are also not supported by commissioned community-based services in order to care for their child safely and away from a hospital ward.

I was terrified that I would make a mistake that could cost Daisy her life. I was administering drugs on my own at home that would be double-checked on a hospital ward, I will never forget the moment Daisy had an anaphylactic reaction to an intravenous antibiotic I was infusing, when I was alone in the house....

The Disabled Children's Partnership (a coalition of more than 60 organisations campaigning for improved health and social care for disabled children, young people and their families) estimates that there is a £434million funding gap in children's social care.

No wonder parents are on their knees, the hospices that they turn to for support are finding it increasingly difficult to care for all of the children needing help in their area and children's social care services in the community are massively underfunded.  The ripple effect as always reaches far and wide.  It's about families, my other children only had one chance of a childhood , this was almost my mantra when I pleaded my case for extra support to keep Daisy at home. 

I was lucky (oh the irony), when Andy was diagnosed with cancer, extra support was put in place, and we had the hospice there to provide that all important safety net.  Without that support?  Would Daisy have lived for so long, would we have been able to spend as much time at home together as a family, would I have been able to hold my husband's hand as he took his last breath knowing that my disabled child was safe and cared for?

So this is why I will never turn down an opportunity to talk about the importance of funding for paediatric care and social care.  We are failing our most vulnerable families.

Next week is Children's Hospice WeekTogether for Short Lives, the children's hospice and palliative care charity,  will be continuing to highlight the fact that the government has reneged on it's promise of funding for Children's hospices.  In addition , The Disabled Children's Partnership continue their campaign to address the shortfall in children's social care funding through their #GiveItBack campaign.

Those of us caring for the most complex children face a battle every day to keep them alive, we shouldn't have to fight for the services to support us.

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