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

I'm thinking about the children who were scared when they arrived for medical appointments at the hospital they trusted to be faced with banners emblazoned with the word "murderers".

I'm thinking about the peace and quiet on the intensive care unit as we sat with Daisy for our final hours.

I'm thinking about the staff who held my hand because there was no-one else to hold my hand.

I'm thinking about the nurses who lovingly and carefully washed Daisy's body with me and laid her out under her favourite blanket after her ventilator was switched off.

I'm thinking about the Doctors who came to pay their respects to Daisy after she died, tears in their eyes when they told me how much she meant to them.

I'm thinking about the staff who came to Daisy's memorial service at the hospital that had cared for her for twelve wonderful years, the staff who sobbed openly as they gave up their lunch break to say a last good bye to the little girl who they had loved almost as much as I had.

Tonight I think about a mum in Liverpool

All of the mums, and dads, and parents and grandparents who love their children.

I'm thinking of those of us who made that final, selfless decision to let our child go.

I'm thinking of those of us who know that we did absolutely everything we possibly could for our child.....

The bereaved parents. The ones on the other side.

My friend posted on twitter today that she was scared as she sat next to her daughter's hospital bed.  The daughter she was so worried about, the daughter who has already spent 3 long months in hospital, so very poorly.  She's scared because the staff who are caring for her daughter are worried about what is going on outside.  The braying mob who are accusing them of keeping a another child in the hospital  hostage, of being murderers.

What have we come to when mob rule is taking the place of collaboration?  When social media becomes the judge and jury, when people take matters into their own hands?

When you are pregnant, whether it is with your first or your fourth, you dream about what your child will do, the life they will lead, who they will be.  In Andy's mind his boys would be fighter pilots and strikers for Arsenal.  When you are told that the child you dreamed of is disabled, will not walk, will not talk, will not live to see adulthood, you grieve.  You grieve for your lost child, the child you thought you had, you grieve for the loss to come, their early death.  Grief makes you sad, it makes you angry, it makes you hate the world.  But as a parent the grief is yours alone, it is not there to be hijacked by others for their political or moral gain.

I am not Charlie's mum, I am not Alfie's mum.  I am Daisy's mum.  As Daisy's mum I knew that my grief was all consuming, I needed people to help me make decisions, I needed to work with my team who were able to be objective but compassionate.

I tried to do the right thing, I tried to be objective , although I knew that Daisy was really poorly, it's not until I look back at the pictures that I realise how poorly.  How we had reached the point of no return?  I am so grateful that I had a team of trusted professionals around me to support me and guide me, because at the centre of it all was a little girl. I knew that I had to to the right thing for her.

I did not want to prolong her suffering, the inevitable.  I wanted to let her go peacefully, with dignity.

The end was calm.

The end did not come with frantic last minute interventions, to strange countries, where they did not speak my language, with more surgery, with more tests. With the same inevitable outcome delayed, but inevitable.

On a recent visit to my GP I laughed at the mug he had on his desk "do not confuse my medical degree with your ability to use google".  What has happened to the world when we no longer trust and respect our medical teams?  When vigilante mobs accuse nurses and doctors of murder?

What are we saying to children when they are dragged along to these demonstrations to scream abuse at nurses entering the hospital for a shift?

Doctors and nurses who are themselves parents, who fight to keep children alive, who not want to see children suffer needlessly, who are human beings.

At the centre of it all is a child.  The child is the most important person in all of this.  Medical science is incredible but sometimes it cannot work miracles.  Sometimes children die.  Sometimes we have to let go of our dreams of our child being a fighter pilot or a striker for Arsenal, sometimes we have to let go.

My thoughts are with Alfie and his family tonight.  My thoughts are with the staff who care for the sickest children and support parents through the hardest decisions they will every have to make.  My thoughts are with all the parents trying to do the best for their child.

My thoughts are once again with all of us bereaved parents who are forced to relive our decision and know that when it came to it we did the right thing for our child.

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