Today is a typical Saturday afternoon in the middle of October, and Mom and I are just finishing our ordinary lunch of a peanut butter and jelly sandwich, a bag of chips, and a glass of cold milk. My dad and younger sister have gone to cheer on the Bulldogs at a football game, so Mom and I have the entire house to ourselves. As I get up to clean the mess, I anticipate what is coming next.
“You ready to watch a movie?" Mom asks me.
“Yeah, I can’t wait!” I respond eagerly.
This being our special mother-daughter retreat, I know that I don’t want to miss our weekly movie, and long, much needed nap. It’s like an escape from the hectic world to a place where everything is at peace and I can just crawl into bed with my mom and relax.
After rinsing the dishes, I hurry into my parents’ room to find the channel changer, which seems to mysteriously disappear immediately after each use. I turn on the television to search for movies she has recorded for us to watch. Now that I am a teenager, we have been watching some great chick flicks, and we both agree that if the movie doesn’t make us cry, then it wasn’t that good. I draw back the covers as my mom comes into the room where she pulls up to her side of the sleigh bed. She scoots up in the wheelchair, bends forward, and puts her hands on the armrests to help her stand. She then leans forward and places her hands firmly on the bed, waiting for her legs to stop shaking before she falls rather awkwardly into bed, landing diagonally. And there I am waiting to help her adjust by lifting her legs up onto the bed, pulling her arm to straighten her body, and arranging the pillows in a comfortable position to watch the movie.
As I close the double doors to my parents’ room, Mom says four alarming words that no one likes to hear:
"We need to talk."
She says this with a nervous tone in her voice, and my mind reels to what I might have done wrong. Were my grades dropping? Was my room too messy? Did I exceed the number of text messages again? What did I do? Because I cannot think of anything I could have done wrong, I start to relax, and I ask my mom what she wants to talk about.
"Do you know why I am in a wheelchair?" she asks with her eyes cast down, fearing my response, dreading what she will have to explain.
Caught off guard, it takes me a second to answer. "You have ALS," is my simple reply.
"Yes, but do you know what ALS means?"
There is a long, silent pause as I rack my brain for yet another answer; one that I know is childish. I meekly say, "It means your muscles are weak, right?" I suddenly realize that this is all I really know about my mom's condition.
I am thirteen years old, Mom has been in a wheelchair since I was about six, so pretty much most of my life. When I was little, she told me that her muscles were weak and not to be worried. Of course, as any child would, I completely believed her and was not worried in the least bit.
I recall a moment in the fourth grade when Mom came to school on Friday like she usually did to help my teacher grade papers. During recess, she came outside with us, I hopped onto her lap, and she gave me a ride to the playground. Everyone in my class was fascinated by her super-cool electric wheelchair that had a beeper horn and tilted back like a recliner. I could tell they were jealous that I got to ride on the awesome chair. My friend Catherine, who I had known since kindergarten, approached me and asked in a squeaky, little girl voice, "What's wrong with your mom?" I gave the simplistic reply that I had always been told, “Her muscles are weak, so she can’t walk.” My friend was content with my answer, so we went back to playing two-square on the blacktop.
I am curious as to what my mom wants to tell me about ALS, and also wonder… why now? Why all of the sudden, tell me new information that I haven’t been told before? Maybe it’s because I am older and more mature, but really I have no clue.
Now, I climb into the queen size bed and snuggle under the cold, down comforter. As I do this, Mom slowly explains that I am right, she does have weak muscles, but that is not all. As she starts to tell her story, I lie on my back staring at the ceiling, listening intently to her slurred voice that only I and a few others understand with ease.
Sometimes I think not being understood is the hardest thing for my mom. It’s especially painful when she comes across an old acquaintance while out and about. A particular incident I recall was when we ran into a woman in the grocery store, someone I did not recognize. My mom introduced her to me as Renee, and later told me that they went to high school together. Renee looked at me and told my mom how much I had grown since the last time she had seen me. When Mom commented on Renee’s family, I could tell by the puzzled look on her face that she didn’t understand what my mom had said. Renee is like so many others, they pretend to understand, but in their eyes, I can see they don’t; they are only trying to be polite. This is when I get irritated! I want to scream at her, "How can you not understand?! Can't you see that you are hurting her?!" This battle inside my head is so painful because the disappointed look on Mom's face acknowledges that she was misunderstood. This kills me! Mom looks at me pleadingly and I know she wants me to repeat what she had said to her high school friend. And so I do, and I always repeat what my mom says for the old acquaintance in the grocery store. I think the worst part of this agonizing incident is the way Renee carries on like nothing happened and smiles and laughs and says, "It was nice to see you again."

I refocus on my mom’s story, which starts, “I was thirty when I noticed my muscle was twitching in my upper left arm. A couple months later, the twitching spread to my forearm and hand, and it seemed to cause weakness in my arm. I went to our family doctor and after he viewed the x-rays and found nothing, he put it off as a pinched nerve.”
I listen to her as she explains all the scientific facts from the medical specialists, and the various painful tests and examinations she underwent. I try to imagine what my mom had been going through and find that thinking about it makes my stomach turn and I start to get nervous.
Her voice quivers as she recounts some of the possibilities the neurologist considered, including Multiple Sclerosis and even a serious brain tumor. I notice the tears welling up in her eyes as she travels down her painful memory lane. The tears start pouring down her face as she gasps for air. I have to look away from her eyes because I know that as she starts to cry, so will I. But it’s too late, as silent tears stream down my face. I taste the sad, bitter drops of salt. Hearing her cry scares me, but I do not want her to know that I am afraid, so I grasp my mom’s hand and give it a tight squeeze to reassure her. However, the thought of a brain tumor terrifies me because it might have killed her.
Mom tells me, she returned to the doctor’s office a couple of days later for the test results. She says that while the neurologist sat behind his desk, he leaned over to search his bookcase. He picked up a rather large, thick book, and laid it down with a noticeable thump on his desk in front of him, slowly turning the pages. I can see him doing that, and can only imagine the tremendous tension that she felt at that moment, waiting. When he found the page he was searching for, he said, in his most awkward bedside manner, that he was ninety-five percent sure that my mom had Amyotrophic Lateral Sclerosis. He asked if she was familiar with Lou Gehrig's disease and she said yes, but she only knew that the famous baseball player had died from the horrific illness. The neurologist explained that ALS is a terminal disease and that she had only two or three years to live, during which all of her muscles would deteriorate and in the end her lungs would fail her and she would die.
My eyes grow wide and my heart pounds like hail on my window during a winter storm. Time stops or at least slows to a dramatic quiet. This startles me. A million “what if” questions consume my mind and flood my emotions. This new information means that my mom should have died when I was a mere seven years old... What would my life be like without my mom? I don’t want to consider the answer to this question because it terrifies me. As I slowly start to calm down, I begin to realize something truly remarkable. It has now been ten years since my mom was diagnosed. There is obviously hope!
At the end of her story, I give her a big hug, and her tears start to subside. She asks me what I think. I answer, “Well it’s been ten years hasn’t it?” And she now knows that I am not scared.
My mom is a miracle. She has an unfailing faith in God that will keep her alive and able. Although my mom is confined to a wheelchair and is forced to rely on others, she is completely content with her life and lives each day to its fullest. My mom’s future is unknown; there is still no cure for ALS. But in reality, all of us are dying, just some sooner than others.
We talk a little longer, and a new sense of peace and hope comes over me like a warm soft blanket. I don’t remember what movie we watched that afternoon, but it doesn’t really matter. All I hope and pray for from that moment on is that I will be watching many, many, more movies with Mom.