Carrey Robinson Dewey, diagnosed in June 2014 at age 42.
Died May 17, 2018.

Prior to my ALS diagnosis, I was living the dream: truly.  After 10 years of teaching, I was a stay-at-home mom to 3 amazing young children, ages 5, 7 and 9. I volunteered at our children’s school, and was an active member at our church, a neighbor, Girl Scout leader, PTA school board member, swim mom, party planner, expert shopper, friend, sister, daughter, mommy and wife. I was busy. I loved my life, every part of it.

My symptoms started with unexplained muscle loss in my shoulder. I couldn’t lift the hair dryer or put plates away, and then the weakness progressed through my arm….and then came the muscle twitching. After 6 months of testing and ruling everything out, it was confirmed: 3 letters—A-L-S—changed it all. I had no idea these 3 letters would not only change my life, but would project to END it in 2-5 years, in the most inhumane way.

I Googled “How to tell your children you have ALS, ” but that search only returned results about telling grown children. So I networked with the other ALS mothers at this website about what/how/when to share with young kids:

I explained to my children, “I have ALS,” and then answered their questions as they asked.

“No, I can’t cut my arm off to stop it.”
“Yes, I will be in a wheelchair.”
“No, there is no cure or treatment—yet.”
“Yes, people die from ALS – [but who really knows how we will die.]”
“No, kids don’t get it.”
“Yes, I will always feel your touch and hugs.”
“No, I don’t know why it has to be me.”
“Yes, I will always be in your heart.”
“No, It’s Lou Gehrig’s Disease, not Luke Eric’s disease.”

I’m still mothering my young! My kids need me, my husband needs me, my sister needs me.  ALS does not pick and choose who needs you; without warning, without cause, without treatment, without cure, it will take you, ready or not.