A Tribute to my Mom

My mom, Amelia A., died in October at the age of 81. But this is not about her death, it is about her life. She was a woman who became an inspiration to many people. She never backed down from the challenges of life. I always told her that if she could bottle her inner strength and sell it, she would be a millionaire.

She rarely spoke of her childhood. She was the youngest of eight children. Her mother died in her late 30’s in 1929 when Amelia was 7 years old. Growing up in the Depression in a troop of eight children was not easy, but she never wanted to talk about the bad times.

Amelia married my father Vincent and had three daughters. We never had a lot of money, but my sisters and I always felt secure in my parents’ home. As time went on, it became apparent that there was some health issue that ran in my mother’s extended family. Two of her brothers died young, and then in less than two years my mother lost both her sisters. During this time my father also passed away. She was devastated. Her support system was gone. Her brothers were busy with their own families. She was lonely and unable to understand what was happening. But she relied on God and her daughters to get her through those very trying times.

As often happens, in times of stress, there is illness. Mother had a mastoid infection which required surgery. She had her share of various illnesses, some of which were likely VHL but many of which were not. Nonetheless, she had 70 years of relatively good health with surgeries every few years. She never gave up. She was sometimes angry with herself that she would not do as much as she used to, but she drew on her inner strength and carried on. She had a little wink, and made us feel that she still had the strength and courage to overcome anything in life.

In 1994 I was diagnosed with a small kidney cancer tumor in one kidney. The doctor recommended removing the kidney, and within three days it was done. She was always on the phone with me, encouraging and praying for me. Mom knew how to yell at me and get me mad so I wouldn’t feel sorry for myself. Her strategy worked – you can’t feel sorry for yourself if you’re angry about something else. My sister and I learned through her example not to worry about ourselves because there are so many other people with medical problems. Who are we to complain?

A year later the same doctor removed my mother’s only kidney for the same reason. This time, seeing the toll dialysis was taking on my mother, I resisted his suggestion to remove my second kidney. I did some research on the internet, and contacted the VHL Family Alliance. I went to a geneticist with my family history, and had a DNA test to confirm a diagnosis of VHL. The pieces of the puzzle began to fall into place. Many of the health challenges of nearly 20 people in three generations of our family were finally identified as VHL. One of Mom’s brothers with VHL lived to be 84.

When I first got that diagnosis, I thought other members of my family would be thrilled to finally have the name of the enemy – and the keys to managing our health. But still many people didn’t want to know, declined to go for DNA testing, or avoided checking on very real symptoms which to me were clearly VHL. Some had the attitude, “If I die, I die.” But having seen the devastating effects of untreated VHL in our family, I realized that the outcome was more likely a life-changing disability that would affect not just the person in denial but also the entire family. Dialysis, digestive problems, blindness, paralysis are all possibilities with VHL. But the earlier you find issues and get appropriate treatment, the less likely that a disability will occur. You learn to live with it and manage it and appreciate every day, and “don’t sweat the small stuff.”

When her grandchildren were affected with VHL, Mom always took time to encourage them and give them hope. She knew they were worried, and she would say, “What’s the matter? I have VHL too, and look how old I am!” She attended their football games, and ate lunch with her granddaughter watching “The Price is Right.” Of course she worried and prayed constantly for them too.

Mother and grandmother, we will all treasure her and she will continue to inspire us for the rest of our lives. She has helped to mold the people we are today, and her spirit will always live on in the hearts and minds of generations to come.