CHARGE Syndrome

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

Eva’s third birthday

Eva’s third birthday

Eva’s birthday is coming up. April 6th. She would have been three. Every few months I play a thought experiment, and try to imagine both our lives if she was still here. I imagine the big things, her crawling, her hearing sound with cochlear implants, her and I living together… 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

New photos of Eva

New photos of Eva

I have hundreds of photos of Eva. My phone is never far from me and I used it, a lot, to capture her smile, her successes in tummy time, he cry, I captured everything I could. Even with these hundreds, and the dozens of videos I captured too, there is… 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

The hardest thing

The hardest thing

On Thursday a new episode of the podcast will come out. Instead of asking the questions, this time I will be the one telling my story. I asked my talented friend Kelsey Dilts McGregor to help me and step in as the host for this episode. Towards the end of… 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

We are a top resource for Special needs families!

I got a lovely email from Total Pediatric Therapy that The One in a Million Baby has been named in their list of best resources for parents of children with special needs. This just made my day. This is exactly why I’ve kept writing and why I started the podcast. 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

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

No excuses: Imagine it

No excuses: Imagine it

“I can’t imagine what you are going through…” It’s a phrase that every parent who has lost a child has heard multiple times. It’s meant well. The speaker wants to let the griever know that they recognise the magnitude of this loss. They’re trying to validate the griever’s feelings by… Read more

I’m in the Huffington Post!

I am pretty excited. My last blog post on how we talk about disability and special needs is on The Huffington Post Australia! It’s the first piece they have published of mine, and I hope there will be many more. http://www.huffingtonpost.com.au/tessa-prebble/we-need-to-change-the-way-we-talk-about-disability/?utm_hp_ref=blog Read more

Words matter

In the New Zealand media, a city mayor recently came forward admitting he had been wrong. He said he had been dismissive of the needs of Maori. He called himself a recovering racist. He asked for the people of New Zealand to think about their own actions. Andrew Judd did something… 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

Counting backwards

Counting backwards

Holidays seem to make me count backwards. Where was I last year? The year before? I did this before Eva, but now it feels even more pressing. Easter is no different. Last year on Easter I drove to the Hawkes Bay for a holiday with friends. The holiday coincided with… Read more

I have a voice and I will roar

I have a voice and I will roar

There was a feeling that I don’t think I ever felt before Eva was born that I have come to know now. Before Eva was born I felt twitchy, anxious, like I wasn’t doing enough with my life. I always imagined that I would have written a novel by the… Read more

Putting the podcast out there

Putting the podcast out there

Telling my story and Eva’s story hasn’t been easy. At times I have closed my eyes to avoid seeing my fingers hitting “Publish” on certain posts. I worry that I’ve said too much, that I will be judged and condemned for things I’ve done. But even with that worry, I… 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

Eva memories – day 12

Eva memories – day 12

When Eva got out of the hospital after she was born she was six weeks old. Still a wee thing, but those six weeks felt like a life time to me. So much had happened and changed. I thought of her as so much older than she was. I remember… Read more

Memories of Eva day 3

Memories of Eva day 3

I had a fairly relaxed attitude when it came to Eva’s physio work outs. I had a lot of equipment, I mean a lot, where I was supposed to put her into all sort of positions to strengthen her neck and core. I did use them, but not as much… Read more

Anniversaries

Anniversaries

Eva died February 25th 2015. This makes her anniversary, three weeks away. It’s no surprise that anniversaries for events like this are hard for those left behind. Anniversaries, birthdays, Christmas, any event of importance where the marked absence of that person feels carved in neon lights. For me, the hard… Read more

The full force 

The full force 

So many of the mothers I am visiting on this trip have worried about how I will cope being around so many children. They have been concerned, quite realistically, that being around healthy, happy kids will be upsetting to me and remind me of what I have lost.  Truth be… Read more

Meeting the women who held vigil for me

Meeting the women who held vigil for me

It’s Wednesday here in New Zealand. In 10 sleeps I will be getting on a plane at an ungodly early hour of the morning and flying to Minneapolis, Minnesota to stay with the first mama from my facebook mama’s group.  Not long after Eva died, the group, which is a… Read more

Not so fast on my feet

Not so fast on my feet

I wish I were a little quicker on my feet sometimes. When I write these posts I have time to think. Time to create sentences. Time to weigh up words and their meaning and their impact. I can re-write and take all the time I need. But on the spot,… 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

Expectations

When Eva was first diagnosed as blind and deaf, I tortured myself with this image of her crawling across a pitch black room. No light, no sound. Impenetrable. Isolated. I imagined myself losing my sight and hearing and I thought, what could be worse? How will I communicate with her?… 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

The Platinum Fundraiser

The Platinum Fundraiser

I’ve written before about that platitude that special needs parents get told that they will meet “some of the most amazing people” through being their child’s parent. The first time I heard it I rolled my eyes and scoffed. What possible friendship could make this situation alright? I thought. It… Read more

Why are there so many songs about rainbows?

Why are there so many songs about rainbows?

I started my second round of sign language classes today. We started off just about where we left off, talking about our families. There were three people from my earlier classes, but the rest of the class was new to me. And I “talked” about Eva. More than once. The… Read more

I'm in a unique position, and I know it

I'm in a unique position, and I know it

I’m in a unique position as a special needs mother. Eva died in one of the slightly easier stages of her life. I had got past the difficult first months. The time of adjustment and grief. I had accepted my girl for who she was, but as a baby the… 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

This city feels different

This city feels different

I’m in Auckland visiting friends. I used to live here, what feels like a lifetime ago, and I still have quite a few friends who live here. One of these very good friends decided to fly me up to spend some of the school holidays with her and her family.… Read more

Surrounded by voices who understood

I dreamt about Eva last night. In my dream they had brought her back 24 hours after she died. Somehow when they got her back to the hospital they realised it was possible to start her heart again. They’d kept this quiet from me for months and she had been… Read more

Without trying, or having to, or knowing it, she changed me

There are a lot of cliches, euphemisms and platitudes that get thrown around when something inexplicably tragic happens. People don’t know what to say, and they want to placate you with something. They mean well, usually, and they are desperately trying to find something to make it feel better. They also… Read more

This perfect Eva shaped hole

I have written quite a bit about triggers over the last few weeks. Things that set me off. Things that turn a seemingly normal day upside down. Things that leave me reeling. But the truth about grief is those things aren’t necessary. Today just felt hard. Teaching felt hard. Waking… Read more

She had nothing to prove

It’s amazing the little scenarios that shake me up. They are obvious to me, but so benign to others that I sometimes can’t quite figure out how to react in that moment. So I flounder and then fixate on it afterwards. Beating myself up for what I should have said.… 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

A collective railing against the world – a collection of essays

When Eva was born and doctors started to deliver the hard news to me about my daughter, I wanted someone to rail against. I’m not religious, so I couldn’t rail against god. I couldn’t blame the doctors, although it felt very tempting at the time. I got angry when people… Read more

Learning one of New Zealand's three official languages

At 5.35pm tonight I was in my pyjamas, halfway through a Corona beer and just starting yet another episode of Buffy for the day. I was congratulating myself on getting so much done today including going for a run, catching up with an old friend, dropping of a bridesmaid’s dress… Read more

The end of an era

Today marked the end of an era. I moved out of Ess and Jay’s house and into an apartment by myself. I said goodbye to the home and household that has provided immeasureable support to me and Eva over the last year. Ess and Jay are private people. Humble people.… Read more

One month – 180 degrees yet again

Tomorrow marks one month since Eva died. One month since my life changed again. In the last year I have been spun 180 degrees time and time again. Each time I have staggered and then found my bearings. Sometimes it took longer to get back on the path than others.… Read more

Not "for the best". Never "for the best".

I heard a rumour the other day that made my skin crawl and my stomach lurch I heard that someone in passing had mentioned that Eva’s death was perhaps “for the best”. I heard that and my skin went hot and prickled. My fists bawled up. My stomach knotted. I… Read more

Fugee love

There are so many people I need to thank since Eva has died. This past year since Eva was born I have needed help and support more than any time in my life. This hasn’t always been a comfortable position for me. I like to be relatively self sufficient. I… Read more

Grief is its own master

Grief is a strange thing. Each person experiences it differently and moves through it at their own pace. Even within one person it’s not consistent. From event to event my own grief is different and within the same event it differs too. At different times of the day I feel… Read more

Eva spreads awareness

Yesterday an old classmate from journalism school interviewed me about Eva for The Dominion Post newspaper. He got in touch after seeing her death notice in the paper over the weekend and having a look at the blog. He wanted to do a story on the gutsy awesome kid that Eva… Read more

Hindsight is 20/20

Hindsight is 20/20 right? There are so many things I wish I could tell this woman in the weeks after Eva was born. I don’t know if I would have listened, but I would have liked to have tried. Some of these are things people did in fact say to me,… Read more