Amidst the shock and horror of discovering that our family was trapped in a web of labels and uncertainties, one thought continued to race through my mind — “her voice” …
As the thought pulsed through me, I reached for every crevice, every dark hidden corner to find it. I was longing for one crumb — one memory to come rushing over me — a whisper … anything to put me at ease. The faster I searched, the more suffocated I felt. It was a great fear of mine that I would never hear the sound of her voice again. And, worse — that I would forget what it sounded like.
Fast forward two years and it has slowly happened. The remnants of my mother’s sweet, calming, familiar voice have drifted away. The inflection — the soft soothing sound and the incessant questions — no longer exist in my mind. Those corners and crevices have been scrubbed clean, and the last little droplets have dried into distant vapors. It has happened a lot faster than I expected.
I don’t think I realized the weight I was carrying or the progression of losing the sound of her voice until this past clinic appointment. We arrived as we always do, greeted with kindness and enthusiasm to catch up on our lives. Our first visit was with our local MDA representative. She smiled as she pulled out an iPad, a recent donation to the clinic. Already familiar with the device and its capabilities, I began to write notes and questions for the rest of the clinic staff.
I was turned slightly away, giving my mom space to visit with the rep, when I heard her speak. A simple yet timeless phrase — “Hi, how are you?” Surprised, I looked up to find that it was not my mom who had spoken but the “Speak it!” app on the iPad that had voiced those words.
I realized in that moment, that device — that automated female voice — had replaced every memory I had of my mother’s voice. My spirit was crushed. My eyes intensely filled with tears, and my chest began to cave in as I swallowed the existence of this new reality.
It’s in these moments that you are reminded of the gravity of this disease. You come face-to-face with the giant standing in front of you beckoning you to claim defeat. It’s another sling shot pulled back, aimed at each one of your weaknesses.
I may have lost the ability to physically hear the sound of my mother’s voice, but her spirit, her gentle encouragement and her passionate stand-up-and-fight attitude still shout so greatly inside of me.
ALS has stolen pieces of my mother, but rest assured that with each item stolen, that much more is gained. My spirit and my life have forever been changed for the better.
Originally posted February 20, 2013.
About the Author
I am a twenty-something, vibrant and creative new mommy to the most handsome and charming little boy! I live a life of passion and find joy in God's creation. I have created this blog in honor of my beautiful mom Linda! She is my inspiration and my best friend! On Nov. 30, 2010, she was diagnosed with ALS, a devastating and heartbreaking disease. My desire is for this blog to bring encouragement and hope to other families who are suffering with a terminal illness. Grab a cup of coffee or some lemonade, and join us as we laugh, cry and celebrate this incredible life we have been given!
Tara Turner lives in Gilbert, Ariz. Check out her blog, A Beautiful Life: One girl’s journey through the trials and grace of supporting a mom with ALS.