Always in my heart
Always in my heart

Somehow it seems to get harder as time goes by.

Reaching that “new normal” is done and dusted.

To the world I am “fine”. I am coping and made a resounding success of Vic’s dying wish… Stepping Stone Hospice is going from strength to strength. I however am more fragile than ever. I long for the day that I will see my child again.

I live for that day.

I am grateful for the boys and that they give me a reason to live.

I however feel more angry with the doctors and the medical world as every day goes by.  With the knowledge that I have acquired through Stepping Stone Hospice, I have come to realise that Vic did not have a “good death”.  At the time I thought I had done a good job.  Now I realise that, in my ignorance, I failed Vic.

Vic wanted to die at home.  I wanted Vic to die at home surrounded by her loved ones in the comfort of her own bed.

Today I know that it was not the “best” for Vic, me or the family.  Firstly, I was Vic’s primary and sole caregiver.  I did not have the luxury of mourning her final days as a mother.  I was “in control”.  I washed and medicated my child.  I moistened her lips.  I brushed her hair and changed her pj’s.  I made sure that everyone got fed; that the household continued running,  I continued to blog and journalise her final journey.  I smiled at friends and family and encouraged them.  I remember my despair at Vic’s fear (which I now recognise as terminal restlessness); the agony of whether to sedate her or not.

I remember very little detail of the last weeks.  I do however remember the horrific exhaustion.  I remember allowing Vic to remain in the same position for two days.  Her Hospice nurse never told me how important it is to turn Vic every two hours… I thought I was sparing Vic pain by not moving her.

I now know I caused her pain and discomfort by not turning her.

A memory that will haunt me for life is the bruising on Vic’s body.  (Blood coagulates as the body system slows down.)

Yet I function.  I attend meetings; I run my home and Hospice; I laugh; I smile…And then I cry.  When I am alone I indulge in my memories of my child.  I look at old photos.  I listen to old voice messages that I recorded.  When someone walks into the room I will smile and act as if the world is my oyster.