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

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 [...]

(Not) Easy like a Sunday morning

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 and soul compilation album [...]

By |October 12th, 2018|Categories: cerebral palsy, disability, easy, family, weekend|0 Comments

Dear Professionals…

Dear Professionals, I’m not sure where to start because there are so many of you. Maybe you’re one of the many therapists (OT, PT, SALT) who collude and agree when it’s best to meet and then ask I adhere to your agreed date and time. Please know, I’m grateful for your input, skills and knowledge. I know you are [...]

By |October 7th, 2018|Categories: Uncategorized|0 Comments

Children shouldn’t come first

I’ve heard it said, that children come first. We say it in lots of different ways; ‘It's the kids that matter.’ ‘You need to do what’s best for the children.’ Although I am passionate about the rights of children and their well-being, in our family at least, children don't come first. I have come to see that it is an [...]

By |October 3rd, 2018|Categories: exhaustion, family, Mother of child with special needs, parenting|0 Comments