Sheffield Childrens NHS Foundation Trust

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We treated nearly 200,000 patients in 2014/15.

Parent stories

Parent stories

In 2013 The Children's Hospital Charity's arts programme, Artfelt, led a writing project to record the experiences of parents and carers who had spent time in hospital with their children.

Local author Beverley Ward worked with parents at Sheffield Children's Hospital to help them express their feelings through poems and short stories, some of which are shared here.

The collection was published as the booklet 'Parent Stories'. If you'd like a copy of Parent Stories please contact Artfelt.

If you are affected by any of these stories or if you'd like to talk to someone about your experiences in hospital, please contact Linda Towers in our Patient Advice and Liaison Service (PALS) on 0114 271 7594.


 

Wanted

Three pairs of hands and a good night's sleep.
No more appointments that we have to keep.
Days that begin without a cocktail of drugs,
just cuddles, and playtime, hugs and more hugs.
To wake to the sound of my baby singing,
not crying through the monitor, my heart sinking.
A friendly GP who understands
the toll that it takes, these constant demands.
The opportunity to say a simple, "he's fine"
when friends ask how he is, and to mean it this time.
Two lungs that work, a fresh start to breathe.
A cure for this and all disease.
Enough foods to make a feast fit for my king
and to never again have to enter this building.


The difficult things

The night times:

Lack of sleep,
the frequent interruptions to give medication,
being too hot and my special needs son
singing and talking,
talking and singing
until very late!

Waiting:

Waiting for treatment.
waiting to speak to people.
waiting for information.
waiting to see what will happen next.
Just waiting!

Finding my way around:

The lack of anything to do,
just reading and watching TV.

The outcome of the treatment:

It has not met our expectations,
although it has been successful
and there have been no subsequent problems.
But coming to terms with the fact
that he will probably not walk
independently again
has been difficult emotionally
and also practically.


Why?

I have asked "why me, why us, why him?"
But no one can answer, no one will. I have cried rivers of
tears and walked miles of hospital corridors,
Yet still I am no wiser, just tired and frustrated.

People tell me "he looks so healthy"
But they can't see within,
They didn't seem him in PICU all standing around:
the tubes, the wire, the beeping machines
and whispering and muttering.

He has had surgery five times when not even turned 2,
I guess that this must mean its serious
Although I really haven't got a clue or
is it not wanting to have a clue?

I suppose the clue is in the title: Congenital Heart Disease.
It's in his genes, nothing, I did or should of have done.
So when I ask why
No one can truly answer.

It feels like someone has handed us a death sentence,
But not telling us when they will call it in,
But with each new day, comes new discoveries,
And learning goes on.

He gets tired easily, has eating problems,
Goes blue when out of breath,
His lung is not fully functioning,
But it doesn't stop him.

He is determined to keep up
With his four fab brothers,
Although can never play rugby or football:
We will cheer from the sidelines.

I try so hard not to think of the future,
I shed a tear or two but no more as I need to be stronger.
It's easy to say but harder to do,
But I will and I can for the sake of my son.

Despite all this worry,
His smile melts my heart,
Each little hurdle he overcomes
Shows how far he has come.

The clue to living with this disease
Is to live each day to the fullest and to not think about
the 'what if's'
As tomorrow is a new day and our prayers may be answered
by That magic fairy Godmother or a fantastic scientist.

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