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.
I'm so sorry about what your family is going through. I wanted to thank you for the encouraging comment you sent me two years ago:
ReplyDeletehttp://finity8.livejournal.com/644.html
What's crazy is that somehow it did not show that I ever received that comment until now, but at the same time I wasn't looking for comments from that long ago. My second uncle did pass away from VHL about a year after my first uncle's passing. My mom got the genetic test and found out that she does not have the gene, so she's safe from VHL as well as my sister and I. Everyone else in the family is holding on. My grandmother is currently dealing with Alzheimer's as well and I hope that whatever your dad goes through that he isn't in pain and knows that you are there for him.
I hope that things work out well that the testing works in your favor and your child and congratulations on your new child. My prayers and thoughts are with you.
--Finity8