gratitude

My daughter was in a mood yesterday, understandable but irritating all the same. I'm pleased to know that the fog of my pain isn't effecting her too much but will I ever really know how much? 

My day ended with her snuggled into my arms and me kissing her forehead as I hid my fear and tears. She clung on and then went to bed. I read my book to forget and then slept. 

Each day a gift and right now, a small torment. Tiny really. I count my blessings and try not to worry about the possibility of a future where I'm not able to be me. 

This disease doesn't let up. Over and over again, the next step towards the next step of an unknown future. I could be totally fine or really not and I could be an almost infinite range of things in-between. 

It's that, I think, that's hardest - perhaps if I was certain I'd lose the use of my arms or know I wouldn't be able to speak then I could prepare. 

But for now I'm just going to have to keep pretending I'm fine. 

Talking to my mum

 I didn't know how to say all the things, for fear of it all feeling too sad, but I got to say some of the things. 

The things I did say: 

Asher is allowed to get physical comfort from someone else - I don't want to know her (or him I suppose) 

I'm afraid of being like my dad - I need to remember to say hello first

I want Ayla to still be able to go to Japan

The ones left to say:

If... 

Crisis

Reclaiming my VHL status and making something of it I decided, many years ago, that my derby name would be cortisol crisis. 

Yesterday while not quite getting the skill of a very tight u shaped turn one of my coaches stuff. Crisis try getting lower but not leaning forward so much. My smile honest and joyful. I'm not a natural athlete - never was. I can blame the surgery for it never seeming to get better but in this sport I'm just new again and building skills. 

How cruel then that once more I'm going to be interrupted. How happy then that today I am determined that I'll get back on my skates post surgery. That will mean I suspect I'll be the only (very ameture) roller derbiest that has come back post kidney, brain and spine surgery.