Blog2019-03-16T09:58:13+00:00

Sunrise and chronic sorrow

I went for my weekly sunrise walk with a dear friend this morning. It started a few months ago in lockdown as yoga on the beach (45mins talking, 10mins yoga) but as recent weeks have brought the cold, we have taken to walking, talking and clinging onto steaming mugs of tea and coffee.   Going from the darkness to light [...]

Why I am PROUD of my son’s attendance award.

“Why my son won’t be accepting his 100% attendance award” went viral 4 years ago. The photo of one 9-year-old‘s left ear went round the world and was seen by millions of people - along with my rant about how much I dislike 100% Attendance Awards and how, in my opinion, they undervalue community and compassion. A lot [...]

By |July 17th, 2020|Categories: Uncategorized|0 Comments

“This is Bob, he has piles.”

Ever been at a work’s do and introduced a colleague by listing off their current ailments? “Hi, Steve, this is Bob. He has a stammer. Bob, meet Steve, he’s can’t sit for long because of his massive piles.” Of course not. I don’t introduce myself as, “Hi, I’m Rachel. I broke my wrist last year, ruptured my EPL and needed [...]

By |July 9th, 2020|Categories: Uncategorized|0 Comments

Leaving lockdown

If you had told me six months ago that any of the support we relied was going to be taken away from us as a family (until further notice), I would have considered locking myself in my bedroom. Ask me to home school ANY of my children = tears (there is a reason I am not a primary, secondary [...]

Reimagine a new way.

The world is reeling. It has been shaken to the core. The rhythm of our lives is untethered. Christmas won't be the same. New year celebrations won't be the same and all of us are clinging to the hope of a vaccine. Our values, way of life and priorities have been challenged. For parents who have children with complex needs, [...]

Lockdown: Caring isn’t cancelled

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 family safe isn't cancelled. [...]

By |April 16th, 2020|Categories: #bridgingthegap, Carers, community, disability, family, Lockdown, Uncategorized|4 Comments