Parenting

Rare Disease Day – my speech

Rare Disease Day – my speech

Last week I gave a speech for the New Zealand Organisation for Rare Diseases on Rare Disease Day. It was just 3 days after Eva’s anniversary and I was a bit worried about how I would cope. I managed to get through till the last paragraph before I cried, so… Read more

Two years since she died

Two years since she died

It’s hard to believe it has been almost 2 years since Eva died. Eva was only here for 10 and a half months, less than half the time she has already been gone, but I will feel her loss and the hole she left behind her for the rest of… Read more

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

Emily Writes – Rants in the Dark book launch

Emily Writes – Rants in the Dark book launch

When you’re a new mum you need all the community you can get. Sometimes it’s hard to find a community you gel with. Mothers can be judgmental. One mother who is not judgmental, and who has made it her business to share the ins and outs of parenthood and build… Read more

What does it mean to be a mother?

What does it mean to be a mother?

What does it mean to be a mother? Does it have a definition we all agree on? Is there a difference between being a mother and a parent? When Eva was born and her diagnoses started rolling in, I was desperate. This wasn’t the role I signed up for. A… Read more

Thank you, thank you, thank you!

I’m feeling a bit emotional today, in the best possible way. And I wanted to say thank you to everyone who has supported me  and read my posts, listened to the podcast and voted for me when I nagged at you to do so. I asked you all recently to… Read more

Can I be a feminist and a special needs advocate at the same time?

Two days ago I wrote a piece for The Spinoff Parents. I had just seen an article about Sally Phillip’s documentary “A World Without Down Syndrome”. In the Guardian article she discusses her concerns over making the non invasive screening tests for Down Syndrome available through the NHS. After reading… 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

AMP Scholarship – please vote for me!

Since I started the podcast I’ve invested quite a bit of money into it. I bought all my own equipment and pay monthly subscriptions for a number of online services to keep in running. I’ve done all this because this project means a huge amount to me. But gosh, wouldn’t… Read more

Radio NZ Interview

I did this today. I went on Radio NZ and talked about the podcast live on air. I talked about Eva, about parenting about relationships. I was nervous, but it was a fantastic experience. Thank you to RNZ for having me! Read more

Playing sliding doors

Playing sliding doors

It’s been 18 months since Eva died. Saying that number, 18 months feels cruel. She only lived to 10 months, and already she has been gone longer than she was here. To someone who meets me now, there’s no indication that I am Eva’s mother. No indication that I was… Read more