Medical conditions

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

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

A taste of things to come

A taste of things to come

I have audio! It’s not much. A quick teaser of the intro I’m planning to play in each episode, but it’s something. Next weekend I am having a pre-interview chat with my first subject, and then we are going to get down to recording. I have a few small kinks… Read more

Saying yes to the possibility of answers

Saying yes to the possibility of answers

I got an interesting phone call while I was in Auckland. It felt about right, to be getting a call about Eva while I was in a place that we had spent so much time dealing with her health issues. It was Eva’s geneticist who had been away in Edinburgh… Read more

Sharing the load for Issy

When Eva first came home with me a friend put me in touch with another family, from my home town, who had a little girl with very similar issues to Eva. She was blind, with micropthalmia in one eye and anopthalmia in the other. She wore a conformer in one… Read more

Avoiding the flatline

I wrote a few weeks back about meeting the couple at sign language class with the deaf eight month old daughter. A couple of weeks ago they told me there was a high probability their gorgeous girl was also blind, or at least had visual impairment. When the mother said… Read more

The non compliant baby

With all the other things going on with Eva, cardiology has been largely ignored. It’s crazy to think when I was pregnant, Eva’s heart was such a concern, and now, her heart is the thing I think about the least. She has had echoes and scans but there has never… Read more

Communication through movement

Eva is both profoundly blind and deaf. I am sure she has light perception in her right eye and maybe can see large shapes because of this, but her hearing is next to nothing. She has been recommended for bilateral cochlear implants this year, and while this is fantastic, it… Read more

I am the expert

Eva has two paediatricians at the moment. One is at the local hospital and is her main doctor, and the other is in Wellington and saw Eva when she was there in the NICU as a new born and specialises in neurological issues. Thankfully, once we move into Wellington we… Read more

Hearing aids for Christmas

Eva is getting cochlear implants in March. But in the mean time the audiologists want us to have a play with hearing aids. The idea is that we might get some sound in to the nerve, but also, Eva will get used to having things on her ears. Having CHARGE… Read more

When a community loses a member

Since the Peanut was given the working diagnosis of CHARGE Syndrome something fairly special has happened. Through the internet, being the magical tool that it is, I have been able to connect with a global CHARGE community. These parents and CHARGErs are supportive, honest, open and helpful. They acknowledge that… Read more

Christchurch, cochlear implants and some giggles

We are back from our excursion to Christchurch. The news is good. They are recommending bilateral (both sides) cochlear implants. Provided the surgery isn’t too lengthy they will be doing both of the implants in late March next year, before the Peanut turns one. They were very careful to point… Read more

Remaining hopeful – cochlear implant assessment

Tomorrow, the Peanut, me and my Mum will fly down to Christchurch, and on Friday we will meet the Southern Cochlear Implant Programme team and have her cochlear assessment. I am equal parts excited, nervous and apprehensive. I know better than to get my hopes up too high that this… Read more

A week of extremes

This week has been busy and mixed, to say the least. It started out with my last post being featured in The Mighty, a website which celebrates diversity and overcoming challenges. The piece was one I struggled to publish, because I knew it didn’t portray me in the best light.… Read more

A summer of surgeries

As I looked over my shoulder at the Peanut,  already asleep from the gas and looking very small on the adult sized gurney, I wished her problems and issues had just been spread out a bit further afield. Did they really have to all come to one baby? The Peanut,… Read more

Feature on Real Imprints

The lovely people over at Real Imprints asked me to write an original piece about the Peanut and me. I crammed a year of blogging into around 4,000 words and submitted it. You can read the first half here. The second half will feature on Thursday. Spoiler alert, we learn the Peanut’s… Read more

Not the way I do

For all my positivity and feeling optimistic about the Peanut and life in general, sometimes some things just hit me in the guts. It doesn’t have to be a big thing, and in fact it often isn’t. My whole life music has been a huge part of the way I experience… Read more

A night of lovely moments

Last night the Peanut and I had a late one. My usual bedtime of 8.30pm was pushed out to much later. No I wasn’t out drinking or partying or even at the movies. I was at my school’s senior prize giving. On this night, the year 11s, 12s and 13s… Read more

Rocking the patch

In time to step out with her newly coiffed mother, the Peanut’s eye patches arrived. We’ve only tried the leopard print so far, but I’m already a fan. Cute. And a chance to accessorize. If babies with no hair can justify wearing hair clips and head bands, this little pirate… Read more

One thing at a time

Twelve days and counting! We’ve been hospital free for 12 days, with the Peanut’s health getting better each day. For the first couple of days she still seemed unsettled and cried in the breathless way that makes me panicky to calm her down. In my head an imaginary oxygen saturation… Read more

Back in hospital

The room is one flight up, but the view is the same. I can see the cars picking up and dropping off patients, cars on the road passing obliviously by, pigeons waddling past my window. The last time I had this view, the Peanut was in the SCBU and I… Read more

She’s on the mend

She’s on the mend. She’s moving in the right direction. Slowly. Since she was admitted to Starship Hospital on Saturday night she has been switched to CPAP and off full ventilation. The nurses tried multiple times to reduce her support but each time they did The Peanut would breath for… Read more

She's on the mend

She’s on the mend. She’s moving in the right direction. Slowly. Since she was admitted to Starship Hospital on Saturday night she has been switched to CPAP and off full ventilation. The nurses tried multiple times to reduce her support but each time they did The Peanut would breath for… Read more

The first 36 hours

The Peanut has been in my official care for almost 36 hours, but it hasn’t been quite what I planned. She’s with me, but she’s also surrounded by nurses and equipment. New Zealand’s top children’s hospital is her home right now, instead of at home with me. I was due… Read more

How it feels when your life makes other people thankful for their own

Prefix: I wrote this post (including the note at the end) 10 weeks ago when the Peanut was still in the hospital. I don’t feel this way now. This post was about as bad as it got. I was angry. I was looking for someone to blame. And I didn’t… Read more

Hope is a dangerous thing

A short note: Thank you to all the people who have stopped by and left comments of support. I have continued to read all of your blogs and check up on your comments in my absence. I cannot say that this is a full return, but I had a desire… Read more

Not the post I wanted to write

I do not want to be writing this post. It has been 11 days since I gave birth to the Peanut, and I have thought a lot about how much I wish I could be writing a different post. I was supposed to be sleep deprived and potentially emotional, but… Read more

One week. Two appointments. Two very different drives home.

The first appointment was with the ophthalmologist. Our obstetrician had referred us thinking it might be helpful to hear from them before this Peanut shows herself. This was also the first appointment I was going to attend solo. Mr. Million had to work and I had told my Mum she… Read more

She doesn't know what cute means yet… But I do

I know Mr. Million and I are going to think the Peanut is gorgeous. Maybe not straight away, when her head is a funny shape and she’s blotchy and goopy, but very quickly we will be smitten. We will look down at her and see half of me, and half… Read more

She doesn’t know what cute means yet… But I do

I know Mr. Million and I are going to think the Peanut is gorgeous. Maybe not straight away, when her head is a funny shape and she’s blotchy and goopy, but very quickly we will be smitten. We will look down at her and see half of me, and half… Read more

As a non-believer, I think I’ll just thank my obstetrician

Today marked our eighth scan to keep a watchful eye on our Peanut. The scans are spreading out in time now, so it has been three weeks since the last one. This means that for at least ten days between this scan and the last I forgot there was anything… Read more

Happy to be a wallflower this time

As we lined up outside the elevator to take our tour of the hospital it felt like I had never been there before. A month or so earlier I had sat in a chair in an obstetrician’s office and been told our baby might have a heart condition after vomiting… Read more

To test or not to test

The 12 week scan is the first major milestone in a lot of couple’s pregnancies. It marks the end of the first trimester, the end of the risky period for miscarriage, the end (hopefully) of the worst of morning sickness, and the first chance to see your baby on screen,… Read more

Dehydrated but well-brined – anyone got a tissue?

A newly shaven man emerged from the shadows to screams and cheers from a group of beautiful women. “Oh my gawd,” rang out from the women as their hands flew to their mouths in amazement. The man sheepishly twirled to show off his new look. A mirror was brought in… Read more

A card carrying member

Pre pregnancy, I had a certain view of pregnant people, and people with babies.  I went to a couple of baby showers where it felt like the pregnant woman in question was being initiated into some strange foreign club where every member was given all manner of obscure gifts including… Read more

The shopping list descreases

It turns out I wasn’t the only one doing research. At our follow up appointment the doctors were almost as stumped as us. When we found out we had an appointment with a genetics person, my first instinct was that she had a syndrome or disease which was causing the… Read more

What's normal anyway?

There’s a lot they don’t tell you about pregnancy and parenthood. I had no idea bleeding noses and headaches were standard practice. Or that morning sickness would feel like the worst hangover I’ve ever had spread over 7 weeks. They didn’t tell me that I would become an expert in… Read more

What’s normal anyway?

There’s a lot they don’t tell you about pregnancy and parenthood. I had no idea bleeding noses and headaches were standard practice. Or that morning sickness would feel like the worst hangover I’ve ever had spread over 7 weeks. They didn’t tell me that I would become an expert in… Read more