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Children’s Hospice - Another world

Children’s Hospice - Another world

At the other end of the long corridor facing us stands a little blonde girl about two years old wearing a white shift dress.

We stare at each other in silence for ages, both mesmerized by the other until she laughs and runs bare footed into one of the rooms nearby. The spell is broken instantly and in rushes a flood of tears that literally shakes my Mum off her feet.

Tears of anger, horror, fear, hatred even that life has brought us to be standing here at this moment.  A tidal wave of pent up frustration which up until now has been managed admirably well for five years but is let loose by the innocent charm of this beautiful little stranger.

Half an hour before, we had all been crying tears of a different sort, ones of joy.

We had taken my daughter to the Hydrotherapy pool next door and for the first time in three years, my Mum had been able to hold her granddaughter helped with the buoyancy of the bath warm water.  They had laughed manically, twirled and splashed and squealed with delight.

The 65 years age gap vanished as both overcame their physical limitations and became equal in the water. It was a truly magical experience that I will always remember and which without doubt cemented their bond with each other forever.

Back here in the corridor however, the reality has hit home that to access this wonderful facility, we have had to join a club that neither of us dreamt of.  On either side of the corridor are bedrooms each beautifully decorated with cheerful characters, butterflies and castles.  Each shares a large en-suite bathroom and has a view outside onto a peaceful garden.  Each is equipped with state of the art monitoring equipment, special beds, oxygen on tap and emergency alarm call systems.

The larger room on the left is an office where real life angels work and part of their role is to look after terminally ill children staying here.

We are stood in a children’s hospice.

We have accessed this special place because my daughter has a life threatening form of epilepsy.

We also need respite now and again and are able to get it here, safe in the knowledge that she is in the best possible care.

When we first visited I felt like a fraud, thankful that my girl was not terminally ill and slightly guilty to be accessing the services.

A year on however and I have learned that as well as this hugely important role, the hospice also offers a fun safe place to play, make new friends and get a break in the company of other special needs families.

Our three generation party of girls still go swimming here and we have now been to parties too, celebrating being members of this special club that we once knew nothing about.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Sam Bowen

Meet Our Blogger

Hi I’m Sam, Mum to Lucy who is has complex special needs but is the happiest person I’ve ever had the pleasure of meeting! I own Hip-Pose Ltd, a brand of clothing I designed for babies with hip dysplasia (which Lucy had). I’m also a fundraiser for her school PTA and in my spare time (if I get any!) I sew and make crafty stuff.

View Sam’s Profile

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