Weather warning! Birthday approaching

By |2021-10-11T13:38:39+01:00October 11th, 2021|Categories: #bridgingthegap, anniversary, birthday, Carers, disability, expectations, hope, mum of child with disability, Uncategorized|

It’s the 11th October 2021, there is a severe weather front closing in and I have written about it before. I’m braced for impact. It’s my son’s 16th birthday tomorrow I am full of so much joy, pride, gratitude and love. I am brimming with heartache, loss and grief. Weather fronts are the transition boundary [...]

5 reasons why my son has a DNAR

By |2021-03-19T11:46:41+00:00March 19th, 2021|Categories: #bridgingthegap, acceptance, communication, disability, DNAR, effective communication, Learning disability, parenting a child with disabilties|

It is reported in the BBC news yesterday (18th March 2021) that over the past year the CQC has identified 508 “Do not attempt resuscitation” (DNAR) orders which were inappropriately put in place without discussion with the person or family involved. There is evidence to suggest this is happening more frequently for people who have learning [...]

Lockdown: Caring isn’t cancelled

By |2020-04-16T12:27:00+01:00April 16th, 2020|Categories: #bridgingthegap, Carers, community, disability, family, Lockdown, Uncategorized|

Medications 7 times through the day and night isn't cancelled. 24-hour PEG feeds aren't cancelled. Hoisting and toileting isn't cancelled. 24-hour postural care isn’t cancelled. Personal care isn't cancelled. Cooking, cleaning, educating, playing, resting isn’t cancelled. Contacting and negotiating with professionals isn’t cancelled. Visual stimulation, sensory stimulation and active movements aren’t cancelled Trying to keep your [...]

We cannot be measured

By |2019-03-07T08:05:54+00:00March 5th, 2019|Categories: assessment, communication, disability, mum of child with disability, Respite|

An open letter. I respect you. I really do. You obviously care and have years of experience. You haven't had a personality transplant to take this job. You want to help people, to help families like mine. You are in such a difficult position. You're the face of the bureaucrats. The ones who get to say [...]

(Not) Easy like a Sunday morning

By |2018-10-16T09:36:50+01:00October 12th, 2018|Categories: cerebral palsy, disability, easy, family, weekend|

What is easy about a weekend? I often get that Monday feeling on a Friday afternoon. It marks the start of me juggling the expectations and responsibilities. The struggle to rest, relax, have family time and 24/7 care. The Commodores classic 1970’s hit song, Easy like a Sunday morning, was a song on a jazz [...]

Learning to cope with the staring stranger

By |2022-06-08T09:52:52+01:00July 30th, 2018|Categories: cerebral palsy, communication, disability, emotions, expectations|

It’s the summer holidays. It has rained a whole of two days and siblings around the country are complaining about the most mundane things. Like, “MUM! He’s looking at me funny. Tell him to stop." My eldest brother used to complain I breathed too loudly whilst he was watching the TV. He certainly used to stare [...]

The moment everything changes…

By |2017-10-19T06:04:29+01:00July 4th, 2017|Categories: disability, expectations, hope, mum of child with disability|Tags: , , |

A defining moment can happen anywhere, for us it came at ten weeks old, in the Hammersmith hospital in London. It was the line in the sand that once stepped over, there was no turning back. ‘When my son was in the scanner for longer than expected, a battle began in my mind. Was this a [...]

A world of conflicted truth

By |2021-03-11T14:30:25+00:00May 17th, 2017|Categories: disability, exhaustion, expectations, Mother of child with special needs, mum of child with disability, Tearful, Truth|

The truth is my son is wonderful. It’s true our lives are good. It’s true I am lucky and blessed in so many ways. It is true he is precious and unique, loved and created. It’s true he fills our home with love and has taught us all how to be better humans. It is true that [...]

Is it too much to ask, to not have to fight?

By |2021-03-11T14:33:39+00:00February 23rd, 2017|Categories: Changing places, disability, fighting, Mother of child with special needs, mum of child with disability, Uncategorized|

**WARNING IMAGINATION REQUIRED** Imagine me in a Miss World competition. Obviously to do this, you'd have to believe I've abandoned any feminist ideals, grown a foot in height, enhanced my breasts and shrunk my waist. But, bear with me... Should I ever be a contestant on Miss World and the MC asks me what would be my one wish, it probably wouldn't be 'World [...]

I’m not a Supermum…and that’s ok.

By |2018-06-04T09:42:09+01:00February 19th, 2017|Categories: disability, exhaustion, expectations, family, Mother of child with special needs, mum of child with disability, Simple Stuff Works|

For about three seconds in 2005 (the year I became a mum) I thought I could be a SuperMum. It didn’t last long. Unfortunately, I spent a few years trying to pretend to be a Supermum. Every morning I donned my Lycra suit and tried to trick everyone into thinking I’m Superwoman. Having a son with severe disabilities meant [...]

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