caring

The last three weeks have been difficult. I’ve been to the various hospitals that plan to look after my dad and I’ve cared. I hope and pray it doesn’t happen to me and feel such a swell of relief that it can’t happen to my child through VHL, but I have.

Putting a nappy on your dad and the n going home to pt one on your baby girl pushes irony to its limit. I fed him his soup, I have washed him I have helped him clean his teeth. I have listened to him try and articulate his thoughts and feelings.

My father is a wonderful man and he should have been loving this time of his life. He should have been able to relish his retirement. He gave all he could to his job and I never in all those years felt neglected or that his work came before us, ever. I was a very lucky girl because both my parents worked but I was always of the opinion that we, their children, were the most important people in the world. We still are. I really hope my child feels the same when she is 30 and 15 for that matter.
When are you allowed to let old age take the blame for what happens to you?

VHL is getting all the blame so far.

Well it deserves it.

It ends here

I remember when I was a teenager and first embarking on a serious sexual relationship when I realised (or was reminded by my parents) that getting pregnant was a bad idea, not least because I was a teenager but also because of the 50/50 odds of VHL. ‘It ends here’ I thought. 

My brother, the other member of the family who had it was dead and my dad,well as you know, he had had a vasectomy as soon as they knew it was genetic. I really felt that I was the only one left, the only person with this horrendous and murderous disease. And that was a decision I made. No babies with anyone, until I met my partner and I really wanted a baby.

And now I have one.

Since the moment she was conceived I felt guilty, my own desire and pleasure of a child and I was certain I had given her this disease. I knew, deep down that she had it, told myself she had it, was waiting to hear it officially but knew. 
You know? 
And there we were, dashing from Euston Square to Great Ormond Street all to hear what I knew and what my partner knew and then the Dr said. ‘I have some good news for you.’ And my gut and my instinct and my Catholic guilt evaded me, left me, put up their strong arms and gave in.

She doesn’t have it, she is free.

It ends here.








Unless I get pregnant again of course and then we play fates game all over again.




PS
once when i was in Rome i walked through a gateway that I seem to remember a nun saying that if you went through in a state of grace you got what you prayed for. I was selfish with my prayer but thank God I was.

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.