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.

I have so much to be proud of, so many good things have happened this year.

Tomorrow I take Xanthe to University.  To start a new journey, away from home, the next steps towards her dream of a career in Cinematography.  So many memories flooding back of my time at Uni, excited at what lies ahead for her, sad that my little bird will be flying the nest.  Another loss, but this time a good one.

Theo has started an incredible role in the heart of government.  He leaves the house every morning, smartly dressed in his suit, purpose in his step.

Jules started 6th form college this week, he even surprised himself at doing well in his GCSEs, it gave him confidence to know that he can achieve....

Theo was 7 , Xanthe was 5 and Jules was 2 when Daisy was born.  Not only did I become a full time carer on the day she arrived in our lives, but they became young carers.  Hospitals became their world, unpredictability their norm.  The boys struggled with the anxiety that comes with a diagnosis of high functioning autism, school was a mixed bag for them.  I battled to get them the support they needed.  They all soldiered on, despite everything happening at home.

Then the bombshell.  They were 17, 15 and 12 when I had to break the news that their dad had terminal cancer.



 They were in the house when he died a year later.  They spoke at his funeral.  They comforted their heartbroken little sister while their own hearts were breaking.

They were 19, 17 and 14 when they gathered around Daisy's bed and I told them that there was nothing more the doctors could do and it was time to switch off her life support and let her go.

Our family has been shattered but we are piecing ourselves together, into an imperfect, but beautiful new normal.  We are choosing to move forward and celebrate the legacy Andy and Daisy left behind in our strength and resilience.

I'm so proud of my family, we will always be six, we talk about our missing third all of the time but as four we are growing strong and remain determined as ever to keep moving forward.  To keep thriving, to keep pursuing our dreams.

And me?  My life is in transition now.  I did not expect to watch my children grow older without their father by my side.  But I watch them with the shared pride I know we would both have as they start to make their way into the world.

Going back to work part-time has been good.  It's given me confidence, I've remembered why I loved working and I still am able to pursue the things that give me the greatest joy, trying to make the world a better place for other families caring for life-limited children.

The love we have for Andy and Daisy will never die, but our lives are moving forward.  And today life is good.  They would be happy to know that.



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