Showing Up – A Mother Daughter Journey Through ALS

By Joanne Mattingly and Shannon Kennedy

My name is Joanne. I am 74 years old and was diagnosed with ALS September 2016.

My mother, Dorothy, had ALS and died in 1986.

As I navigated my illness, I reflected on my relationship with my mom when she was going through this. I remembered that I spent time with her, but we did not talk about her internal world.  She was a kind and loving person but was not comfortable sharing her feelings.

I, being of another different generation, quickly found out that this illness encourages me to grow internally and share who I am with my family and friends. Their visits, calls and cards raise me up.

Our daughter, Shannon, is an angel in our lives. She stays in touch, brings us meals, anticipates our needs, and has the foresight to keep in touch with The ALS Association regarding equipment. She attends doctors’ appointments and support groups with us. She communicates updates to our family and friends. She is a mom and a teacher. I am thankful for her.

By Shannon Kennedy

“Shan, this is your mom. Give me a call when you get a chance.”

I must have had heard that message on my voice mail hundreds of times.

I knew my mom had an appointment with a neurologist that day but we weren’t expecting test results until after Labor Day Weekend and it was Thursday. How did the doctors expect us to wait?

Well, we didn’t have to wait.

“I have ALS. The neurologist diagnosed me today.”

“Wait. What???? I thought they wouldn’t know anything until Monday.”

Now, I wanted to wait until Monday. As if waiting would change things.

Thankfully, I had sent my kindergartners to lunch, so I could try to figure out how I was going to do what I needed to do next. It’s what my mom taught me to do. You show up. I knew WHAT to do. I didn’t know HOW I was going to do it.

I think I knew before the diagnosis was confirmed…and I thought I was ready. I wasn’t. Is anyone, ever? Is that something you can be ready for? I have to admit that I was in a fog for several months. In many ways, I still am. It’s quiet here, it’s emotionally safer, but it’s not reality. It’s not where my mom needs me to be.

I know that showing up is important. I am learning that HOW I show up is just as important. As I read what my mom wrote about her journey, I realized that I am showing up for the “things” – the appointments, the physical needs, the tasks.

I am more like my grandma. I am not showing up for my mom, emotionally. I’m not asking about or listening to her internal journey. I can’t begin to imagine what that is and I’m scared to know. Scared because I can’t fix that part. I can’t call someone or make arrangements or be in control of that. I don’t think I am brave enough to bear that emotion, but I need to figure out how to be with her and not just do for her.

I am so deeply saddened. Who will I call when I don’t feel well? Who will care or offer to bring me chicken soup? Who will I celebrate with when I have “braggy mom moments” that only a grandma will let you go on and on about? Who will give me insight into my parenting or friendships? Who will…..??? There are so many of these.

Mom, you taught me to show up. I promise to continue to do that. I also promise to do a better job with HOW I show up. I know there are valuable lessons in that.

2 thoughts on “Showing Up – A Mother Daughter Journey Through ALS”

  1. Thank you Joanne and Shannon for sharing your story ! My advice is to always be there for your loved ones as much as possible and do whatever they need you do to ! My sister passed of this disease in January 2103 at 57. She lived across the US from where I live and I didn’t see her the last year of her life. I regret not seeing her more and I pray every day for a cure. We MUST end this disease NOW ! P. S. Thanks to all who share their stories and for their bravery and for their supportive families ! I salute you all !!


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