On March 19, 2002 our 2nd grandchild Belle Menne was born perfect in every way! For 12 months she developed her fun personality and just when she was about to take her first steps, a subtle shift began to emerge. She began to regress, and within a short period of time she was diagnosed with a late-onset form of Krabbe disease. At 17 months Belle received a stem-cell transplant at the University of Minnesota.
I remember where I was – sitting in a Master’s class a thousand miles away – when my daughter called and told me, “Mom, it’s Krabbe disease, not a tumor on her spine like we were hoping for”. I walked outside the classroom, sat on the floor and sobbed uncontrollably. My daughter Carrie and her husband Eric were given this diagnosis from the neurologist for their precious Belle, age 15 months, and told to go home and make memories. He explained her life would be very short and outlined in detail what her last days would look like. Our entire family was in crisis.
In the following days I was in shock and felt numb. Apparently, hysteria, anger, guilt, denial and bargaining are all normal reactions and nature’s way of allowing us to regroup after a heart-wrenching situation, and allows us to develop some coping mechanisms. I reached out to friends for support. I called a friend who is a Pediatric Pathologist and begged him to give us hope. In my mind Belle was just too beautiful and perfect for this to be happening. As a teacher of adolescents in a treatment program, I had to work. After crying days on end, barely able to function, I finally contacted my doctor and received a prescription to calm me a bit. I share these private details with all who are reading this so you know the feelings you have are normal and you are NOT alone! I felt so all alone crying in my husbands’ arms each night, unable to find support or answers. If only KrabbeConnect and it’s beautiful support people were there back in 2003.
After a few weeks, hope came through as the U of MN offered Belle a stem-cell transplant. Living 1,000 miles away I took a 30-day leave from my teaching job to provide 24-hour care for my 5-year-old grandson as he started Kindergarten. This allowed Mom and Dad to spend their days at the hospital with Belle as she completed her chemotherapy and stem cell transplant. But each time I returned home to Denver, I felt even more sad and helpless. When Belle was 3, my husband and I moved to Minnesota and bought a home one block away from the family! By this time, Belle was blessed with a baby sister and their lives were even more hectic with a baby, a 3 year-old and an 8 year old!
Fast forward 20 years after Krabbe came into our lives. Belle graduated from high school in 2020 and commits daily to live her best life. In March of 2023 she turned 21 and had her first “chocolate martini”. She loves to read, travels with family, and is working with Vocational Rehab to find employment a couple afternoons a week. Even though she’s in a wheelchair and has severe physical limitations, she chooses to have a positive outlook on her disease and her future. I retired in 2021 and spend every Thursday now with Belle. We attend therapy sessions and go to lunch. We work on 3-D puzzles together (she’s the brains and I’m her fingers), paint, shop, and have deep conversations between a beautiful young lady and her grandmother. This also allows my daughter time for herself to get her hair done or just relax and breathe a bit.
I know my journey with Krabbe may be different than yours but I believe we share similar feelings of helplessness and fear, as well as optimism and joy with our Krabbe grandchild. We want to support our children and grandchildren during possibly the most difficult period in their lives. In supporting both the parent and child, we are supporting our health and emotional well-being as well. Living both 1,000 miles away and one block away, I can offer some ideas and suggestions to other grandparents – some time-tested ideas and thoughts that helped us greatly through this continued journey of uncertainty. I’ve learned life can provide both grief and joy in the same day. I’ve learned that love has no boundaries regardless of abilities. I’ve learned that knowledge and facts can release feelings of fear. I’ve learned that love from family and friends can bring us through our darkest days. I’ve also learned that being a grandparent has been the greatest joy of my life. My role as a grandparent and mother have evolved and for this I am thankful. I’m forever grateful for my daughter, who at times had to offer me support and provide me with direction.
If there are any grandparents out there that need someone to talk to, I’d love to listen to your story and support you no matter where you’re at in your Krabbe journey. “Sometimes the best way to carry a heavy burden is to share it with another”.