On March 19, 2002 our 2nd grandchild Belle Menne was born. From a grandparent’s perspective of a new grandchild entering our lives, Belle was perfect in every way! For 12 months she developed her fun personality, learned how to crawl up and down steps, walked around furniture and explored her new world. Just when she was about to take her unassisted first steps, a subtle shift began to emerge. Her development slowed and her developed abilities (crawling, walking around furniture, sitting up by herself, etc) began to regress. Within a short period of time she was diagnosed with a late-onset form of Krabbe disease, and at 17 months received a stem-cell transplant at the University of Minnesota.
As a grandparent living in Denver (1,000 miles away from my daughter and her husband), my first reaction was “how can I help?”. I initially took a 30-day leave from my teaching job and stayed with their family, providing 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 stem cell transplant and chemo. But each time I returned home to Denver, I felt even more lost and helpless. I was afraid I would lose my granddaughter, whom I loved dearly. Watching from afar as my daughter struggled navigating life as a mother with a child with a rare disease, it made me realize something for me needed to change. Wanting more time with both my daughter and granddaughter, I quit my full-time teaching job, began to substitute teach and flew back to Minnesota to spend 7 days a month in their home. I did this for more than a year, and during these visits I would babysit, cook, clean and just be present for the countless doctor and therapy appointments. I was spending precious time with both my daughter and granddaughter! Although this benefited both their family and my need to be a part of the process, I was still so far away for 3 out of 4 weeks every month that I found my feelings of helplessness and sadness increase. 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 8 year old!
Fast forward 19 years after Krabbe came into our lives. Belle graduated from high school in 2020 and commits daily to live her best life. She loves to read, travel with family, and plans on writing a children’s book. 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. As for me, I retired in the summer of 2021 and currently spend two days a week with Belle where we attend weekly therapy sessions, complete 3-D puzzles together (she’s the brains and I’m her hands), paint, shop, and have deep conversations between a beautiful young lady and her grandmother.
I know my journey with Krabbe may be different than your story as a grandparent, but I strongly believe we may 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 1000 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 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”.