Eva’s third birthday

Eva’s third birthday

Eva’s birthday is coming up. April 6th. She would have been three. Every few months I play a thought experiment, and try to imagine both our lives if she was still here. I imagine the big things, her crawling, her hearing sound with cochlear implants, her and I living together… Read more

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