I believe it is normal for children and teenagers to be self-consumed. They are growing, learning and finding their way in life. When they come home from school, they tell their parents about their day. I don’t recall asking my parents about their day!
When I was younger I didn’t worry much about my parents. They were healthy and seemed invincible. I can tell I am aging as I now worry about my parents. I am concerned about their well-being and genuinely interested in learning as much as I can about their lives. I enjoy hearing stories of when they were younger, how they feel, their thoughts and aspirations. I want them to be happy. I wish I would have listened more and talked less as a youngster.
My mom has shared fond memories with me of when she was a child in Loganville, Pennsylvania. It is where her grandparents lived. I always enjoy going to Loganville with my mom, as I know it is special to her and is now special to us. We visit Brown’s Orchards for a delicious lunch and a stroll through the fun market. We then enjoy old fashioned ice cream at a hidden treasure, Carman’s Ice Cream shop. Every time we visit Loganville, my mom is sure to point out the exact house that her grandparents lived in. I feel closer to my family members whom I never met, when we are in Loganville.
On April 8, 2010, during one of our visits to Loganville, my mom and I made a spontaneous detour. We visited the cemetery where several of our family members who died from PKD are buried. It was chilling, emotional and inspiring to watch my mom walk around our family members’ tombstones. She told me who each person was and how I was related to him or her. It was a life-affirming day.
We know that PKD started with my mom’s grandfather, Kervin, who passed away at age 60. My mom’s grandparents had 10 children and my mom’s mom was one of the several children who inherited PKD. A lot of my mom’s aunts, uncles and cousins had PKD. We paid respect to them at their tombstones on that poignant spring day in Loganville, Pennsylvania.
My mom had one half-brother and one sister who passed away from PKD. PKD took Jack’s life at age 60, who was my mom’s half-brother. My mom’s sister, Donna, also died from PKD at 48. Donna lived in North Carolina and I only spent time with her for one week when I was 15 years old. She was in kidney failure and I remember her sitting on the floor of the spare bedroom in our home with curlers in her hair and medicine in plastic bags surrounding her. At that time I did not know she had made the decision to not go on dialysis and to let herself pass away. That was a treasured visit for me. I respect her decision but will never understand it. I wish she had fought.
My mom’s mom, Pauline aka “Mickey,” battled a lot because of PKD. She fought hard. She passed before I was born. I wish I had the opportunity to meet this warrior. I know she was amazing because she created my mom. My mom’s mom started to have issues in her mid 40’s and expired at age 53. She was on dialysis for eight years and the thought of a transplant scared her. Unfortunately, she never made it to that point. Her cysts kept growing and her abdomen became very enlarged. They removed both of her kidneys. Seven weeks following that intense bilateral nephrectomy, her bowels burst. They performed bowel surgery on her but were not successful. She passed away one month later. Her cause of death was she bled to death due to complications of PKD. Tragic.
My mom, Pam, is 57 and was diagnosed in her early 20’s. She has been on high blood pressure medicine since the age of 30. She has her original kidneys which are functioning well. Mom has not had any cyst bleeds and has only occasional pain. I am so thankful she is doing this well. My brother, Brandon, is 36 years old and has PKD. He has four children and knows that his oldest son, Branson, has PKD. I was diagnosed at age 10 and am the youngest in our family to endure such severe side effects from PKD and am the first in the family to receive a kidney transplant.
This is our family tree of PKD. On that moving day in April 2010 when mom and I stood side-by-side in front of the tombstones of our relatives, there were many unanswered questions. We wanted to know more. Why they passed away. Why so young. I was saddened yet felt very fortunate as I could reach out and feel my mom’s warm embrace. Hear her voice. See her beautiful smile. I am proof that we might not always follow the same family history as our loved ones. I encourage you to be inquisitive, ask questions and learn as much as you can about your family tree of PKD while you still have the opportunity to do so.
What does your family tree of PKD look like?