Tags » CHARGE Syndrome

Avoiding the flatline

I wrote a few weeks back about meeting the couple at sign language class with the deaf eight month old daughter.

A couple of weeks ago they told me there was a high probability their gorgeous girl was also blind, or at least had visual impairment. 964 more words

Special Needs

Medical March Madness! 

I feel like we all have Doctors appointments bunched up. March madness? Maybe! Do you have family members doctors appointments all stack up same time of year? 748 more words

Kodiak My Little Grizzly

A collective railing against the world - a collection of essays

When Eva was born and doctors started to deliver the hard news to me about my daughter, I wanted someone to rail against. I’m not religious, so I couldn’t rail against god. 1,141 more words

Special Needs

Learning one of New Zealand's three official languages

At 5.35pm tonight I was in my pyjamas, halfway through a Corona beer and just starting yet another episode of Buffy for the day. I was congratulating myself on getting so much done today including going for a run, catching up with an old friend, dropping of a bridesmaid’s dress for refitting for a wedding next month, getting keys cut for the apartment. 648 more words

Special Needs

The end of an era

Today marked the end of an era.

I moved out of Ess and Jay’s house and into an apartment by myself.

I said goodbye to the home and household that has provided immeasureable support to me and Eva over the last year. 867 more words

Special Needs

One month - 180 degrees yet again

Tomorrow marks one month since Eva died.

One month since my life changed again. In the last year I have been spun 180 degrees time and time again. 234 more words

Special Needs

Not "for the best". Never "for the best".

I heard a rumour the other day that made my skin crawl and my stomach lurch

I heard that someone in passing had mentioned that Eva’s death was perhaps “for the best”. 909 more words

Special Needs