more of his eye

Because of my mum I think, I haven't tried to connect with many other VHLers. Some people find it useful to find connection on the misery of the disease and I suppose hope to find hope too.

Then tonight I noticed him watching a film with one eye shut. Makes it easier to watch when one eye doesn't do what the other one does. The same, the two of us. Not a big thing, not a big deal. But still a commonality. 

I know it meant more to me than him. Because I saw a thing I do because of VHL and he's doing a similar thing because he's got a thing. 

2 years ago

I went in for kidney surgery - my second, my first with a robot. 

I thought things would be looking up after that. And yet no, 2 strange and unsteady years. I'm hoping that it's now a time for good things. 

VHL - leave me alone for a bit please. 

What's silly

What's silly about Christmas is the sense of occasion. The pressure for it to matter. The day. The tradition and the food. And, when you expu it the polite acceptance of it all. 

Today the joy of singing and silly was just marvelous

 

judged

Ummmm

Feeling safe in your own home 

Judged 

Finding space 

I think that's what family should feel like, not judged, just loved. 

Ummmmmm