Grandma was our superwoman. She had three kids, five grandkids, and 5 great grandkids, and she dealt with her ownVHL stuff. And finding out about the ones that had VHL, upset her greatly. She helped me a lot .
She would talk to me when I was depressed, about my kids and worried about their health. She went through a lot of the same stuff I did. She knew the right thing to say.
People say they understand but, VHL comes with a lot of stuff. I cried when I found out my son has VHL. You don't want to see your family go through this.
I have had people tell me to get over it. How can I ? They remove tumors from my brain. Then I'm going to the drs for myself and my son. I understand how my grandma must have felt. I look fine to you. But I have "IT". "IT" hurts, "IT" bothers me, "IT" scares me. And knowing my son has "IT". "IT" gets us in all different ways.