So it has been several years now that Lil came to live with us as she grew dependent on others to care for her after being a radically independent woman most of her life. I was never prouder of my daughters who voted to issue the invitation to her once her ALS started giving her fits and the possibility of a cure was fading. She came to live with us at first with reluctance afraid of what the future might hold, but as we grew together as a family, unsure, unsteady, ready to tip over, we made the choice to put other stuff on hold so we could give her all the care she asked for. Her friends supported her days out, and would as long as she could manage it, pick her up for a dinner, for card games, celebration luncheons.
I spent time watching tennis and dancing with the stars, with her in her room we had emptied so she would have space, and lifted her from place to place when needed.
Our new family was far from harmonious, we disagreed, we were angry, we were exhausted, and often at wit's end. But somehow we held it together, knowing a bit more intimately how precious life is, how we cannot take for granted we will be able to do anything we want anytime we want. I am not sure if I learned enough about the precious gift of health and life, I am still chewing on what I learned, but in the meantime, we walk to support the research, and the ways the chapter supports families. If you would like to help, follow this link,
Participant Center - Walk to Defeat ALS®