There's a battle going on

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,… 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

I'm homesick – one week left

I'm homesick – one week left

I’m homesick.  I’ve been missing people since day one. I said a fairly teary goodbye to my boyfriend at the airport in Wellington and almost as soon as I left his side to go through customs I started missing him. Now, that missing has expanded to include him as well… Read more

i fear no fate

i fear no fate

This trip has felt at once exciting and terrifying; exhausting and invigorating.  I have been inspired and anxious, panicky and confident. I have sat for hours in airport terminals and train stations, and slept on planes, trains, air mattresses and couches. I have felt a deep sense of connection with… Read more

Grief is – Emily Rapp and Big Sur

Grief is – Emily Rapp and Big Sur

I’ve been reading Emily Rapp’s book, The Still Point of the Turning World on this trip. I started reading it not long after Eva died but never finished it. I have only finished one book since Eva was born. Wild, by Cheryl Strayed.  Rapp’s book is about her son Ronan… Read more

Ever changing impermanence – or a day at the aquarium

Ever changing impermanence – or a day at the aquarium

Where Eva and I lived together in Wellington, there was a reserve right by us. I would put Eva in the front pack and walk with her down to the reserve. Sometimes I didn’t make it to the bottom where there was a dam, but if I was feeling energetic… Read more

A bit of an indulgence

A bit of an indulgence

I’ve found myself showing the various little kids that I’ve stayed with on this trip videos of Eva. Often they have spotted her photo and pointed at the screen and said, “baby” so I take that as my cue. Or else I’m trying to distract them. Or sometimes I just… Read more

Eyes bigger than my stomach

Eyes bigger than my stomach

When I was a kid my mum used to look at how much food I had on my plate and say, “your eyes are bigger than your stomach”. I would try to argue, but she was usually right. I just wanted to taste it all.  This trip is no different.… Read more