Special Needs

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

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

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

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 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 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

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

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

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

The podcast – how you can listen in

The podcast – how you can listen in

If you are new to this blog, or just new to podcasts, I thought I’d just take a moment to introduce you to this side of my site. In October I launched The One in a Million Baby podcast. My plan was to create a resource for new parents who… Read more

The right decision

The right decision

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… Read more

Meeting the women who held vigil for me

Meeting the women who held vigil for me

It’s Wednesday here in New Zealand. In 10 sleeps I will be getting on a plane at an ungodly early hour of the morning and flying to Minneapolis, Minnesota to stay with the first mama from my facebook mama’s group.  Not long after Eva died, the group, which is a… Read more

That old chestnut 

I was reading a special needs mothers’ facebook page today and had to catch my breath for a minute. There was a comment on there  in reaction to a blog post that I felt so strongly about. It wasn’t ableist, or offensive. It didn’t use language that offends in the… Read more

Episode 03: The call is recorded – what an honour

Episode 03: The call is recorded – what an honour

This morning I talked with Natalie Roberts about her journey with her daughter Chiara and her husband Mauro and their older daughter, Grace. I have followed Natalie’s blog Chiara’s Journey. You can read more about them through their facebook page as well.  Chiara’s journey started as a simple treatment for… Read more

No right way to grieve

No right way to grieve

Grief does funny things to almost every other emotion. It heightens some. Happiness feels bigger, brighter. Beautiful sights seem to radiate that beauty instead of merely being. Your favourite song warms you from the inside out. Rain on the roof makes you close your eyes in enjoyment. Sadness is deeper,… Read more

I thought I was the only one

Today I got this message from a woman in a special needs group: “Just listened. This podcast shook me to my core and brought me right back to 9 years ago. Please send a message to Cassie, thanking her for her honesty. Everything she said I felt, I thought I… Read more

Not so fast on my feet

Not so fast on my feet

I wish I were a little quicker on my feet sometimes. When I write these posts I have time to think. Time to create sentences. Time to weigh up words and their meaning and their impact. I can re-write and take all the time I need. But on the spot,… Read more

The new episode is almost here!

The new episode is almost here!

As of five minutes ago, Episode 02 of the podcast is ready for release. I am just bursting with pride about this episode, just as I was with the first one. I don’t think I have ever felt as proud of anything as I do of these last two episodes.… Read more

Expectations

When Eva was first diagnosed as blind and deaf, I tortured myself with this image of her crawling across a pitch black room. No light, no sound. Impenetrable. Isolated. I imagined myself losing my sight and hearing and I thought, what could be worse? How will I communicate with her?… Read more