This is a blog about VHL, My Mom and Me...and the rest of our family who have VHL. We are sharing our stories our experiences and hopefully you will laugh and sometimes cry with us too.
Wednesday, December 28, 2016
END OF THE YEAR, DONATE IF YOU CAN
END OF THE YEAR....donate if you can.
It was July 1962. She was almost 25 years old, 5'2" and barely 100
lbs. She had auburn hair and green eyes, she was kind, generous,
creative, smart and fearless and beautiful. She never complained about
the hand she was dealt. She was our mom.
She woke up one morning without the vision in one eye. I was 5
years old. I understood what BLIND meant but everything else was lost
on my level of understanding.
My dad tried to explain what was happening in our home and how our
lives would change. But someone forgot to tell my mom...because on that
same morning, mom said, "jump in the car, I'm driving you to school."
did jump into the car. I was standing on the floorboards in the back
seat, straddling the hump of a 1940 something Buick, holding onto the
front seat, just behind my mother's right shoulder. As we pulled out of
the driveway, I'm waiting for someone to remind my mother that she
couldn't see. We drove up to the stop sign, we both looked both ways,
and BOOM! She drove over the curb. I thought we were going to die. I
remember this being very traumatic for me. I refused to ever get into
the car with her again.
mom would learn braille, walk with a white cane and cook. She got a
Guide Dog named Enid. She took classes at the local college and rode
the bus everywhere...she was so brave, she was amazing. She was our
My entire family has been affected by this dreadful disease including my kids and grandkids, as well as many of my cousins.
My family wasn't much different than other families in the 1960's. Except my mom was blind and she had this thing called VHL.
We'd never heard of VHL before. No one in our family had it. Looking back over my family tree, I can see the signs.
VHL Alliance has always been there to help us navigate our way through
the maze of diagnosis. They not only help fund cancer research, they
provide patients with information and resources. A lot of us have to
advocate for ourselves and family members. We must educate our health
care providers...The VHL Alliance gives us tools to help.
I was just a daughter
grieving for her mother and wanting to leave her a legacy. Now I am a
VHL Warrior, working hard to support VHLA in finding a cure. That is why
I am proud to fundraise and give to VHLA. Would you please join me?