CHARGE Syndrome

I see a girl…

I see a girl…

I have this photo on my phone of Eva. I spread the apps out across my phone so that there’s a screen with just one app and I can swipe through the screens until I reach her face, free from apps in the way. It’s the face I see before… Read more

What didn’t happen

What didn’t happen

When Eva died, she had so many big things coming up. She was getting her hips and eye operated on. She was going to get a G-tube placed so she could finally have the tape off her face and the NG tube out of her nose. She was going to… Read more

Episode 10 coming soon!

In May I got prolific with the podcast and put out two in a month. This month, has been less productive. I haven’t managed to record until the weekend just been and I’ve watched the 1st of July sneak closer and closer with no material. I realised something, it’s hard… 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 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 Platinum Fundraiser

The Platinum Fundraiser

I’ve written before about that platitude that special needs parents get told that they will meet “some of the most amazing people” through being their child’s parent. The first time I heard it I rolled my eyes and scoffed. What possible friendship could make this situation alright? I thought. It… Read more

The Peanut is coming home

It’s time to come clean. Get ready for a long read. While people have called me brave and strong and a great mother to the Peanut, I have been keeping something quiet. For the last two months, the Peanut has not been in my care. She has been in the… Read more

How it feels when your life makes other people thankful for their own

Prefix: I wrote this post (including the note at the end) 10 weeks ago when the Peanut was still in the hospital. I don’t feel this way now. This post was about as bad as it got. I was angry. I was looking for someone to blame. And I didn’t… Read more