I’ve never really recognised how similarly dread and excitement present physically. I’ve felt off kilter much of this week. You know that thing when you lie awake at night trying to work out what it is you’re worrying about? I’ve had to conclude that, infact, what is bothering me is excitement. Aside from the MAD Blog award shortlist fun (which I still can’t … Read More
I’ve often talked here about the future, the uncertainty of it and the fear of that unknown. I’ve had cause recently to think about the past. I was completely stunned and delighted this week to find out that this blog has been shortlisted for a MAD Blog Award. One of the things that surprised me was that … Read More
It’s officially spring! We have survived another winter. I know that sounds very melodramatic but back in September with winter stretched out before us like an obstacle course of sleepless nights, infections and potential complications, March seemed like a distant utopian place and yet…here we are. Our tally for this winter was one hospital stay and two serious … Read More
Once we had established which local library was open, my mum in her usual style, had Mojo wrapped up, in her wheelchair and ‘out of my hair’ in minutes. I was left with a golden hour of alone time. My mum has been doing this since Mojo was born. Whether it was giving me time … Read More
Mojo has Microcephaly. I don’t think I’ve ever told you that. Not that it’s a secret of course it’s just that, for us, it has always been secondary to the Holoprosencephaly. Microcephaly sits on her list of clinical diagnoses unmentioned, untreated, it just, is. Simplistically, Microcephaly means having a clinically small head. Look it up and … Read More
Mojo loves stickers, especially those given to her as a reward for working hard or being brave. She displays them proudly right up until the point when her compulsion to chew and bite things takes over and we have to retrieve them from her mouth. We came up with a few ways to save the … Read More
Between Christmas and New Year this year we attended a Service of Thanksgiving for the life of a beautiful little girl called Ally Louise. Ally lived for eight days in December. Ally’s impact on me and many others, is one that will live with me forever. Ally’s parents are good friends of ours. Heidi and … Read More
