Definitely not in the plan

We survived Christmas, just.  It was as anticipated, fraught.  It was Daisy's excitement that made Christmas special.  Like any family with small children it was all about the carrot for Rudolph, the drink for Santa, hanging up stockings, coming downstairs early to tear off wrapping paper.

You all know how much Daisy loved Christmas.  So her absence left a huge void.  Suddenly we were being forced to transition to a grown up Christmas, acutely aware of who was missing.

Forever Twelve

It's Daisy's birthday.  She would be a teenager today.  But now she will be forever twelve.

I'm not sure how I feel.  If Daisy was still here to celebrate her birthday I wonder what we would have been able to do, what she would have been able to do?

Last year we went to see Disney on Ice.  She was so excited to see her favourite character, Olaf, from Frozen.  We left after the interval however.  The noise was overwhelming for her, she was uncomfortable, she was trying so hard but it was just all too much and her excitement turned to anger as she lashed out at anyone getting too close.

This time last year I was starting to have conversations about changing her wheelchair to a bigger one, one that she wouldn't be able to wheel herself but would give her better  support and comfort.  I knew that our trip to see Disney on Ice was probably the last treat, not because I knew she would die but everything was becoming harder and harder for her. Getting out and about was just too difficult, for Daisy and for us.

Song for Ten. Two years in.

"A young widow is a statistical outlier" - I read that in a paper today, it was part of a feature on Christmases without your husband.  I was 47 when Andy died and much as I thought life was tough, it got tougher still.  Sole parenting four grieving children, being on my own making decisions about my youngest daughter's end of life, organising and speaking at two funerals.  It's not what you expect to do in your forties.  This was supposed to be our time, now I'm on my on and I'm still tied to term times and parent-teacher meetings.

Yesterday we got through another December 14th.  The anniversary of Andy's death. 

I talk to him a lot.  Whole conversations.  We were together for so long I know what he would say, how he would react.

Two whole years have gone by since I last held your hand Andy.  So much has happened.  We have been tossed about in the biggest waves, we are bruised and battered by experience and sitting blinking on shore.  This is our new life and I know you would be so, so proud how despite it all, our devastation at losing you, then losing Daisy, we are still standing, we are still moving forward, we are carving out a new life, taking our steps on yet another unknown path, but missing you so much.

It's funny, I still expect you to just come back home as if nothing has happened. Asking for the latest news, the football results, you would be taken aback by the changes we have made at home.  I wanted the children to know that we are moving forward but not forgetting.  All those years caring for Daisy, house maintenance took a back seat, so we've been redecorating and changing things around, it doesn't have to be wheelchair friendly anymore, I think you'd approve.

Deck the halls

It was always our rule to wait until 12th December to put our Christmas decorations up in our family.  That's my dad's birthday.  Even though my dad died seventeen years ago we stuck to that tradition for a long time.

Until of course Daisy came along.  Like many people with a learning disability, Daisy was obsessed by Christmas.  The Singing Hands Christmas DVDs were played all year in our house and lists to "ho ho ho" were scribbled whenever Daisy had access to paper and pens.

As soon as Christmas decorations appeared in the shops her excitement would mount to fever pitch with a constant demand of "where tree?".  Most years I was able to hang on until the earliest days in December but last year Daisy wore me down.

Last year our tree went up at the end of November.  Last year had been so tough for us all, trying to come to terms with life without Andy.  The Christmas after Andy died it was such a blur that required superhuman effort to get through, we hadn't even had his funeral at that point.  The Christmas Andy died was something just to be negotiated.

So last year I wanted to make up for things, I wanted to make it doubly special.  Just as I had all those Christmases after Daisy was born, so aware that her first Christmas was spent in hospital and our family was apart on Christmas morning.

Always on a Friday evening.....

I had a dream the other night, it's one I have quite a lot .  The one where I am on my own at home, doing Daisy's IVs late at night and I go to the drawer to get out some more syringes and there are none there.  I feel that familiar panic, "what do I do now? , it's the middle of the night, the children are asleep, I'm on my own, how will I finish these IVs?  They are time-dependent, if I don't get them done now then the schedule will be thrown, putting Daisy at risk....."  I wake up, my heart pounding.

Not too long ago this wasn't a dream.  This was my reality.  24/7 worry.  Constantly topping up the medical supplies, trying to forecast how many syringes, needles, saline flushes we would need, whether the doctors would change the dose and this would throw my calculations and we would be short. 

There was nothing more satisfying to me than a tray of IVs that I had draw up myself, quite frequently there were 2 trays worth to be drawn up and administered.  It kept her out of hospital.

Snakes and Ladders

I haven't updated for ages, once again the poor blog has been neglected.  My life has been taken up with lots of writing projects, some freelance commissions as I try to earn some money and lots of opportunities to speak and share my story.

Sharing my story - that's the common theme in everything I've been doing recently, not just to simply share my own story but in doing so hopefully encourage others to share theirs or even be a voice for those who cannot share theirs.  I want to share our story because talking about Daisy and Andy keeps them alive, it helps people to know them as people, not the pieces of an awful tragedy.

I find it therapeutic but it is also emotionally draining, I watch the faces of the people in the audience and I see their reactions as I speak.  Some people inevitably cry.  But the more I share the more people open up with their stories and that must be a good thing.

I've been involved in a couple of "Was this in the plan?" versions of Death Cafes over the past few weeks.  Amending the traditional "Death Cafe" format to include conversation starters and an opportunity to share my story to demonstrate to the attendees that it's OK to talk about death, it's actually quite liberating.  There was a lot of laughter at both events and there will be more, I promise.

Be careful what you wish for

Christmas.  For Daisy this was the most important time of the year (closely followed by her birthday, and then everyone else's birthdays).

 The build up started in the summer.  With the demands for me to write lists for "Ho Ho Ho".  She loved to send letters folding up the pieces of paper she had scribbled on and demanding a stamp so that they could be sent (quickly please mummy)

The Singing Hands Christmas DVD would be on constant loop and gradually over the months excitement would build as decorations appeared in the shops and the rest of the world caught up with Daisy's festive enthusiasm.  Last year I even broke my absolute rule and put the tree up in November, it had been getting earlier and earlier each year and last year was the first Christmas since Andy's funeral and I was prepared to do anything to make it special, including giving in to Daisy's demands and putting the tree up before December.

I'm so glad I did.  I'm so glad I trawled the internet trying to get hold of the Baby Alive doll she kept watching You Tube videos of.  I'm so glad she dressed up in her Christmas hat and visited friends,  delivering cards and presents.

visiting the GP surgery to deliver cards to our friends there

Wear Jeans, Change Lives

Daisy was born with a completely sporadic gene mutation which caused her to have the rare disease, Costello Syndrome.  She was rare, especially as it was likely that she had some secondary, undiagnosed mutation which caused her to have such extreme symptoms.

An anniversary gift to Andy

The best piece of advice I have ever been given was by a colleague when I was working at Hewlett Packard.  I really wanted a global role and to spend more time working internationally.  "Decide what you really want and make it happen" she said "otherwise you will just make an excuse".

This has become the mantra for how I have lived my life ever since. (I got the role by the way).   It's what has helped me to develop the resilience and drive to get through some of my toughest times over the past few years.  

I wanted to be the best possible mum for Daisy, I wanted to make sure that our other children did not miss out on childhood, I wanted to ensure our marriage would survive...

After Andy died I was determined to write the book that he so wanted me to write.  I wanted it to be published by our 25th wedding anniversary, my gift to him.

So young! 12th September 1992

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.

The decision no parent should ever have to face

Nearly 6 months ago I had to make a decision that no parent should ever have to face.  I had to agree to the hospital turning off my daughter's life support and to let her go.

I always knew the day would come.  I knew that Daisy would die before me but I just did not know when or how.  As it was we had 12 years with her.  In her final three years the effect of the seizures and long term total parenteral nutrition (TPN) caused brain and neurological damage. We could see a clear deterioration, a very slow but painful decline.

When Daisy was about 7 she was referred to the palliative care team, she had been under hospice care since she was 6 months, but in agreement with the hospital we understood that we needed to focus on maximising Daisy's quality of life and enjoying the time we had with her.

These foolish things remind me of you

Linden Lodge Friends Forever Garden pictureIt catches you unawares, when you least expect it.  Those little things.  I'll be  in a shop and see a something that I know Daisy would like, would have liked, and remember that I'm never going shop for her again.  No more trinkets from festivals, tshirts of her latest favourite character, no more over the top accessories or endless craft supplies.

mothers day card from daisy

Happy Father's Day (especially to those of us pulling the double shift)

Every year on Father's day I send a message to other mums I know who are single parents, acknowledging that they are pulling the double shift .

Diagnosing autism - services need to be increased, not reduced.

If you are a regular reader of my blog you probably know that my two boys both have a diagnosis of high functioning autism, sometimes called Asperger Syndrome. 

My boys are very different, both have different needs but thanks to some great support they are on their way to fulfilling their dreams.

It was not always like this.  Our journey to diagnosis for the boys was long, convoluted and costly.  In many ways it was so much easier with Daisy, her disability was so extreme and obvious the support clicked into place immediately.

It’s different with the so called “invisible disabilities” however.  The lifelong neurodevelopmental disorders that fall within the autism spectrum are difficult to spot and children can fall between the cracks in our broken system without the support they need.

The lottery of life

Xanthe took this picture in early January, Daisy was in for an MRI under general anaesthetic as her neurology team tried to work out why her physical abilities had deteriorated so dramatically over the past few months. It was only a few weeks later that same month that Daisy passed away in the intensive care ward of the hospital.

This picture does not just speak volumes about the bond that Daisy and I had, that speaks for itself.  For me it also tells a story of a little girl who was safe and sound.  No matter what was going on in her life, she was cared for, she had a roof over her head, she had access to help.

Back in the narrative

Andy and I believed strongly that experiences of life were as important a part of our children's upbringing as their formal education.  Despite the limitations of respite and the need to manage Daisy's care we were still doggedly determined to make sure that our other three children were able to have a childhood rich with experiences and where possible the chance to visit new places and meet new people.

I promised Andy when he died that I would still do that, I would still ensure that our children saw the world and experienced life.

Last week Xanthe and I went to New York for a short break.  It occurred to me that this was the longest we had spent together on our own since Daisy had been born.  What a wonderful opportunity.  We were celebrating Xanthe's recent 18th birthday, fulfilling one of our plans, a mum and daughter, girls only holiday in NYC.

I have written a book

"You should write a book"

I've lost count of the number of people who have said that to me over the years.

So I did.

wasthisintheplan book cover

I promised Andy I would.  I promised I would capture our story and share it so that people could understand that we really are ordinary people thrown into extraordinary circumstances.  I was no different to thousands of other working mums in the UK, trying to juggle a career with childcare.  Until Daisy came along, and my world changed overnight.

It's experience that has shaped me and given me the resilience to face the challenges life has presented over the years.

That's why the book's strapline is "It's not the cards you're dealt, it's how you play them"

Andy played poker and he knew all too well the game was more than the hand you were dealt.  I hope I have done our story justice.  The people who have read early edits seem to think so.

My book is being launched on 12th September on what would have been our 25th wedding anniversary.  It's my gift to Andy and a legacy to our children.

You can pre-order a copy before the launch date and receive it the day before.  For all pre-orders I will donate 5% of the rrp to our hospice, ShootingStar-Chase.

The book will be available to order from Amazon and all good bookshops on the launch date.

 International orders and ebook orders will be available from that time too. An audiobook is in the pipeline for release at a later date.

In the meantime if you are based in the UK and would like a copy, please click on the link below.

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

Thank you for the days

The post I always knew that one day I would write is the hardest.

Today our beautiful, feisty, determined girl, Daisy Rose, took her last breath and is out of pain and dancing in the stars with her beloved daddy.

At 2.35pm this afternoon her life support was switched off and Theo and I held her hands as she took her last breath.  Jules, Xanthe, Theo and I surrounded her with love as she left us to go to a place where she can run and jump and skip and play to her heart's content and be Daisy, not a syndrome, a diagnosis, just a little girl.

I have a certificate that says she died of septic shock but I think it was just her time to go, her little body was slowing down, she was needing more and more medications and painful procedures and over the past few weeks she just preferred to lie in bed and let us come to her.  She missed her daddy so much and talked about him every single day, I think her heart broke when he left us.

We were honoured to have her in our lives for twelve years.  Twelve years where she not only defied the odds but truly lived.

Everyone who met Daisy never forgot her, she changed so many lives, such a beautiful legacy.  She gave me purpose, meaning and direction along with a few more grey hairs than I should have at this age but my life and the life of her brothers and sister have been made so much more meaningful by her presence.

Daisy deteriorated very quickly and she just wanted to go home but it was not possible but thanks to our hospice and the cold mattress they set up in her room we brought her home this evening for one last night in her own bed, surrounded by her toys.  She looks like she is fast asleep and any minute will wake up and tell us, as only Daisy could to "go". Tomorrow we will take her to her beloved Shooting Star Hospice, just as we always planned.

Theo thanked the ICU consultant for allowing her a dignified death.  We will always be grateful to Great Ormond Street hospital for being there for Daisy on her final journey and for never, ever giving up on her.

I cannot believe that she has gone, she defied the odds over and over and was determined to make her mark on the world. She did.

Daisy Rose Nimmo
Sunrise - 22/12/2004
Sunset - 31/01/2017


In Daisy's hands

I wasn't supposed to be writing this update.  This update was supposed to be all about how it really does take a village to bring up a child like Daisy, joined up services around education, health and social care.  How I have been struggling for months trying to sort up some joined up thinking to support me to keep Daisy at home while also allowing her to access the education she needs and wants.  I wish I was writing about this, but while I have been trying to sort out some joined up thinking and encouraging teams to communicate so that we have the basics in place like hoisting and care I have also been really worried.

Realistic Resolutions

"I don't make resolutions"

Andy always made this announcement at New Year (whenever I started reeling out my list for the year).

He firmly believed the focus should be about changing habits , not making unrealistic promises.  "It takes six weeks to change a habit" was his rationale and he felt that you didn't need a point in time like a new year to make changes, we should be constantly thinking about what we would like to do differently or change and make realistic goals so we don't set ourselves up for failure.

I do like a resolution however, I love a deadline, it drives me and being a naturally competitive person it gives me something to work towards.

In 2012 I resolved to get back to running again.  I had always been a regular runner, even from my teenage years but it had tapered off as a result of the long hospital stays with Daisy, the comfort eating was making me bloated and I took a look in the mirror and decided that this was not what I wanted.