My parents came this weekend, it was great to see them. Each time my dad seems more wobbly. The radiotherapy took its toll and there isn't anything anyone can do. We talked about him getting a cane. My sister gets sad, she lives about 10mins from them and she gets to spend a lot more time with them. She said it makes her so sad when she is out with him and strangers assume he is drunk because of the way he weaves around.
As a family we laugh a bit at it now, dad does, making 'oops' and 'whoa, ooh' sounds when he's toppling towards the wall, door, floor, dog, grandchild...
At a New Years meal my mum screamed his name as he stumbled backwards from his chair.
'That'll help' I laughed as I saw my mum realise how angry she was getting at him for something he has no control over. It must be so much harder for her. I know they talk about when he may end up in a wheelchair and how the house would have to change. I don't want to think about that.
I'm not married but I want to be and my partner and I will one day but it occurred to me that I want my dad to walk me down the aisle, not me drag him down trying to avoid small children that he may go splat on. But then these are the moments that make the day, the funny stories you remember. I just pray that please god by the time we get round to it he is still with us. I'm so grateful that if all goes well he will meet his grandchild.
I reckon he's got a good 15 years in him yet. I hope and pray I'm right.
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2 comments:
Thanks for the blog comments. I will bookmark your blog. All the best with the baby!
Russ
Poor dad...it really breaks my heart, what this disease does to people. And yet, you are right. Life is so much more than a wobbly step!
No surgery until wobbly steps here because (as it was explained to me) with VHL there will be a multitude of brain tumors. Four surgeries are the max without debilitating effects. So we try to save surgeries for when th tumors are symptomatic (I guess at that point it unavoidable.)However, that was explained to me before the cyst was there. (Just the 1 cm tumor...and a few other smaller ones at that point.) All of this information (about needing to be more symptomatic)was given to us at the NIH. We're seeing our dr here in Tampa soon to discuss these issues with him.
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