So ugly

It has been a while and VHL has grown so ugly.

My father has been in and out of hospital and each time it is worse and more horrid. No one seems to know anymore he's drifting backwards. It is strange to watch my daughter now 10months growing in confidence and ability, learning to feed herself, pick up the tiniest objects and soon she looks like she'll walk unaided.
And my father, my dad is loosing all of these natural gifts. He can't hold a pen, phone, comb, toothbrush... you get the idea. And as my little one continues to babble on and experiment with sound he becomes slower and harder to understand and the cruel cruel truth that his brain, the thinking him part is still as able as it ever was. I know he was terrified of getting Alzheimer’s as his dad did before him but this is so much worse.

I hate it. And the guilt and the worry, will that be me in 20 years will that be my daughter. We find out the test results soon, we’ll know the 50/50, we’ll know the horrible or wonderful truth. And yet more guilt, that I can’t stand going in to see him. Once I’m there I’m so pleased but the effort the drain the walk the tube the everything.

But I love him so much and it is the very least I can do.