Dear Doctor

Dear Medical Professional,

You will ask about his medical history,
And I will repeat the story I have told 100 times or more,
The details fine tuned to the essentials I know you need:
He was born full term,
He has a 7 year old brother who is fit and well,
He is allergic to penicillin. 

You will ask me what happened,
And I will answer:
He is 6 years old.
He wasn't breathing for 7 minutes.
I gave him mouth to mouth.

I will hand over a careful typed piece of A4 paper.
It will tell you his hospital number,
The things he is allergic to,
A list of medications and doses.
You will take it and smile.
You'll tell me I make your job easier.

I will stand calm,
And in control.  You see my demeanour,
my hospital bags packed and ready,
And you say,
You've done this before.
I'll nod and say many times.

But remember this; That 6 year old is my baby.

That boy with the oxygen,
And the wires,
And the tubes,
Is my son.

I watched him turn blue. The first time,
The fifth time,
The hundred and fifty fifth time...
It was still …

Children's Hospice Week 2020



This week is #ChildrensHospiceWeek (22nd-28th June).

When Hugh was 16 months old he was assigned a palliative care nurse and it was suggested we access support from the local hospice - Acorns Children's Hospice . I was horrified - a hospice was no place for a baby .. my baby!

Head firmly buried in the sand, I avoided the topic for some time, but eventually, the realisation that Hugh's big brother Sean was missing out on a childhood while his parents were preoccupied with keeping his baby brother alive, prompted me to visit the hospice ad accept the help we so desperately needed. 

Far from being hospital-like and depressing it was warm and welcoming. And we've been an 'Acorns Family' ever since.

Over the years the support has differed according to our needs; 
We've had day care, overnight stays for the whole family and overnight care just for Hugh
Sibling support groups for Sean where he's met and made friends with children with similar home situations - they've been to the theatre, taken part in drumming workshops, made 'feelings jars' or just played and had fun.
Parent support groups - for mums and dads ( though Stephen hasn't accessed the dads one). I've been on coffee mornings and spa days with other Acorns' mums.
Family days out to the zoo and the cinema amongst others where, for once, having a feeding tube and oxygen and a wheelchair isn't a spectacle.
Holistic therapy


Hugh and I helped make this promotional video for Acorns with the aim of showing those who feel nervous about accessing support from a children's hospice, just like I was, realise that it's nothing to be fearful of and can actually be a huge help.




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