Medical conditions

Disability as a unique demonstration of diversity – not misery

A woman kills her 20 year old daughter and the public’s response is to call it a mercy killing. Donella Knox murdered her 20 year old daughter Ruby, who had severe Autism spectrum disorder and intellectual disability. The Herald reported that Ruby had a number of associated conditions in addition… Read more

Dear Mamas podcast with guest, The One in a Million Baby

Before Christmas I got together with two fantastic women, Emily Writes and Holly Walker, on their podcast Dear Mamas which features on The Spinoff to talk about what it’s like to be a parent when someone in the family has chronic illness, medical needs or disability. We discussed Eva and… Read more

Parents sue over birth defect – can we blame them?

A New Zealand couple living in Australia are suing the medical professionals who allegedly failed to identify the condition for $2.5 million in damages. Their daughter, Aria, who is now two years old was diagnosed with Aicardi Syndrome after an MRI scan revealed the condition. Aria has impaired vision, hearing loss, scoliosis,… Read more

The true meaning of beauty

The true meaning of beauty

In the last few weeks I have been taking some active steps to help myself. I could feel, and can feel, a hint of depression crawling back into my chest. I feel tired constantly. I’ve stopped running. I’m drinking too much. I want to change that. I can’t rid myself… Read more

Sign the petition – give Lily a new heart

Sign the petition – give Lily a new heart

I was listening to some people talk about language the other day. They were discussing racial slurs and slurs aimed at the special needs community. They seemed to agree that racial slurs were not ok under any circumstances, but when it came to special needs slurs (we all know which… Read more

We are all different

We are all different

There’s this strange dichotomy in the world of special needs. There’s the parent on the one hand who says, “I love my child and wouldn’t change a thing about them”. And then there’s the relieved mother who gets a 12 week pregnancy scan of her second child, after having a… Read more

A call for help – Centronuclear myopathy

A call for help – Centronuclear myopathy

I got an email today from a friend. She said there was a family in Wellington who needed help. Their infant daughter, who is 11 weeks, has just been diagnosed with Centro-Nuclear Myopathy.  They have been in the NICU for 11 weeks and while they have a dianogis, there are… Read more

The podcast – how you can listen in

The podcast – how you can listen in

If you are new to this blog, or just new to podcasts, I thought I’d just take a moment to introduce you to this side of my site. In October I launched The One in a Million Baby podcast. My plan was to create a resource for new parents who… Read more

The right decision

The right decision

A few months ago a woman reached out to me through facebook. She was pregnant and the 20 week scans had revealed real problems with the baby. I won’t give too many details, because this isn’t my story to tell, it’s her’s and her family’s. But I will say she… Read more

That old chestnut 

I was reading a special needs mothers’ facebook page today and had to catch my breath for a minute. There was a comment on there  in reaction to a blog post that I felt so strongly about. It wasn’t ableist, or offensive. It didn’t use language that offends in the… Read more

Episode 03: The call is recorded – what an honour

Episode 03: The call is recorded – what an honour

This morning I talked with Natalie Roberts about her journey with her daughter Chiara and her husband Mauro and their older daughter, Grace. I have followed Natalie’s blog Chiara’s Journey. You can read more about them through their facebook page as well.  Chiara’s journey started as a simple treatment for… Read more

Heart Stoppers

Yesterday students and teachers at my school climbed into kids swimming pools full of icy water as part of the Heart Stopper Challenge which raises money for the Heart Kids NZ. Before Eva was born they spotted a hole in her heart. An atrial septal defect, or ASD, which turned… Read more