Another Gift from Jo Ann

By Starr Nicole

My mom had multiple sclerosis, and it screwed up my whole family.

This not just her story; it is my family’s story about how we all coped with my mom’s progressive condition in our own different ways. One was ashamed and fled—he was my father. One only came to help once a week—she was my grandmother. Several only came to visit once a year—they were my mom’s two closest friends, my aunt, my uncle, and my cousins. Two had to stay for the long, hard road that lay before them—that was my brother and me.

I’ve kept a journal all my life. It wasn’t to keep track of my heartaches and childish thoughts. It was to give me a place to vent everything I was going through. I used some of my journal entries to write this book. I wanted others to know that not only did my brother and I survive the difficulties of our turbulent childhood because of this horrific disease that our mom had but we actually came out of it stronger, more well-adjusted people because of it. By sharing my story, I am simply letting others know that they are not alone.

• Language: English
• Publisher: Xlibris US
• Release date: May 7, 2019
• ISBN: 9781796032437

Book preview

PRELUDE

M Y MOM HAD Multiple Sclerosis and it screwed up my whole family. We all coped with her condition in different ways. These are my own accounts of a very sad, but true story.

One was ashamed and fled. One only came to help once a week. Several only came to visit once a year. Two had to stay for the long hard road that lay before them: That was my Brother and I.

This is a story filled with failure, triumph and courage; but mostly of unconditional love and unsurpassable devotion. Keeping a journal all my life hasn’t been to keep track of my heart aches and childish thoughts; it was to give me a place to vent everything I was going through. I used some of my journal entries to write this book. I want others to know, that not only did my brother and I survive the difficulties of our turbulent childhood; due to this horrific disease that our mom had, but we actually came out of it stronger, more well-adjusted people, because of it. By sharing my story I am simply letting others know that they are not alone.

CHAPTER 1

I N THE BEGINNING my parents like all parents I suppose, wanted to start a life together and have beautiful children that would reflect and represent the love that they had for each other. My parents’ love for each other was young and strong when they began what they thought would be a happy and normal life together.

In the 60’s there was no such thing as living together first to test out unknown waters and having children wasn’t something that happened unexpectedly. It was planned as was marriage. You dove in head first and prayed that you made the right choice, because if you didn’t you were submerged in your decision for many years to come. If you were lucky everything would turn out fine; if not, you were an emotional wreck, drowning in a loveless marriage. Back then divorce was a dirty word. For a woman, being a divorcee’ was like a sin; you were tainted and for a man, he was labeled a failure.

My parents had only been together a few years when I came into this world, Dad called me his Super Bowl baby; because I was born the year it started. It was a Wednesday. Growing up I had a painting on my bedroom wall of a poem that said: Wednesday’s child is full of woe. I didn’t know back then that Woe meant sadness, but in turned out to ring very true in my life, that’s for sure.

My little brother was born three years later. Life must have seemed so perfect for them back then. They had a cute little house, two dogs, two beautiful children and my dad had a decent job. Really, what more could you ask for?

About the same time I started school, my mom fell in the grocery store. I remember it, because she hurt her leg pretty badly. I didn’t know it was serious of course; all I knew was that my mom had a lot of doctors’ appointments over a very short amount of time. After that, she seemed to limp a lot and my grandma, (I called her gram) was spending more time at our house than usual and I didn’t understand why. She hated our dogs and that was usually the reason why she never visited us for very long.

We had a German Shepard named Gretchen and we’d had her ever since I could remember. My mom said she was my babysitter, protector and playmate until my little brother came along. Then there was Mister; a little black poodle that I really don’t remember when we got him or where we got him from. My brother called him Meesum, because he couldn’t pronounce Mister. He was my mom’s little buddy. He always slept on her lap and when she got up he followed her everywhere; he loved my mom and really just tolerated the rest of us.

I loved my gram, because she always read me books, but after a while it seemed to bother my dad a lot that she was around all the time. I could tell they didn’t like each other very much and I could also sense that it was a very emotional time. My mom and gram cried a lot in the kitchen. The air seemed thick and everyone was on edge, but I didn’t understand why. I just wanted to have books read to me and play with my doll, Amy Jo.

I noticed different things going on with our daily routine. Dinner time was different, because my mom had a hard time cooking and washing the dishes. Gram always had to help her. She let me help once in a while and it made me feel like a grown up. I thought it was fun to play in the sink filled with bubbles and I wished I could do it all the time. I really wanted to help her cook the food, but she told me I couldn’t, because I was only five. This made me very grumpy. My mom was also having trouble going up and down the stairs and I heard Gram yelling at my dad that our house was too big. The washer and dryer were in the basement and this also upset my gram, but I had no idea why.

My mom had been limping a lot since she fell and when I asked her if her leg still hurt she answered me very quickly, saying that it hurt from all the shots the doctor gave her. This confused me, because my mom was the bravest person I knew. I felt sorry for her, because they must have been really big shots to hurt her so much. She always told me to brave when I got my shots to go to school and she gave me a big hug when it was over, so I told my mom that she was very brave and gave her a big hug too.

Everybody used the word sick when they talked about my mom limping so much and I thought that was strange, because she had fallen a long time ago and she didn’t even have scab on her knee like I did when I fell off my bike. I didn’t understand; it made no sense to me. I asked my mom, What kind of being sick makes you limp when you walk? She smiled at me and said Sometimes you ask too many questions. I could tell I was upsetting her, so I stopped asking and just made up stories in my head.

First I thought maybe my mom had the measles like my brother and I had once and her legs were so itchy that she fell over trying to scratch them. I also thought that maybe I had given her my mumps, chicken pox or the scarlet fever. Then I decided that she must have gotten all of those things together and that made her so itchy and so sleepy; that that is why she had fallen down and couldn’t get rid of her limp.

Of course, it wasn’t due to any of those things. I just couldn’t stop thinking about it and trying to figure it out. I even thought about it during nap time at school. I never did get a real answer when I asked my mom, dad, or my gram about it; at least not one that satisfied me or eased my mind. All I knew was that our lives had changed drastically and I was determined to find out why.

CHAPTER 2

I HAD NEVER REALLY heard my parents argue before and I remember feeling scared and worried when they did. It seemed to start all the sudden one night and just never stopped. It was very upsetting and gave me tummy aches, but I didn’t tell them that I could hear them at night just outside my bedroom window. My wall was the same wall that was in our family room and it even had a window, because when my dad built the addition on to the house he left it. Their arguing went on for almost a year and it seemed like every night I would wake up in a panic and out of breath from chasing my dad around in my nightmares. I was always unable to catch him.

One morning I woke up and they were still arguing and I thought to myself, This yelling has got to stop! I dressed myself very quickly; not caring if I matched my pants to my shirt, like Mom always said I had to do. (I was embarrassed later that day at school when I discovered that my shirt was on inside out) When I entered the dining room for breakfast; they got really quiet. My stomach was doing flips and before I could stop myself, I blurted out that I could hear them yelling all night long and could not fall asleep. I yelled at my mom and Dad (something I had never done before) and then I started to cry. I kept yelling at them through my tears, saying that "They had to stop it!" They just stared at me and then looked at my little brother. I guess they didn’t want him to know what was going on. Their yelling must be a secret and then I felt bad for telling on them. Then I felt like I was going to throw up and I thought maybe I was getting sick. My dad got up from the table and went upstairs and returned with his suit cases. I didn’t think anything of it, because my dad worked for a moving company and went out of town a lot.

My parents spoke very quietly in the kitchen before they came back into the dining room. My dad picked up the suitcases and headed for the door; my mom was crying. My brother and I got up and followed him to the door. I asked him how long he would be gone this time and he said he didn’t know; that was a strange answer, because usually he said something like, Only for a few days honey. Then he kissed me on my forehead and kissed my little brother on his cheek, but did not kiss Mom goodbye. That was strange too and tears started to run down my cheeks as I began to understand what was happening. Then something really weird happened; the entire morning repeated itself in my head and it was so overwhelming. It was like my brain pushed rewind and then it zoomed forward, arriving abruptly back into the present; just in time to see the door shutting in front of me and he was gone.

I felt like the room was spinning as the moment engraved itself into my very soul. Every fiber of my being stung and my mind felt prickly. An indescribable sense of utter insecurity combined with a feeling of loneliness and sheer abandonment; quickly swallowed me whole. I just knew that life would never be the same. Nothing would ever be the same.

The tears wouldn’t stop flowing as what just happened sunk in even deeper when I looked over at my mom, who was still crying and I thought, "Was he actually gone forever? Did this really just happen? Maybe I was still dreaming." I ran back into my bedroom and flung myself on the bed crying uncontrollably. When I woke up, I felt relieved for a moment, thinking it was just another nightmare. I got out of my bed and went out into the living room only to find my mom crying in Gram’s arms and I quickly realized that it wasn’t and he was really gone.

The next few days were very hard. I was so mad at my dad, but Mom said I shouldn’t be. She said Dad was just scared and that we had to forgive him for leaving, because he just wasn’t brave enough to stay with us. I didn’t know what she meant, but it did make me feel better to not be so mad at him and be sad for him instead and although I didn’t know it, those were the first gifts my mom gave to me; the gifts of sympathy and forgiveness.

My little brother wouldn’t stop crying all the time; and every single day. All he did was drink his bottle, cry for his daddy, and snuggle with his blanky; a blanket that he would hold onto for years to come; a blanket that he would take with him to preschool despite my mom’s best efforts at getting him to give it up. Ultimately, she would secretly cut strips off of it making it slowly become smaller and smaller, until it was just one little strip that he drug around for a long time; before Giving it to Santa one Christmas eve. I felt bad for my little brother, because he was so sad all the time and I did my best to try to cheer him up every day.

I learned a new word at school that week, "divorce" and I got called out of class every day to talk to a lady in a room that I never noticed before in the school library. I didn’t like the library at my school, because it was upstairs and I was afraid of heights. The shelves were very tall and the whole place smelled funny. The lady was a counselor; I didn’t know what that was, but I liked her and we played a lot of games.

It didn’t take long for my situation at home to become everybody’s business. All the grown-ups kept telling me that divorce was common and normal. They said it wasn’t my fault that my mom and dad were getting a divorce and I knew that, but it didn’t make me feel any better about it! I actually felt sick and embarrassed about it. The counselor lady said it was okay to feel like that, but I didn’t think so. I didn’t like having tummy aches! Sometimes the things she said confused me and made me feel stupid, but I didn’t tell her that. I felt like my world had ended; nothing was the same and I hated it! My teachers told my mom that my schoolwork was really bad too; and I didn’t get any A’s on my report card. That made me feel sad and I was disappointed in myself.

Being excused from class to talk to a counselor every day was making me a target for my peers. They called me names like Special Ed and Retard. They were unusually cruel to me and I thought it was because of the counseling; but they were actually teasing me for an entirely different reason. They were teasing me, because of what was happening to my mom! They didn’t know what to say, so they just said mean things and I had to forgive them, because I thought maybe it just scared them, (like what my mom said about my dad) so I forgave them for calling me names, because she would tell me to do that.

The things that the kids were saying confused me and hurt my feelings. I would get very sad and cry at recess sitting all alone by the big tree at the end of the playground. I thought these kids were my friends, but apparently they weren’t. Sometimes they would tease me right to my face, but I found out that they said even worse things behind my back. I decided that I would pretend like I didn’t care and I hoped that would make me feel better, but it didn’t.

I became introverted and felt very alone. My fears about what was happening to my mom were really beginning to upset me, so one night while she was tucking me in I decided to ask her again about her legs. What she told me I didn’t fully understand; she said that she had MS and that stood for Multiple Sclerosis. She explained it to me like I was a grown up and I pretended to understand, but I really didn’t, because I remember thinking that she was going to get better. I learned later that you don’t ever get better; only worse.

Besides my dad leaving us, this was the most afraid and confused I had ever felt. From this point on knew for a fact that life was definitely not going to be what I expected. Maybe I had just expected too much. Imagine that! An eight year old girl thinking that she had expected too much from life.

CHAPTER 3

M Y MOM WAS leaning on me now more than ever; quite literally . Gram had gone back home, so we were really on our own now. Finally, my brother and I were allowed to help with the cooking and I learned how to use the washer and dryer too, but most of the time I would just help Mom down the basement stairs and she would load the washer and put the soap in. I would put the clothes in the dryer when it was time and take them out when it buzzed and bring them upstairs to her. She would fold them and I would put them away. My favorite part was helping to match up the pairs of socks and she taught me a trick