CHARGE Syndrome

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