Blog

Podcast transcriptions coming!

It’s been a long time coming, too long in fact, but very soon I will be getting transcriptions for the podcast. It’s something I’ve always meant to do but with working full time and podcasting on the side I haven’t had a lot of extra time to sit down and… Read more

Rare Disease Day

Today I met with someone from The New Zealand Organisation for Rare Disorders, NZORD, to talk about Rare Disease Day in February next year. Rare Disease Day is an annual day at the end of February that is celebrated internationally. NZORD is a space for patients, family, friends, clinicians and researchers… Read more

A new milestone – 20,000 downloads!!

A new milestone – 20,000 downloads!!

In August this year, 11 months after I started the podcast I announced I had reached a big milestone, I had reached 10,000 downloads. I launched the podcast in September 2015 and 11 months later I felt like I had hit something momentous (for me, not for most podcasts.) Today,… 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

In which I get a bit political

I live in NZ, roughly 8,700 miles from Washington DC. So I have refrained from saying much about the recent election. I don’t want voice my opinion and have it feel to Americans as if I am judging them, or speaking out of turn. This isn’t my President and I… Read more

Dreaming of Eva

Dreaming of Eva

All my life I have had an active sleeping life. I’m a sleep talker. Former sleep walker. I do it nightly, sometimes multiple times a night. As a kid, and well into my teens, I walked in my sleep. When I was 15 my Dad built me a mezzanine floor… Read more

New investments in the podcast

New investments in the podcast

Last week I received my AMP Scholarship in my bank account. I suddenly had money to spend on the podcast. I did a lot of research when I first started the podcast. I bought some things cheap and other things quality. I have a tendency to start new hobbies and buy… 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

Delivering good news – it feels good!

Delivering good news – it feels good!

There’s something odd that happens to you when tragedy strikes. You realise you need to disseminate the information to your family and friends. You know they need to know, and they would want to know, but part of you can’t bear to tell them because you know it brings them… Read more

A new episode out soon!

A new episode out soon!

  I have just spent the first weekend of my school holidays working on the next podcast episode. Episode 14 is due out on October 1st and will feature the very lovely Ashley Jones talking about her gorgeous daughter Victoria. I can’t wait to share this one. Ashley is one… Read more