motherhood

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

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

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

Meeting Chiara and Natalie

Meeting Chiara and Natalie

I am proud of the fact that my guests on the podcast are from all around the world. I want to show both the universality of our experiences and the differences. It does mean, however, that I will likely never meet most of my guests. After I talk to them… Read more

Privacy vs popularity – A response

I started writing about Eva before she was born. Back then I referred to her as “the Peanut”. I kept calling her that for a while after she was born in a slightly misguided effort to give her privacy. The reality was that my blog was not anonymous, so by… Read more

Invisibilia: The problem with the solution

Invisibilia is one of those podcasts which never fails to impress me. Every episode is beautiful, crafted, intelligent and interesting. Every episode leaves you thinking about some aspect of the world in a new way. This episode was no exception. In fact, it may be my favourite episode from either season.… Read more