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.

Speaking at the launch party for Goodbye Daisy last week

Now we are four

"a third of our family has gone..."

My eldest son has aspergers.  His directness and honesty can be bluntly refreshing.  It's true, we are now a third smaller, four instead of six.

The past year, since Daisy died, has been spent trying to adjust yet again to our new family dynamic.  This summer it really came together, we have reformed as a unit of four, all of us intent on our paths, strongly looking forward, resolute to keep going.

I feel that we have turned a corner over the past few months, accepting where we are now, starting to look forward, beginning to make our way again.

Goodbye Daisy – A very special children's book

Daisy loved school.  Nothing made her happier after a hospital stay to put on her school jumper and know that it was a school day.  Always the bounce-back child she could be gravely ill with sepsis one day, then desperate to get off to school to see her friends and do some "busy work" the next day.

Daisy was the life and soul of her school, everyone knew Daisy and she knew everyone.  She had been going to the same school from the age of 3 and despite her deteriorating medical needs over the years we always found a way to make sure she got some school time.  In her later years school time was limited as her stamina decreased, days were shorter and then she attended for less and less days but she still got to school when she could.

Daisy had her special circle of friends, she had her favourites, she had fallings out with friends, she had best friends, she had favourite teachers, she was just like any other school girl.  In fact she also preferred the social side of school rather than learning and as she got older her teachers had to find lots of different strategies to get her to stay on task as there were so many more interesting things to get up to in the classroom!

Daisy went to a special school, there were lots of children with complex needs at her school, it also seemed that not a term went by without a letter coming home to tell us that one of the children within the school community had died.

Children with additional needs are statistically more likely experience the death of a friend during their school days.  Daisy's death affected the whole school.  Daisy's ability to bounce back from the brink had become a given, everyone was shocked when this time she did not bounce back.  The school got together and talked about Daisy, they played her favourite song from Frozen and released pink balloons and a social story was developed to help the teachers talk to the children about their grief.

Much of this work was thanks to Ella, Daisy's movement therapist, she understood that the children needed to express their grief and feelings even though many of them were non-verbal and communicated mainly via signing.

Angel Daisy ready for the Nativity play

It struck me how lucky we were to have Ella, she had worked with Daisy for many years, helping her articulate her feelings about what was going on in her life through play, movement and stories.  Andy and I had fought hard to have mental health support included in Daisy's EHCP plan and we were fortunate that Daisy's teachers were able to find a solution.  When Daisy died the school responded and helped Daisy's friends with their grief but I found that there were limited off the shelf resources for just this scenario.

 I had looked for books to help Daisy when Andy died, many of the ones targeted for children were just not appropriate for Daisy.  Daisy had a learning disability, she liked direct language, many of the stories were around animals dying and used metaphors or the books were just too complicated for Daisy.  She needed a social story to help articulate her feelings, feelings which in children with a learning disability can often by quite literal.  After Daisy died one of her friends was really concerned that she had not taken her wheelchair with her.  These were the sort of issues which were important to the children in Daisy's class. 

So I have decided to plug a gap in the market and I have written a children's book which is aimed at helping children with learning disabilities communicate their feelings when one of their friend dies.  It's written from the point of view of one of Daisy's friends.  I was really struck by the direct questions many of them asked.  Children are great, there are no metaphors, it's very much black and white, "she's not coming back". This doesn't mean they don't feel sad or have lots of unanswered questions.  When I visited a friend not long after Daisy died I was aware that her little girl Evie who has profound learning disabilities was aware that I was Daisy's mum but was confused because Daisy was not with me.  I wanted to write about Evies feelings and the questions she would have asked and the things she would feel if she had been able to speak.

I have also written a section on what I learned about tackling the subject of death with children with learning disabilities , from talking to Daisy about Andy's illness and death, ensuring  she felt involved in saying goodbye,  to how Daisy's friends felt when she died and how I wanted to help them feel included in mourning for her.

I have also asked the wonderful Ella to write from a professional's point of view, including some information and guidelines for schools, parents and carers to help them when a child from their community dies.  Lastly I hope to include a selection of relevant makaton signs to use when discussing grief, sadness and loss with children with learning disabilities.

This is clearly a very niche book but so essential, it could also be relevant for younger children and children on the autistic spectrum.  I could spend ages pitching the idea to publishers and agents but all that time I'm doing that the book could be out there and be available to support grieving children.  So I have decided to bit the bullet and I've launched a (very scary) Kickstarter campaign.

I need to fundraise the money to get the book published which includes the costs of our fabulous illustrator to bring it to life (once again I will use Helen Braid, she has designed my blog header and my first book cover, she knows my story, she will make the words come to life with her pictures!), books also need publicity and distribution, none of this is free so I have a pretty hefty stretch target to hit!

Already within 24 hours of launching the kickstarter I have raised 8% of the targeted £5K, but I need to keep the momentum going.  I am looking for the big investors, maybe a small company who would like to sponsor some of the book in return for publicity?  An individual who would like to pledge £500 and in return have their child illustrated in the book?  Maybe a philanthropist who would be willing to donate £750 for a training course for their local special school?

Please take a look at the kickstarter page and please share, share, share it.  Even if you only pledge £10 I will send you a signed copy of the book.  Please help Daisy's legacy live on and help other children who are grieving the loss of a special school friend.

https://www.kickstarter.com/projects/goodbyedaisy/goodbye-daisy-a-very-special-childrens-book

Please feel free to contact me on the blog contact form if you want to chat further about ways you could help.

Set adrift

I'm in a no-man's land at the moment.  Set adrift from a place I once knew.  It wasn't perfect, but I was easy in it's familiarity.

For years and years it was Andy and I , together, a team.  We weathered the storms and adversity brought us closer.  He was my best friend as well as my husband, he was the first one I would turn to when I wanted advice, to share good news, to vent, to gossip.  I would joke that I could never have an affair because I would want to tell him all about it.  We were a couple, a team. Our circle of friends was other couples.  We dreamed about the day when we would have our time again.  It was never to be.  Now I am no longer in the category called "part of a couple", now I'm an outsider, an intruder. 

When I walk home across Waterloo bridge there is no-one to meet for a sneaky drink before going home, there's no-one waiting at home to take my coat and ask me how my day was.  I'm in an alien world, I'm having to negotiate a new normal.  I can't remember the last time I went out for lunch or dinner.  We used to try and do that as much as our life with Daisy allowed.  It was our time, a date over lunch, a quick visit to the pub during a hospital stay, a cinema trip when we had a respite stay booked.  It was less time together than most other couples our age, but it was precious time together.

Now I sleep in an empty bed and remember how nice it was to have someone to cuddle up to.  Someone to chat about the day's events to.  Someone to notice if I am down or ill.  To share my happiness, to celebrate my successes.  They seem hollow and empty without someone who really cares.

I'm set adrift in an alien world and just when I thought I knew where I was the world became even more alien.

When Daisy died I lost my purpose.  I lost my job.  I lost my routine. I lost my tribe.

I am no longer a TPN Mum, a Costello Syndrome Mum, an epilepsy mum.  I can now only share my knowledge of what I knew for us.  I feel a fraud in the groups and forums I was once an active member of.  I feel I should leave them, my knowledge is in the past now.

I'm set adrift from the world that sustained me after Andy died.  The world of hospitals, of TPN, Catheters and IVs, of continuing care plans and respite stays and endless battles to sort out all the stuff that was part and parcel of Daisy's life.  It gave me focus and distraction after he died, I needed to keep going for Daisy, it was my familiar world and caring for Daisy, for all my children, was my priority.

Now Daisy is gone, leaving an unbearable void. 

Her death has blown me off course. 

I've been trying to find a new place to settle.  I miss my old world so much.  I miss being a wife.  I miss being a warrior for Daisy.  I miss the people who were part of that world.

I'm hoping that 2018 brings us some stability.  Some respite from the storms.  I need to find my new normal, I need to find who I am now that my old world is no longer there for me.

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.

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.

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 .

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

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.