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.

Steph wearing glasses and holding a notebook looking to her left as she speaks to an audience
Speaking at the launch party for Goodbye Daisy last week






Then it's the anniversary of hearing those words that Andy too had cancer, these things never leave you, they become the moment your life changes forever, a point in time. Of course Andy's birthday is at at the end of November, then it's my Dad's birthday, it was always the day we chose to put up Christmas decorations when I was younger, now they go up on the 1st of December in memory of Daisy's constant insistence that the tree just could not wait!

The anniversary of Andy's death is a week before Daisy's birthday.  Her birthday, the day she made her early arrival into the world and again my world changed and I became both her mother and carer.

We mark these days, we celebrate the birthdays, we remember they lived. Christmas was special this year, the first with just the four of us, no other family. It was good. The children were incredible, they decided to "do Christmas", they cooked for me, I had nothing to do but to go for a walk with Pluto and watch TV, it was the grown-up Christmas I had always craved but always, without an over-excited Daisy so utterly bittersweet.

Like many bereaved people New Year's Eve is hard, it's another year. 3 years away from last seeing Andy, two years away from Daisy....what would we have been doing? The loss of a child is so incredibly hard, there are some very tangible reminders of time-stopping...would she have outgrown her clothes by now, would her obsession with all things pink have waned just like her big siser and her infamous emo phase?  I will never know...

And now I sit here, just days away from the second anniversary of Daisy's death.  Second anniversaries are really hard.  The acute sharp pain has dulled, the relief at getting through a year intact is no longer there, now it's reality...cold and stark.

I've been struggling to find my new life now, who am I two years later?  For so many years I was a partner, a wife, a mother, a carer...now my three children are older and while they need me, they don't need me in the same way, they are finding their own way in the world and the freedom that I craved during those long and lonely hospital stays is there for me.

Late last year I was involved in a silly car accident. I ended up in an ambulance and in A&E for the day. The memories flooded back and I felt so vulnerable and alone. PTSD my doctor wrote on my sick note for work.  It took a silly car accident for me to realise that my busy-ness, my constant need to be occupied was a way of coping. Of being needed, of remaining relevant. But it was also a way of hiding from my grief.

When I stop the memories hit, the reality of what had happened. I was not telling someone else's story, it's my story.

At last I have the time and space to grieve and to rebuild. To find out who I am and who I want to be. This is the time for me that I always wanted but it's a scary prospect.  I have been scared that in moving forward I will forget, but I have learned that I will never, ever forget.  They are always with me, Andy and Daisy.  They shaped the me that I am now learning to be.

I want to find a time when I can remember the happy days with Daisy and smile, I don't want to feel pain at the thought of her pain. I'm working on that. I am a constant work in progress.

My projects and work are all about trying to make meaning of everything that has happened to me, to move me forward from these difficult days. To turn the unimaginable into a positive force for good, to change things for others.

Daisy's anniversary approaches fast and I will go to Great Ormond Street Hospital  and see her name in the memory book, I will take flowers to the chapel where we celebrated her life with our friends there.  But will also spend time doing some training, I've been doing a lot of that, training medical professionals, telling them what it is like, on the other side of the hospital bed.  Helping them see the person beyond the disease.   I am choosing to celebrate Daisy's (and Andy's) life that way.

There will be one more anniversary, the anniversary of her wonderful funeral, when we said our last goodbyes.  Then it will be spring and there will be light and life and plans.

These are the difficult days, but they are important days, these are the days that have shaped me and made me, these are the days that lead me to my new life.

picture of a hand holding a label with the words "darling daisy, we miss you, love mummy xx"
at the launch of Goodbye Daisy last week we hung labels on a memory tree, this is my message to Daisy.



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