But as the viral reaction became impossible to avoid, I suddenly had an epiphany….a lightbulb moment, if you will! Or, perhaps an "ice bucket" moment to be accurate. Let me explain….
Mom was a beautiful lady. She handled the news with grace and dignity, and a strong, faithful inner peace. But as the days wore on, she also became sad and withdrawn, almost exhibiting a kind of shame over her fate. She shied away from outings as the awkward stares, the confusion when she spoke, the lack of understanding of ALS - all these things left her feeling uncomfortable and alone. Speaking, eating, breathing…normal acts that now made her embarrassed and afraid. She made me promise to keep both friends and relatives away as the disfiguring disease consumed her body. Her pride was gone and her spirit was broken. I tried my best to keep that promise. Turning folks away was hard, but I had agreed, after she promised to attend one last family birthday party and say goodbye in her own way. It was one of the hardest events I've ever attended, but in the end, it was a huge success. Here is my wonderful family, celebrating the birth and life of my Mom.
Just 3 months after this outing, Mom left this earth. Her disfigured face returned to it's beauty as we watched the peace return to her soul. She left as gently as she had lived. For that we are forever grateful! We had great support from the ALS Foundation and Heartsway Hospice, as well as our multitude of friends and family. Sadly, ALS changed my whole family forever and nothing will ever be the same…..
If you'd like to donate to help ALS families cope with this challenging disease, click here.