The Never Ending Journey

Marie W.

I was a child growing up in a small northwestern Nevada town, a Wild West version of Mayberry, where life was an adventure. I always knew that my family was different. My dad was the county sheriff while my mom managed a restaurant. My parents were kind, hard working and believed in giving everyone a chance. If my dad was like the Andy Taylor character, then my mom was the young version of Aunt Bea. After school, the kids would rush to the jail to get their daily fix of hard candy my dad kept behind his desk, and my mom always made sure that prisoner [jailed there] had a least one home cooked meal a day. During the holidays my parents would be the 'secret Santa' to many families, telling them that Santa left them at the office by mistake. Thanksgiving, Christmas or even Super Bowl Sunday for that matter, [my dad] would bring home whoever was bunking at the jail and they would break bread with my family. I thought that the kindness my parents showed was common in every home. Little did I know at the time just how different my family was and how in the years to come my family would change.

I didn't understand the monster that was lurking inside my mom, waiting for the right time to show itself. As the monster was quietly yet aggressively taking over, my parents went to great lengths to shield me and maybe in some way themselves, from the unknown. As I got older I noticed my mom was tired more often, and we no longer were able to run, ski, hike or even go shopping together as often as we had before. I would hear people whispering as we walked by, "is she drunk?" I wanted to yell at them, at her. I wanted my mom back. I could feel the resentment and selfishness growing. Why did she have to suffer? Why did my family have to suffer? Why did I have to suffer? I wanted it all to be the way it used to be. I didn't realize that the journey I was on would teach me about faith, hope, courage, and the devastating effects of Multiple Sclerosis.

I graduated from high school and moved 500 miles away to attend college. I wanted to be far enough away that no one would know who I was. I wanted to [be] anonymous. I wanted to be normal. I thought that by leaving the monster behind, I didn't have to see my parents every day, and could deny to myself that my family was changing. My dad retired to care for my mom who no longer could work because the monster had taken control of her legs. I didn't bother to think that I was compounding my parents' pain, I just wanted my family back the way it used to be. However, after college I moved back home. I had grown and realized that they needed me as much as I needed them.

Several years went by and I was sitting in the doctor's office with my parents waiting to hear the prognosis. My dad was sitting next to my mom, holding her hand as she sat in her wheelchair. The doctor entered and looked at us and said, "She's not going to get any better, only worse." I saw my dad die that day, not physically, but emotionally. He had put all of his faith, love and strength into caring for her, but he couldn't fix her. The monster was too strong. Three weeks later I sat alone in the waiting room of the ICU. I was trying to bargain with God not to do what I knew was inevitable. How was I going to tell my mom that the love of her life, her soul mate had died? How was I going to go on? Yes, I was an adult with a husband, and a small child, but I still felt like that little girl who needed her daddy to make it better. How could I care for my mother who was lying in a hospital bed herself, fighting a monster that just would not relent? I kept hearing myself say "surely God will have mercy; I'm not strong enough to do this on my own". The doctor came into the room and told me the news I didn't want to hear: "your father didn't make it." How could that be? How could my dad leave us when he knows how much we both needed him? I wasn't' ready for my journey to take another turn, but "God knows best" were the words I heard whispered in my ear.

I buried my father and realized that it was now my responsibility to care for my mom. The Multiple Sclerosis had taken over despite her valiant fight. I saw her courage and hoped that somewhere, I possessed some of the same. I thought back to my childhood and knew that I needed to rely on the faith my parents instilled in me. With courage and faith I knew that together we would start this new journey. The years went by and the monster took its toll. My mom was mostly bed bound and in more pain as each day went by. We spent hours caring for pressure sores that seemed to come and go at will. Two of them decided to make her their permanent home. My mom had a great sense of humor, and felt that if they were going to be a part of our family we might as well give them names, and so Stanley and Beatrice were born.

Meal time was a challenge most days. My mom was never much of an eater, and her illness didn't change that. I had to come up with new and inventive ways to entice her to eat. The medication made everything taste bad, all except chocolate, or at least that's how it seemed. I would hide protein powder in the pudding she would eat when my son and she would lay in her bed watching John Wayne movies. Chocolate milk shakes packed with calories and protein were also a favorite when my daughters and she would watch old movies like "the Ghost and Mrs. Muir". Whatever it took to make sure she was getting the nutrients she needed to keep her going was the motto we lived by.

My mom wasn't a crier; in fact she laughed a lot in spite of all the pain she was in. She always said that she had done enough crying. The monster had taken enough already; she wasn't going to let it take her laughter. My mom could no longer feed herself because her muscles were so contracted due to the constant muscle spasms. She suffered from seizures caused by plaque lesions in her brain along with the loss of the ability to communicate coherently. I saw a strong, once vibrant woman trapped in a shell that now was weak and broken. I knew that once again my journey was taking another turn. Soon our journeys would no longer be the same. The morning came when once again I heard a whisper "God knows best" and mercifully released my mom from the burdens of the shell that no longer worked.

As I sat alone in my room one night trying to make sense of this journey, and all its twist and turns, I realized that the monster I had hated, detested and tried so hard to run away from was just as much a part of me as it was my mom. All those years I tried to ignore it, it was shaping who I was, who I was becoming, who I am.