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!

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)

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 www.GoodbyeDaisy.com 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!

#GoodbyeDaisy

Talking about it doesn't mean it's about to happen

I know I talk about death a lot in this blog, but everyone who knows me personally also knows that I am the most optimistic, positive person out there.  Because I talk about death doesn't mean it's going to happen imminently,  it just means that when I die I will, as the British so quaintly say "have my affairs in order", as you can imagine my affairs are somewhat complicated so all the more reason to make sure they are in order.

Death and taxes, they are the most inevitable things about our life on earth.  Yet people who will easily visit an accountant to manage their tax affairs would not consider going as easily to a solicitor to sort out their will.

Memories, milestones & wishing time would stand still

So we're mid way through March, spring is definitely here in London.  Yesterday I did a 20 mile training run in preparation for the London Marathon.  The Thames towpath was slowly coming back to life after winter, hawthorn blossom, clumps of daffodils.

Easter is looming full of rebirth and new life, but I want time to stand still, I wanted time to stand still from December last year.

I'm not alone in this, a recent conversation with another woman  also widowed prematurely in 2015 confirmed she felt the same as me.  We both discussed how New Year's Eve had affected us, I wanted the year to go on forever because the chime of the bells at midnight meant that we were no longer in the year he had died, that it was already in the past, she felt the same, it was a relief to know I was not being irrational.

Bye Bye Daddy - Talking about death when your child has a learning disability

This is the makaton sign for sad

And this is the makaton sign for Daddy

Daisy uses these signs all the time at the moment, she uses them a lot when people come to the house because she wants to tell them about daddy.

She also uses her voice , at least 100 times a day she says “bye bye daddy” .

One Month. One Week. Bowie.

Today is a sad day.  One month ago today I held my husband's hand as he took his last breath.  I told my children that their daddy had passed away, I tried to help my learning disabled child understand that daddy was not coming back.

A week ago we held his funeral.  We struggled through my daughter's birthday, Christmas and New Year before we could say our final goodbyes.  We had an evening of celebration on Saturday 2nd January filled with laughter and stories, eulogies of hope and pride.  His funeral on Monday 4th January was when it hit me.  He was not coming back.

My Eulogy for Andy's Memorial Service

We gave Andy a wonderful send off, filled with friends, laughter, music, stories, just as he wished.  People travelled from all over the world to be there and it gave the children and I such comfort to see all these fabulous people from so many areas of Andy's life talking and sharing memories.  We held a Celebration/Memorial Service at Andy's former Drama School in London on Saturday 2nd January and followed it with his Funeral Service on Monday.

We played many of the songs that Andy had requested and friends sang, read and shared stories of time spent with him, we even had a singalong to Hey Jude at the end of the memorial!

Our children delivered incredible, heartfelt eulogies at the funeral, telling everyone how they would life the life their Dad had prepared them for, full of optimism and hope, fulfilling their potential and seizing the moment - I not have been more proud.

I spoke at both the Memorial Service and at the Funeral and here's the transcript of my speech at the Memorial - it is very lengthy so you may want to grab a cup of coffee before you start reading, it's just indicative of the full life Andy lived.  Thank you to everyone who has reached out to our family over these weeks, now we are going to have to learn to live yet another new life, this time the one without Andy.

Daisy has been amazing, just like the rest of the children and we will be releasing some balloons in the next day or so with her so that she can say her own private goodbye, I will also blog on what it has been like helping a child with a learning disability understand that their daddy has died as I have already learned a huge amount on what and what not to do or say.

Steph's Speech for Andy's Memorial Service - 2nd January 2016

Andy and I spoke a lot about funerals and celebrations, he was determined that his friends who knew him well and had shared so many experiences had an opportunity to share stories and have a laugh and reflect on a life well lived.  It was never going to be about mourning or regret, that wasn’t Andy.  The thing he really wanted you all to know was that he did not lose a battle with cancer.  For him it was about optimising the odds, science, drugs, knowledge a smattering of NLP to give him the longest survival time.  That time was just over a year.  It was in the end less than he had hoped for but more than we ever thought possible in November 2014 when we were told that he had advanced, incurable colorectal cancer.