Jill and Eric visited last week and we were talking about faith and I, with a strong conviction, said that I felt I possessed a “childlike faith.” Maybe I was a little too confident or even cocky because exactly one week later I had a meltdown and felt as if I wasn’t faithful at all. I was so confused and hopeless as to why I have to go through this hell.
Maybe I felt that way because those ugly words like feeding tube and motorized wheelchair and breathing machine kept popping up. Maybe it was an emotional week because of a six-hour ALS clinic day or because J.D. from Mary Free Bed spent two hours in our living room explaining different wheelchair options. I felt like Mark and I were shopping for a new car that I hated and that we really couldn’t afford but we were buying it anyway.
Maybe I had a shitty day because I can no longer pick up my phone to call my kids or my sisters or brothers or nieces and nephews or my friends because my hands are no longer coordinated enough to maneuver a phone. Or maybe it’s because my words are getting harder to understand. I’m not sure why, but I lost hope on Friday.
But Saturday was a brand new day and I was emotionally ready to begin it much happier. My high school friends Jill, Nancy and Kristine visited and I didn’t want to waste a single moment being in the dark.
Next time I feel like that I hope I can remember the amazing love and care I am gifted with every day and the beautiful family and friends I have willing and ready to help when I need them.
And I hope I can appreciate a warm, clean, uncluttered home and family and friends who fill it with love.
And finally I hope I can remember to be grateful for my medical team that helps and guides us through this devastating journey and for our medical insurance that allows us to afford the assistive devices we need to make life easier for us.
Today I am hopeful and my “childlike faith” is back where it belongs.