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

By on August 8, 2016

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 in a group home and Read More...


Episode 11: Fiona and Heather – living with Wolf Hirschhorn Syndrome

By on August 1, 2016

I have been reading my next guest’s blog Star in her Eye for so long now, I don’t know when I started. Heather Kirn Lanier’s writing about her journey with her daughter Fiona has been a constant, a source of comfort, beauty and grace throughout my whole journey with Eva. Heather is one of those Read More...

Privacy vs popularity – A response

By on July 6, 2016

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 giving up my privacy I Read More...


Feature in the SOFT UK newsletter

By on June 14, 2016

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 diagnosis to bereavements to pregnancy Read More...


Episode 5: Lydia and Danae – Part 2

By on February 12, 2016

[podcast src=”https://html5-player.libsyn.com/embed/episode/id/4143354/height/360/width/480/theme/standard/autoplay/no/autonext/no/thumbnail/yes/preload/no/no_addthis/no/direction/forward/” height=”360″ width=”480″]In the first part of this episode I introduced Lydia and her mother Danae. We heard about the challenges they have faced not having a diagnosis for Lydia, and how they have come to cope with her relentless seizures. In this part of the episode I explore how it is that Danae Read More...


There's a battle going on

By on January 23, 2016

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, she talks about the debate Read More...


The right decision

By on December 1, 2015

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 was wondering whether to proceed Read More...


She comes from a long line of pirates

By on October 14, 2014

The Peanut has doctors confused on a number of levels. A key disagreement is between Plastics and Opthalmology over her left eye. The Plastics doctors think it’s a hemangioma (a kind of birth mark) and the Opthalmologists think it’s a cyst. Both doctors know what the other thinks, but neither are prepared to concede and Read More...



Ammunition for those who can't, or won't, go along with "breast is best"

By on February 28, 2014

After my little rant about the judgement of pregnant women and new mothers I’ve received a lot of feedback from other mothers who can sympathise. It seems we are all walking around being told how to do things and judged if we don’t follow the orders, while our internal monologues instruct us to smile and Read More...