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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

Disability as a unique demonstration of diversity – not misery

A woman kills her 20 year old daughter and the public’s response is to call it a mercy killing. Donella Knox murdered her 20 year old daughter Ruby, who had severe Autism spectrum disorder and intellectual disability. The Herald reported that Ruby had a number of associated conditions in addition… 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

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

Invisibilia: The problem with the solution

Invisibilia is one of those podcasts which never fails to impress me. Every episode is beautiful, crafted, intelligent and interesting. Every episode leaves you thinking about some aspect of the world in a new way. This episode was no exception. In fact, it may be my favourite episode from either season.… Read more

Eva’s things

Eva’s things

I did some clearing today. The day after Eva died, we put all her clothes in bags and cleared her room out so it could be used for her when she came back from the funeral home. Mercifully, I didn’t have to do this task at the time. Ess and… 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

Learning how to grieve

I’ve been thinking a lot about what grief looks like for different people. I’ve been thinking about when you see death on the news in foreign countries and the people, mothers, fathers, sisters, cry with their whole bodies. They throw themselves on the ground and wail and scream. Their grief… Read more

Thank you and I miss you and I love you

I’m scattering Eva’s ashes this weekend. I’ve arranged for flower petals to scatter with her and I’ve asked the people who will be there to say a few words for Eva. Eva’s foster parents will be there. My parents. My sister and her partner, Eva’s aunty and uncle, will also… 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

My next guest – Rachel Callander

My next guest – Rachel Callander

Earlier tonight I was angry about the way a mother was having to get signatures on a petition in order to get her special needs child a heart transplant. I was railing against a belief in society that someone with developmental delays is someone deemed less worthy than “normal” people.… Read more

Sign the petition – give Lily a new heart

Sign the petition – give Lily a new heart

I was listening to some people talk about language the other day. They were discussing racial slurs and slurs aimed at the special needs community. They seemed to agree that racial slurs were not ok under any circumstances, but when it came to special needs slurs (we all know which… Read more

For my friend

A good friend lost her dad to cancer recently. She was 25. Too young to lose your dad. Of course there’s no age that makes that kind of epic loss ok, but at 25 you’re just really finding your feet as an adult. You need those people in your life.… 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

Better late than never – the next episode is almost here

The next episode of the podcast is almost here. My goal of releasing each month on the first of the month sort of flew out the window when I spent seven weeks in the USA and got back right before the February issue was due to be published. I’m crawling… 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

The first anniversary

The first anniversary

365 days have been and gone. Today is the 25th February 2016 and a year ago I held my little girl in my arms alive for the last time. The build up to this day has been really hard. I have not known how to feel or behave. I haven’t… Read more

Eva memories – day 14

Eva memories – day 14

It’s the 24th of February. A year ago today, I had no idea that I had just over 24 hours left with my daughter. I put her to bed and went to bed myself. I woke up around 9.30pm to the sound of her coughing through the monitor and padded… Read more

Eva memories – day 13

Eva memories – day 13

Child birth often comes with so many expectations. It’s why we write a birthing plan. I had so few expectations. I was having Eva in a hospital, with a midwife. Before I knew I was going to be induced I assumed I would play it by ear. I wanted all… 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

Eva memories – day 11

Eva memories – day 11

Eva was due to have her hips operated on not long after she died. At three months old they realised she had hip dysplasia. I could have laughed I was so angry when the paediatrician told me that. “She’s had her hips checked before,” I told him. “She is seen… Read more

Eva memories – day 10

Eva memories – day 10

When Eva came home from hospital at six weeks old she took no time at all to realise if she fussed enough, I would hold her in my arms all day long. She liked to be held. That was an understatement. Jay and Ess referred to her as my little… Read more

They don't tell you

They don't tell you

Anyone who has lost someone knows that the anniversary is a hard day. We are told to expect it to be difficult. We know the lead up will be tough. We know all this, but it still feels like a shock. It’s like for months I could see the stones… Read more

Eva memory – day 9

Eva memory – day 9

Eva’s first laugh was so amazing. I had seen her smiles. They were fleeting and if you blinked you missed them. But then one day I caught it on camera. I had proof. And she didn’t just smile, she grinned. She didn’t just grin, she giggled. It’s amazing how that… Read more

Eva memory – day 8

Eva memory – day 8

I got really good at driving one handed when Eva was alive. Most of the time she liked the car, but when she was a bit clogged up or sick she got pretty upset. I eventually got a mirror so I could see her, because the sound of her crying… Read more

Eva memories – day 7

Eva memories – day 7

This memory feels a bit general, but it’s inspired by a message I got from my good friend Ess, Eva’s honorary aunty that we lived with together. She had listened to the latest podcast and she sent me the loveliest comment. She said “I can remember you saying to me… Read more

Eva memory – day 6

Eva memory – day 6

Eva and I had one summer together. It was fantastic. Eva was so healthy and making such huge strides in her development. I was confident and calm and really thought I could do it. During that summer we drove up to the Taranaki for a friend’s wedding. I stayed with… Read more

Eva memory – day 5

Eva memory – day 5

I missed yesterday’s memory. I was so busy editing the next podcast that I forgot. It got to be 9pm and my brain was tired. I looked at Eva’s photos and said sorry, I’ll make it up tomorrow. Today’s memory is about realising that communication with Eva wasn’t something I… Read more

Eva memory day 4

Eva memory day 4

When I first took Eva back into my care she got sick. Really sick. The night before I was to pick her up from her foster parents’ house, I got a call at 1am saying she was in the ER having trouble breathing. I remember asking, “seriously?” To which her… 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

Memories of Eva Day 2

Memories of Eva Day 2

In lots of ways, Eva was a lucky girl. She didn’t have any siblings of her own, but it seemed she was always surrounded by friends. As I’ve mentioned before we lived with my very good friends Ess and Jay and their son Em. Em was only four months older… 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

Almost a year now

Almost a year now

I’ve been back in the country for a little over a week. In that time I took two days to do nothing. Absolutely nothing. I watched TV. I went for a run/walk. I slept. A lot. I cooked for myself. I tried not to think about the impending school year… Read more

Almost a year now

Almost a year now

I’ve been back in the country for a little over a week. In that time I took two days to do nothing. Absolutely nothing. I watched TV. I went for a run/walk. I slept. A lot. I cooked for myself. I tried not to think about the impending school year… Read more

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

My flame burns the brightest 

My flame burns the brightest 

I have shared so much about my life with Eva, my readers, and anyone else, could understandably think I don’t value privacy at all. I share Eva with the world, so you could assume I don’t feel protective of her memory. It’s something I have thought a lot about as… Read more

A New Year, moving forward not moving on

A New Year, moving forward not moving on

The end of 2015 is approaching.  I feel conflicted about how to view it and moving forward. I’m sure some people would think I would want to put the last two years behind me. 2014 and 2015 have without a doubt been the hardest years of my life. I have… 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

I won't sit in the waiting place

I won't sit in the waiting place

When you lose someone you love, there are some dates and days that are harder than others. Anniversaries, birthdays, family gatherings, Christmas. They all take on a different meaning. We remember the Christmases we got to enjoy with the people we have lost, and we know that we won’t have… Read more

The City that never sleeps

The City that never sleeps

They say NYC is the city that never sleeps. I don’t know that I’ve been making the most of that aspect of the city, but it did make me think of other things. This city is so big. There are so many people in a relatively small area. Buildings loom… Read more

Friendship in motherhood

Friendships have always been hugely important to me. As a child and teenager they were what made my world go round. In the days before I developed a phobia of phone conversations I would spend hours with my ear against a headset, reliving the whole day’s events with a friend. … Read more

Sweet pea

Sweet pea

I have managed to avoid tears on this trip so far. It’s not that I don’t want to cry, but I have just not felt like crying. But then a friend I was visiting in Salem gave me this. And suddenly, I was crying.    My friend had given her… Read more