Twelve years ago today, my mom passed away. We knew the end was near, but death is so final. She was so fragile that even the slightest movement of her body caused excruciating pain. I remember sitting next to her on the bed and wanting to help her get cleaned up. As I lifted her arm, she screamed out in pain. She could not speak. I knew she would not want to be soiled, but there we were. I sat quietly with tears running down my face trying not to sob and shake the bed, causing her more pain. In my mind, I knew she could not endure this pain and suffering much longer, but selfishly I was not ready for her to leave. She had so much life to live, so many places to go to and so many more people to meet, including her granddaughters. There are times in life when you need to be sad. How do you make sense of a senseless illness? There was not a cure, no good answers, but we persevered in the hope that someday we would find a solution to bring back her quality of life.

It was not to be as we all sat by her side as she took in her last breath. The night was clear and cold. The moon was shining so big and bright it appeared within reach. I breathed in the cold night air in hopes it would clear my thoughts. It felt unreal like I was going to wake up tomorrow, and everything would be back to normal. Then reality set in and I knew it was forever.

My Gram, her mom, was still living at the time. My brothers drove to her home immediately. It was like seeing the military police at your door. She knew before any words were spoken, and fell into their arms. There was no consoling, no meaning to such a senseless loss. My Gram would always say, “It is just not natural to lose a child.” As a parent, you never expect to lose your child. The photo I shared was one of my mom when she was almost five years old. I can’t imagine that her parents ever thought this happy child would be so ill.

Today and every day, I honor my mom by sharing her story of chronic illness, grit, and determination. Her love of family and life was such a gift. If I can, in any way, prevent other families from having to endure the same struggles, it would be my honor.