Ironic loss: an ALS story

I’ve  said that I “lost my voice” on several occasions, usually related to overuse, allergy symptoms or an infection. But, when I say my mother “lost her voice,” I’m describing something much more sacred, more real, much more permanent than the common way I’ve used that phrase in the past.

My mother has been a singer and musician most of her life. She was a self-taught pianist who got her first position as church pianist at the ripe old age of 10. She served as music director in church most of her life and still to this day plays piano at church when she can attend. But, more than a pianist, my mom is well-known for her beautiful, emotional, belting voice and the songs she has written. She thinks about music and lyrics all day long, every day. But not any and all kinds of music – just Christian worship. All Jesus, all the time. The music she wrote and recorded (plus some songs that never were recorded) is a testimony of her faith in Jesus.

That’s why this disease that has overtaken her seems so ironically cruel. Her tongue – the one that confessed Jesus so consistently throughout her life – has now betrayed her. The particular form of ALS she has been diagnosed with has robbed her of the ability to speak or sing. Swallowing is typically a traumatic ordeal, too. Yet, as she lies in bed in-between naps and bitter attempts to take in nourishment, song recordings in her former voice play constantly at her bedside, singing out a message of hope for a better future in heaven. Healed and restored. Whole again in the presence of Jesus and loved ones who have died before us.

If you have a few minutes, please listen to her sing just a few of the many songs she wrote: Angels, It Was For This, Forever His.

My sister gave her a whiteboard to help us (my siblings and I) communicate more easily since it’s nearly impossible to understand her anymore. Rather than using it to speak to us, this is what she wrote: ”

With everything she has left to give, she means it.

For supernatural mercy and grace in the days my mom has remaining here, God, I pray. And for the courage to follow her example and use what we are given to testify to Your love and greatness in all our days – the best and the worst – Father, Son and Holy Spirit, our Triune God, we pray.

To listen to and purchase Sandy’s music, visit her music page here.

Author: ssalvin

Mother of 3, grandmother of 2; Executive Administrator by day, associate pastor by calling, worship leader by heart, singer, songwriter, blogger ... these are the hats I wear. Who I am is a woman "becoming". I appreciate the transformation process that God graciously allows us to experience and gratefully receive it! View all posts by ssalvin