Parenting

I haven’t totally disappeared

It’s been a while and I’m sorry! Life has been busy. I’ve switched jobs from teaching to content writing and the shift and change of pace is taking quite a bit of energy and brain space. It’s been fantastic, but when I finish work at 5pm (instead of 3.30pm like… Read more

Why I do what I do

Why I do what I do

Over the year I’ve been actively following, listening to, and engaging with as many disability self advocates as I can. I’m aware of my abled position of privilege as an ally, and I’m trying to use the right terminology, and pass the mic, and generally just nott fuck it up.… Read more

Guest interview – Achievement Center of Texas

Guest interview – Achievement Center of Texas

On almost a weekly basis I get an email from an organisation asking to write a guest post for The One in a Million Baby. It’s not something that I do with the blog, but I always appreciate the emails, especially when they come from organisation that are doing good… Read more

Autumn – hues of technicolour depression

Autumn – hues of technicolour depression

We’ve had a terrible summer. The weather never seemed to realise we were waiting in our shorts and singlets, and it held out on us for months. We had days, not weeks, of sunshine, and then suddenly, it was March, and Autumn was upon us. Eva was born at the… Read more

I see a girl…

I see a girl…

I have this photo on my phone of Eva. I spread the apps out across my phone so that there’s a screen with just one app and I can swipe through the screens until I reach her face, free from apps in the way. It’s the face I see before… Read more

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

Ms. Harrari, is it you that gets to define quailty of life?

On August 6, The Sydney Morning Herald published a story entitled “Parenting an intellectually disabled child: life forever on duty” about Alex Brown and his mother Vanessa. Alex is a 22 year old man who has Sotos syndrome. He is non verbal and has an intellectual disability. He spends week days… 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

What didn’t happen

What didn’t happen

When Eva died, she had so many big things coming up. She was getting her hips and eye operated on. She was going to get a G-tube placed so she could finally have the tape off her face and the NG tube out of her nose. She was going to… Read more

Episode 10 coming soon!

In May I got prolific with the podcast and put out two in a month. This month, has been less productive. I haven’t managed to record until the weekend just been and I’ve watched the 1st of July sneak closer and closer with no material. I realised something, it’s hard… Read more

Washington Post’s Top Parenting Podcasts – we’re in there!

Washington Post’s Top Parenting Podcasts – we’re in there!

I didn’t have my phone on me yesterday. The usual vibrations and alerts didn’t reach me. During period five, when my year 13s were working hard on their writing, I checked my personal email. It was full of alerts that people were tagging me in posts on Facebook. I wondered… Read more

Feature in the SOFT UK newsletter

Feature in the SOFT UK newsletter

A few weeks ago I was contacted by a representative from SOFT UK, which is a charity that provides information and support to families affected by trisomy 13 (Patau’s syndrome), trisomy 18 (Edwards’ syndrome) and related conditions. They provide support through the many stages families may find themselves in from… Read more

Singing in the shower

Singing in the shower

Last night I was talking to my boyfriend about the things we do when no one else is around. He admitted that he sings in the shower – I doubt I’ll ever get to hear it, but it made me smile. He asked if I did, and when I thought… Read more

Mother’s Day – in recognition of a special group

Mother’s Day – in recognition of a special group

It’s Mother’s Day in New Zealand tomorrow. Last year I wrote a sort of ode to the other mothers like me who find Mother’s Day harder than most. I wanted to recognise all of those mothers who weren’t necessarily feeling like the mother they were that day. Perhaps, like me,… Read more

Let’s show her what it really looks like

Since posting my letter to Education Minister Hekia Parata, I have had a brain wave. Someone mentioned I should start a petition and I like that idea, but then I got another comment. A mother told me about her two kids who both have special and extra needs. She said… Read more

An open letter to Hekia Parata

Dear Ms. Parata, You’re reviewing and overhauling the special needs education system right now. You’ve said you won’t be increasing the $590 million budget at this time, and instead will be focusing on efficiency and simplification. If you were a real estate agent that’s the equivalent of calling a tiny,… Read more

Thank you and I miss you and I love you

I’m scattering Eva’s ashes this weekend. I’ve arranged for flower petals to scatter with her and I’ve asked the people who will be there to say a few words for Eva. Eva’s foster parents will be there. My parents. My sister and her partner, Eva’s aunty and uncle, will also… 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

There's a battle going on

There’s a battle going on in the special needs community.  I first became aware of it when I followed a link a mother had posted on facebook to Lauren Swick’s article in the Washington Post. In the article, entitled Writing for the Mighty, for my son and with my son,… Read more

My flame burns the brightest 

My flame burns the brightest 

I have shared so much about my life with Eva, my readers, and anyone else, could understandably think I don’t value privacy at all. I share Eva with the world, so you could assume I don’t feel protective of her memory. It’s something I have thought a lot about as… Read more

The City that never sleeps

The City that never sleeps

They say NYC is the city that never sleeps. I don’t know that I’ve been making the most of that aspect of the city, but it did make me think of other things. This city is so big. There are so many people in a relatively small area. Buildings loom… Read more

Two stops down

Two stops down

I landed in Minneapolis on Saturday afternoon. As I was walking towards the baggage claim, imagining meeting the first of my Mama facebook group, I started to feel my throat getting thick in anticipationg of tears.  At moments on my flights over here, feelings of panic rose in my chest… Read more

New beginnings mean saying goodbye

New beginnings mean saying goodbye

In two sleeps I am getting on a plane and travelling to Minneapolis, Minnesota on a seven week journey around the USA to meet some wonderful women. I have been planning this trip since April this year. I started planning it when I discovered that my Mama’s facebook group had… 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