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

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

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

We cannot be measured

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 ‘No”, without having to [...]

Losing control

Ever feel like you are losing control? One of the first things to disappear, when I became the parent of a child with complex needs, was a sense of control. Once I foolishly thought I was the master of your own destiny. Suddenly, the weeks ahead of me were moulded and shaped by a growing list of professionals and [...]