When Life Gives You Lemons: Danny Germain

Here's another interview as part of my When Life Gives You Lemons series.

 I've known Danny and his family for many years.  Danny's step-mum, Marion, was one of Andy's closest friends and he turned to her for coaching support to help him with the mental strength he knew he would need when he was diagnosed with cancer.  Marion was also one of Daisy's Godmothers.  Danny was a small boy when we first met him and it was years before we were entrusted with the secret that Danny had carried with him since he was little.

Photo of Danny Germain smiling at the camera

Tonight I'm thinking of.......

Tonight I'm thinking of the mum of the 18 year old first year nursing student who answered the ward phone during a night shift to have the word "murderer" screamed at her down the line.

Tonight I'm thinking of the little girl who is lying in a hospital bed desperately ill as her family gather around her bedside listening to the sound of protesters outside.

Tonight I am thinking of that girl's aunt who had to have a security guard escort her to the ward to visit her niece.

Steph with her head on Daisy's head as Daisy recovers from a general anaesthetic in a radiology suite with lots of medical equipment in the background
Andy took this picture of Daisy & I in the Interventional Radiology Suite,
as she recovered from her 13th central line insertion

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.

picture of daisy age 3 holding out her arms to be picked up, she is wearing a white party dress and smiling

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.

picture of steph smiling at daisy who is dressed as an angel with tinsel in her hair
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.


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

When Life Gives You Lemons : Janine Osborne

I have known Janine (aka: Jin, Mrs Bowring, JOB) since the day after she was born!  

My family lived next to her parents in Wales and when her mum brought baby Janine home from the hospital I was one of the first to have a cwtch.  Janine and her sisters Hannah and Caroline are like little cousins to me and while not officially family are definitely part of my welsh family.

Janine's life has had it's ups and downs and I was so happy for her when she met the love of her life, Matt. Diagnosed with a really serious disease that nearly cost her life, Janine fought back, determined not to let it beat her just as her life was going so well.  Beat it she did and while still having regular chemotherapy treatment to keep the symptoms of her rare disease at bay she dedicates her time to helping other people battle through illness while also raising funds and awareness for many charities.  

Only Janine could spend her honeymoon climbing mountains in her wedding dress, such is her determination that her illness will not rob her of the the best years of her life/

Janine on her wedding day, a few days later she was climbing mountains wearing the same dress!

The Multi-Disciplinary Meeting

I was 36 when Daisy was born.  I already had seven years of parenting under my belt.

I was acutely aware that in many ways I had so much more in my favour than many other parents embarking on the journey of caring for a complex child.  I was probably closer in age to many of the professionals treating my daughter over the years, I had reached a high level of academic attainment in my own chosen field of expertise, I spoke fluent english and I had the support of one of the best management development coaches in the business, my own husband.  I knew how to negotiate, I knew how to manage complex projects.   

Yet despite all of that, entering a room full of professionals who were all gathered to discuss the fate of my child was one of the toughest things I have had to do.  Nothing in my previous life could prepare me for it.  I felt disempowered and vulnerable.

When Life Gives You Lemons: Debs Aspland

When Life Gives You Lemons is my blog series profiling some of the incredible people I have met during my journey.  People who, like me, have faced adversity but refuse to be defined by it.

Next up is Debs Aspland.

I first met Debs very briefly in 2012 when we both attended the Britmums Brilliance in Blogging Awards.  We bumped into each other again a couple of years later when were invited to meet with and give feedback to the Minister of State for Children and Families.  However it was over drinks on the Southbank that I really got to know Debs and recognise her for the kindred spirit and fellow warrior she is.  She definitely shares my rebellious streak and I couldn't wait to ask her to be the subject of an interview for my When Life Gives You Lemons series.

head shot of Debs Aspland

Mothering Sunday

So here it is, another Mothering Sunday. The second without Daisy.

I was asked this week what I say when I am asked how many children I have?  Always four, I always will have four children, I replied.  She may no longer be here but she will always be with me, every single day.

picture of steph with Daisy when she was about 3, wearing a pink cardigan

Mother's day is hard.  That day when we celebrate motherhood.  We all have mothers, some of us are lucky to be mothers or to have made the choice to have children.

I always wanted children, just not straight away.  I'm so glad Andy and I waited for a few years.  I'm so lucky that I met him when I was young so that we were able to have that time together, to cement our relationship, BC – before children.  It seems like centuries ago, a completely different world away.

When Life Gives You Lemons: Lucy Watts MBE

I'm delighted to launch a new series on my blog today, it's called When Life Gives You Lemons.  Over the years I have had the pleasure to meet and get to know some incredible people, many of whom have faced adversity and have decided not to be defined by this but instead to seize the day and make the most of their situation.  Andy would always say "When life gives you lemons, make lemonade!". It as always been the spirit by which I have chosen to live my life so I thought it was about time I shone the spotlight on some other people who are also making lemonade.

Today I would like to introduce Lucy Watts MBE.

 I first met Lucy online about 5 years ago and got to meet her face to face in 2014  I was speaking at an event for the children's Palliative Care Charity, Together for Short Lives and Lucy was there also with her mum Kate in her role as a young ambassador for the charity.  We have stayed in touch ever since and I am so glad that she was also able to meet Andy.

Lucy in Trafalgar Square with her assistance dog Molly