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

Long hot summer just passed me by

The long summer holiday.  Obviously I use the word "summer' in the loosest sense of the word as I have resorted to firing up the woodburner and digging out my winter boots on more than one occasion this summer as we enjoy the ups and downs of the British weather.

Thanks to the "on this day" function on Facebook I receive daily reminders of previous summers.  Last sumer when Daisy developed shingles just before I was about to go away for a much anticipated school reunion and how she bounced back as only Daisy could so that at the eleventh hour I could make it.  The week's  break Andy, Jules and I took in Southwold when Andy was recovering form his SIRT treatment - sitting together on windswept beaches, plenty of shots of all the lovely food we consumed that week.

An empty wheelchair

One of the first things I did the day after Andy died was to bag up all his meds, injections and creams and take them back to the hospital.  They were a visible sign of his cancer, they were not Andy, they were things that had become part of our lives after his cancer diagnosis and I didn't want them in the house any more.

I wanted to remember a time when life with Andy wasn't medicalised.  When it didn't revolve around hospitals and chemo and drug regimens.

In only a short time we had collected quite a pharmacy for Andy

The long goodbye

We took Daisy back to school for her funeral, one last trip to the school she loved and had attended from the age of three.  I wanted to hide under a rock but because Daisy touched so many lives it was important that everyone got a chance to say goodbye.

We did her proud.  My beautiful rainbow girl even arranged for a rainbow to appear over the school at the very end.

Coming to terms with it all

It's so hard to believe that Daisy has gone, that we will not see her any more, that I won't hear her call out "mummyyyyy!!!!!!!".  She was the centre of our home.  Everything revolved around Daisy, because she insisted it should.  Her siblings were at her beck and call, in and out of her room, sorting out her ipad, responding to her demands, cuddling her, just being there.  That's what Daisy liked more than anything, to know that we were there.  She just needed to have us around.

Over the past couple of months she had been spending more and more time in bed or lying on the sofa, with her ever present ipad, she liked to observe the domestic chaos of our home.

And now this focal point has gone.  And we wander in and out of her room like lost sheep.

How can it be that in the space of less than fourteen months we have gone from a family of six to a family of four?  The house is too quiet.  The washing basket a testament to the reduced numbers.

Daisy passed away on the intensive care ward at Great Ormond Street hospital.  The team did everything they could but in the end it was Daisy's time and she was tired.  She had been tired for a while.  I knew it was coming.  But even when the end came it was such a shock.

We moved her to a lovely room the hospital has on it's intensive care wards.  It's the room for the children who have passed away.  There is no medical equipment, they have made it as homely as possible.  In this room we shed our tears for our girl and kissed her goodbye away from the beeps and alarms in the main ward outside.  The nurses washed her and thanks to our hospice team we then brought her home for one last time.  She just wanted to come home.

Our hospice at home nurse met the boys at home and got her room ready, setting up a cold blanket on her bed.  Xanthe and I followed behind, bringing an empty wheelchair and a bag full of memories.  The funeral directors who had dealt with Andy's funeral the previous January brought our girl home and she spent the night in her bed, surrounded  by all of her favourite toys as we drifted in and out, each spending quiet time with her, stroking her face, hardly able to process the reality of what had just happened.

The next day she was taken to her beloved hospice, ShootingStar-Chase, as we always knew she would.  She stayed on her cold blanket and rested in one of the bedrooms as the special chilled bedroom was already occupied.  This was a better option for us as we could sit in Daisy's room with her and in time allow some close friends to come and say their goodbyes.  Xanthe and I chose her Princess Anna from Frozen dress to wear and my friend Sam brought a beautiful flower crown of fresh roses and eucalyptus.  We sat with her smiling and laughing and remembering so many happy times.

When a child dies and is resting at the hospice the team hang a butterfly outside the front door.  For many years I visited and saw the butterfly, and then it was Daisy's turn.

The hospice seemed so quiet without Daisy, without her pumps beeping or her constant presence checking what everyone else was up to.  I stayed in one of the parent flats and being there cocooned me from the outside world and allowed me time to process what had happened.

But I knew we had to face the reality so last Friday Daisy was moved to the funeral directors and tomorrow I will visit and tuck her in for the last time,  surrounded by toys.  On Wednesday we will take her to school for a final journey and hold her funeral there, it's only fitting that Daisy should do things differently after all.  Her cremation will be held privately with just myself and the three children on a separate date.

We had twelve wonderful years with Daisy, she taught us so much, it's time to let her go and say goodbye.  We will do her proud.

This is the link to the page for donations in Daisy's memory to our hospice

https://www.justgiving.com/fundraising/DaisyRoseNimmo

All the firsts

It's been nearly a year now.  It's been a tough year.  So many firsts; first father's day, first mother's day, first wedding anniversary, the children's birthdays, first new school year, first football season.... the list is endless, every day of this year is the first one since Andy left us.

But the big ones are coming now.  The first time we celebrate his birthday and he's not here anymore.  And we will celebrate it.  Celebrate that he was here, that he was born, that he lived.

The older children and I are going away for the weekend.  We'll raise a glass on Saturday as we remember how much Andy insisted on making such a huge deal of his birthday; "I can't load the dishwasher, it's my birthday", "I have to watch my film/netflix series/sports programme (insert preference here!) - it's my birthday".  So we will make it special and wish him happy birthday, the first without him, now that time has stood still, he will always be the same age.

The day Sherlock made Daisy smile (thanks to the London Fire Brigade!)

There are two things that Daisy loves in the world more than her family or her good friends Singing Hands (don't worry Suzanne and Tracy, you will never be replaced in Daisy's affections!) - and that's  dogs and the Fire Service!

A few months ago I saw a local news item about the Fire Investigation Dogs which are used by the London Fire Brigade.  They assist in criminal investigations to see whether a fire has been started deliberately.  They wear special boots to protect their paws from any sharp objects at the scene and their training involves rewarding them with a tennis ball if they manage to seek out a a flammable substance.

Daisy's working cocker spaniel dog, Pluto, is her best friend.  He adores her and she adores him.  If Daisy has a seizure he is there by her side, licking her face until she comes out of it.

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.

It's only been 4 months

It's only been 4 months.  4 months since I last held Andy's hand, 4 months since he was in this house. In the days and weeks afterwards I was swept along by the wave of practicalities, the memorial, the funeral, the paperwork.

In the past four months I have been grateful in many ways for the challenges and distraction of keeping the plates spinning with my family.  The week after Andy died it was Daisy's birthday, then Christmas, New Year, the final goodbyes, hospital appointments for Daisy, meetings at the children's schools and colleges, two more birthdays - Theo is now 19, Xanthe turned 17, Easter, Valentines, Mother's Day.

It's about time we stopped treating disability issues as an afterthought

A couple of weeks ago I decided to take Daisy to an inclusive Dance & Singing workshop at the Royal Festival Hall on the Southbank in London.  I had seen it advertised the day before and thought it would be a fun thing for us to do together on the Saturday morning.  We live in London, we have an amazing mass transport system, except, of course, if you are disabled like Diasy, then getting from A to B involves a lot more planning and preparation.

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.

It's times like these you learn to live again

It's funny the opportunities adversity can throw at you.  We have found this with Daisy, we have experienced the lowest of lows at times but also have had a world opened up to us that would never have been possible if we had not been the parents of life limited child with her level of complexity (and huge personality!).

Hitting the Wall

Marathon runners know this term well - hitting the wall.  That point in the race where your reserves have run out, you legs are screaming in pain and you have to do all you can to overcome that voice in your head which is saying "you can't do this".

We have hit the wall. Not surprisingly really, 17 rounds of gruelling chemo over 3 days, an intensive course of Selective Internal Radiation Therapy (SIRT), coupled with a very complicated family life is going to have it's toll.

A Landmark Supreme Court Victory for Children Like Daisy

There was an interim budget last week in the UK.  Another round of austerity measures, more cuts,  more worrying times for those of us, forced through circumstances, to rely heavily on our benefits system.

On the same day as the budget, there was also a glimmer of hope for parents caring for some of the sickest and most complex children in the UK.  You probably didn't even notice it, but there was a landmark victory in the Supreme Court. It unanimously ruled that taking away Disability Living Allowance (DLA) from a disabled child after he had been in hospital for more than 84 days is in breach of his human rights and unlawful.  This was the first time the Supreme Court has ever found for a claimant in a Social Security Case.

When carers get sick

I've got yet another chest infection, I feel really rough and no doubt, thanks to my asthma, a prescription for a course of steroids will be on the cards by Monday.  It took all my human strength to get Daisy to her respite at the Children's Trust on Friday.  Respite that had been booked initially because I was supposed to be running an overnight Enduro race on Wimbledon common, when an ongoing achilles issue scuppered those plans we then planned to visit friends in Cambridge and have a weekend away, when chemo scheduling scuppered those plans I arranged post birthday drinks with some of my friends - and now this lurgy has scuppered those plans.

If I worked full time I would have been signed off sick, but when you are a carer and people rely on you to make sure you have meds or food or to speak to doctors on their behalf then you cannot be sick.  It just all became too much yesterday as I felt so poorly and fed up about our situation. Fortunately we are all made of pretty strong stuff in our little family and they all rallied around showing through actions (and not necessarily through words) that they do care and appreciate what I do.

Words came this morning however in this lovely post my husband put on facebook, it sums it all up really. 

It's carers week and it's great to see a campaign to highlight the huge need to look after those doing the caring for people with illness and disability. 

This weekend hasn't been the happiest as the one person holding our shit together gets sick and things start to get difficult. That accumulated stress and pressure on carers affects not just us but shared by hundreds of thousands of people in this country doing the same. It's a mostly thankless task as they are expected to look after people under the most trying circumstances. 

It's the long term day in day out constant tasks both physical and mental to keep moving forward, each person finds their strength to deal with it in their own way. And to make the best of each day without faltering as you have the life of someone in your hands is something quite amazing. 

I have it easy to be honest in comparison to what Stephanie Nimmo goes through, all I'm dealing with is my road to wellness and I can control how I am in this, but when your essential support cant function you realise how wrapped in your own world you can be and not see the needs of others.

Give the invisible children a break too

A few years ago I wrote a blog post about whether respite was a right or a privilege.  It has always felt like I should be so grateful to the powers that be for the opportunity to get a full night's sleep.

When you become a parent you expect that the early years are going to strongly feature broken sleep and long hours watching the latest Disney offering, but eventually your child will sleep through and become independent and your evenings are reclaimed.  And as they grow older they go on sleepovers at friend's houses, stay with Grandparents and go away on school residentials.  Eventually you find yourself (as I often do with Theo) texting them to see if they are coming home that night and will it be OK to put the lock on the door!

The EHCP Process: An exercise in jumping through hoops?

Securing an Education, Health & Social Care Plan to support your child's special education needs feels at times like being forced to jump through hoops, over and over. Having been through this process recently I thought I should share our story, and my tips for getting through the process without getting burned.

I wrote last year about our youngest son and his diagnosis of autism spectrum disorder.  You would think, being the parents of a child with learning disabilities (and a syndrome associated with autism) as well as a highly intelligent eldest child with aspergers/high functioning autism, that we could have spotted it a mile off.  But the reality is, just as I tell the professionals, every child is different, every child presents differently.

So Jules has an official diagnosis of Asperger Syndrome (now commonly known as high functioning autism).  His issues are very much around anxiety and he has speech and language and executive functioning difficulties which in a nutshell have meant that transition to a huge London high school from a small suburban primary was overwhelming for him.

A&E is not a dumping ground

Before children  I had never paid a visit to the local accident and emergency department as an adult.  When my first three came along I had a few visits there, mainly for high temperatures which were not responding to the usual treatments at home, two of those visits resulted in Xanthe being hospitalised for care so clearly my instinct that this was a genuine medical emergency was right.

Daisy's discharge from the neonatal unit also came with a gold plated, annual pass to the local A&E department however.

For the first few years after premature birth children are much more susceptible to infections which are far more serious than the usual childhood bugs, we were in and out constantly.

Overcoming my British reserve (all thanks to Amanda Palmer)

When I go to Glastonbury I prefer to wander around around, discovering music that I might not otherwise have heard if I stuck to a rigid list of bands I want see/the mass media suggests I see.

It was during one of these wanderings in 2013 that I found myself at the Other Stage watching the most amazing crowdsurfing I had ever seen.  I saw this incredible woman being carried across the crowds with a huge train billowing behind her, and all the time she was singing, a strong powerful voice, a strong powerful song.  This was my introduction to Amanda Palmer.

Amanda Palmer Crowdsurfing at Glastonbury 2013 (from glastonburyfestivals.co.uk)

Learning to dance in the rain

Sorry readers, I have neglected you for far too long.  Truth is, this crazy, busy, plate spinning life of mine has gone into warp drive and this combined with some lovely seasonal lurgies knocking us all down like dominos has left very little time to do any writing.

I'm just back from a  half term break with Jules, thanks to respite support from The Children's Trust at Tadworth and my mum stepping in to hold the fort in my absence.

I  really needed these few days away from what has become our normality to regroup and recharge, things happened so quickly over the past few months and it has been difficult just to catch my breath with the speed of events.

I went back to Normandy, so strange to think that last August Andy and I managed to work the logistics to take a break here without children, it was a lovely few days together, oblivious to the bomb that was about to go off in the middle of our lives.

It is amazing though how quickly it has all become our new norm; chemo, injections, juggling respite, adapting to a new raft of medical terms.

After 5 gruelling rounds of chemo, Andy had scans which showed that the drugs are working, the primary tumour in his bowel  and the secondaries in his liver have shrunk by 30%. In fact the treatment is working so well that the liver surgeons have asked for 2 more rounds in addition to the initial 6 planned to optimise tumour shrinkage.  The plan is then for more scans, followed by a week of intensive radiotherapy treatment on the primary tumour and while that is cooking (the oncologist's term), resection of Andy's 3 liver metastases, followed, once he has recovered by removal of the primary tumour.