And then she was gone

picture of daisy in minnie mouse ears

You were here and now you are gone and my arms ache for you.

Did I do enough?

Did you know how much I loved you?

Did I spend enough time just being your mummy?

My lovely girl.  My Daisy Rose.

picture of daisy when she was 7 at the hospice

I miss you so much.  We all miss you. We miss your voice calling for us, the way you chose which sibling would have a hug depending on what you needed them to do for you.

I miss our cuddles, our special times together.  Chatting to you and telling you funny stories to keep you entertained on the endless trips to hospital for appointments. Singing together as I set up your infusions.  Answering your endless questions.

I avoid the shops you loved, it hurts too much to remember your request for shopping, for money, for big girls clothes, for a new toy....

I talk to you a lot, I dream of you a lot.  I wave to you in the stars.

picture of daisy in a pink garden chair smiling and waving at the camera

The house echoes with emptiness.  The silence is deafening.

When you died I switched off your beloved ipad, with all your music and TV shows and games and photos.  I have not switched it back on since.  It still has your fingerprints.  Tomorrow I'm going to turn it on again.  Once more the house will be filled with your soundtrack.

I'm reliving every last moment. It pains me that you were in so much pain at the end, that you were poked and prodded in your last hours.  But we didn't know.  We had been so close to the edge so many times, every time you let us glimpse into the abyss then you turned the corner and came back.  This time you didn't, I knew you were so tired.  You had been tired for so long.  Since daddy died.  your beautiful spark was gone and you tried so hard but it was all such an effort.

Daisy sitting on a stairlift in a pretty dress holding a pink rucksack

And I knew, at the end, it was time to let you go.  And much as I hate the thought that your last hours were filled with fear and pain I am glad we were able to reclaim you and bring you home again. Bring our girl home just as you asked.

I hope that you knew how much you were loved.  How we made sure that we fitted in a lifetime of memories into your 12 years.  We did so much, everywhere I go in London there is a memory of a place we went together, time spent together, precious time.

Daisy playing with lego and cuddling pluto her dog

I always knew our time was going to be short, I could never imagine that we would have the gift of twelve years with you.  Yet I want more, just a last hug, to hold you in my arms, to feel your little curly head against my cheek.

I hope I did enough, I hope you were happy, I hope you knew how much you were loved.

Steph holding a glass of champagne and daisy looking at it

I was so lucky to have been your mummy.


22/12/04 - 31/01/17


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.