You are Not Alone

by Elise, Indiana, part of a conversation at the VHL online support group at vhl.inspire.com

I don’t have VHL, but my husband does. I was a rambunctious woman before I met him 5 years ago. I first didn’t know he had it, but always wondered what that scar on the back of his head was. Then he told me.

We were one of those couples who got pretty serious, fast. And then, things were put on hold when he had to have another brain surgery a few months into our relationship. I found it so weird that this young man, who loved me, despite my imperfections, was always smiling, happy go lucky and just genuinely loved everyone around him, had this “VHL.” After his brain surgery, he was still smiling. Two in a half years later, we were married, two weeks after that, he had kidney surgery. Still smiling. Two years after that our daughter was born (December 08’) and now, the day before her 6 month birthday, he will be having another kidney surgery. He’s still smiling, but something in him has changed. He doesn’t think so though.

One thing I know for sure, is that he has always had God. Always leaned on Him in times when he’s alone, always prayed and whole heartedly believed. God gave us free will. And what we do with that is our own choice. We can take the good with the bad. Or we can just wallow in our own self pity.

I look at my daughter everyday and thank God for giving me my husband. Tumors and all! I truly believe that his “condition” has shaped him into the loving husband, brother, son, father and friend that he is today. He doesn’t take life or anyone in it for granted.

Just remember that you’re a beautiful person and have so much to offer this world. Just remember we are all imperfect.

As printed in the VHL Family Forum 18:1, February 2010. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

mystory