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

“This is Bob, he has piles.” (Co-production week 2020)

Ever been at a work’s do and introduced a colleague by listing off their most recent failures or ailments? “Hi, Steve, this is Bob. He has piles and dropped his laptop yesterday smashing the screen. 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 [...]

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. Our values, way of life and priorities have been challenged. For parents who have children with complex needs, we’ve been here before. We know what it is like to have our world turned upside down. To feel loss and yet incredibly grateful. To be aggrieved for events not yet [...]

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

Behind closed doors

There is more to me than you can see. I don’t show my vulnerabilities because that is not how it should be. But when I dare to look into your eyes, I know you are a lot like me.   I wake in the night, worrying about what more I should do, but you only get to experience the aftermath of [...]

Island life and bridging the gap

Being the parent to child with complex disabilities is like living on an island. The surrounding people each reside on their own islands which on the surface appear similar but feel worlds apart. To others, my island looked just like theirs, but I knew it was so very different. Although the other islands were not too far away, there were [...]

By |July 12th, 2019|Categories: #bridgingthegap, communication, community, expectations, Island living|0 Comments