Living with MS – Through a Child’s Eyes – My Story

It was in our living room on Northwood Court where my brothers, sister and I were told that our Mom had MS.  I remember the wallpaper on the main wall in the room.  It had a vertical flower pattern that kind of resembled corsages.  On both sides of the flower pattern were two lines with a smaller version of the flower between them.  The primary colors of the print were green and gold on a white or cream colored background.  Mom was sitting in a brown, wooden chair that had wicker sides.  There was a gold cushion on the seat and back of the chair.  Dad sat next to Mom and on that wallpapered wall above them hung two brown, wooden birds.

My brother Tim and sister were sitting on the couch that was along the wall to the left of our parents.  Mom was holding our baby brother.  The wall behind us had two dark wooden panels as accents.  One was wide and the other was narrow.  On that wall hung a huge painting, an oil painting that my Dad had painted.  It depicted an old man standing in a door watching a child ride a little tractor.  A woman looked out from an upstairs window.  For as long as I can remember that painting was there and now it is in my Dad’s studio in my parent’s home.  It’s funny how sometimes I can’t remember what someone told me five minutes ago, but I certainly always recall that room.

I knew mom had been sick, but I thought it was just the flu and would eventually go away. Truth be told, I didn’t think much about it. My eight-year-old self was busy going about the task of playing with the neighbor kids.  There was much to be done playing baseball, building tree forts, and catching crawfish in the crick we weren’t supposed to be anywhere near.  Eight-year-olds and children in general, even in their 40s for that matter, are selfish that way.

As a family, we were unsure, afraid, and overwhelmed honestly, about what was ahead for us.  What I remember from those first few years after Mom was diagnosed was that she was very sick and didn’t feel well at all.  Although we were all young, my parents did an exceptional job of helping my siblings and I understand what was going on.  Being the oldest, I felt an added responsibility to be the perfect child.  I was very quiet and didn’t dare do anything that would add to the stress I perceived my Mom and Dad were under.  I wasn’t perfect by any means, but I don’t believe I caused them too much grief.

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What I didn’t realize at the time was what a significant influence my mother’s illness would have on my life and the man I would become.  Many days I watched my Mom struggle to get out of bed to take care of four young children.  MS stole many things from her.  The disease affected her motor skills.  Her balance wasn’t good at all and she fell; a lot.  She developed a noticeable drop foot when she walked.  In addition, she had double vision and was dizzy almost all the time.  It made her very ill and I likened it to having the stomach flu all day, every day.  I’m sure there were many other symptoms I didn’t even know about back then, but Mom wasn’t one to let anyone know about them.

I learned some very valuable things from her during that period in my life.  Most importantly were the qualities of perseverance and strength.  I then thought, and believe to this day, that if she could manage to get up and be a mother, and an exceptional one at that, while she felt so horrible, then there probably aren’t too many things in life that I couldn’t overcome.  In fact, those lessons have been put to the test more often than I would have cared for them to be, and every time I survived one of those tests it made me a better person for having gone through it.

“If my Mom, who has MS, can walk approximately 41,500 miles over the last 38 years, I can surely run a measly 176 miles in seven days for my segment of the relay!”

I always questioned, “why her?”  “Why my mom?”  Even to this day, I still question what I perceive as injustices in the world.  That’s just my nature and something I really struggle with.  However, her illness provided me with an invaluable gift—how to remain strong in difficult times and do what it takes to overcome and persevere.  That gift, in truth, was not just given to me but to my siblings as well.

Mom’s illness with MS also provided some very valuable life lessons from my Dad as well.  I never heard him complain.

Never about the factory job he went off to everyday, at an hour before anyone else even thought about being awake.

Never about coming home after a long day and having to help prepare dinner for the family, especially if Mom was having a bad day.

Never about having to help kids with homework or give baths and tuck little ones into bed.

My parents were truly partners in life; for better or for worse.  My father taught myself and my two brothers what it meant to be a man and take care of your responsibilities.  He was an example of how to be honorable and respectful not only to those you love in life, but to those you didn’t as well.  He taught my sister how she should expect to be treated by any man that showed her attention.  He taught us how to love.  He never had to tell us, we just knew by his actions and what he did for all of us and in the way he treated and cherished our Mom.

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We all were also able to witness firsthand the generosity and selflessness of others.  It was truly a priceless life lesson.  When Mom was horribly sick neighbors and friends would stop by with meals.  They would help make sure my brothers, sister and I would get to all our activities.  Our neighbor, Bev, God bless her, would come over almost every day to make sure myself and Tim were ready for school and had our lunches packed.  She would then make sure the house was in order the way Mom liked it.  She did all of this and never once asked for anything in return.  Even when it meant putting aside things she needed done in her own home, she just did it.  Yet another lesson for all of us as a result of this horrible disease.

During those years and leading into my early teens, I developed characteristics I believe helped form me into the man I am today.  Those characteristics are a direct result of that time in my life and witnessing how my parents met the challenges in front of all of us, as a family.

When Mom was diagnosed it was a scary time, because not much was known about the disease then.  I remember going to a support group meeting as a family and many, if not all of the people there, were in wheel chairs.  I remembered thinking to myself, “Is this what is going to happen to our Mom?”  My Mom was and still is a very active woman.  That’s why it was so difficult to watch her be bedridden, sometimes for months at a time, when she would have an attack from MS.  I cannot begin to imagine what her and millions of others suffering from MS go through on a daily basis, especially when they are having a flare up as a result of MS.

“I am running for those that can’t because I CAN!”

I have distinct memories of Mom playing kickball in the cul-de-sac where we lived growing up. She would be out there with all the kids and would run to first base and jump up and down and scream with excitement. What I knew of the disease at the time was the ability to do that would quite possibly be taken from her, from us, and it might never happen again. I wondered if I’d ever see that excitement in the future. Little did I know that I most certainly would see that excitement again; because my mom’s a fighter! She refuses to give up and years later, after I took up endurance running I would again see that excitement. Every time she comes to watch me race I get to see it. I’ve never told her this, but I look forward to that each and every time. It has an incredibly special meaning to me. It’s like being that little boy in the cul-de-sac again.  I am thankful to God that I still get to witness it.  When I go by she actually looks like she’s going to jump out of her skin and I’m pretty sure the strain on her vocal cords is more than should be comfortable!

Mom Cheering

My Mom has been my inspiration to continue to push when it feels like I don’t have anything left to give.  She is determined to define her life, rather than letting MS define it.  It is her un-daunting example of determination that has led me to do many of my endurance events in the past several years.  It is also why when I heard about the MS Run the US Relay across America that I knew I needed to join the team.  Mom still walks three miles a day.  If my Mom, who has MS, can walk approximately 41,500 miles over the last 38 years, I can surely run a measly 176 miles in seven days for my segment of the relay! It is because of her example that I have the determination to join the fight against MS!  I am running for those that can’t because I CAN!

I’m looking forward to helping Mom realize a long time desire when I cross the finish line of my segment for MS Run the US. She will be there with me and it won’t matter that it’s not 50 miles but rather 50 feet.  I will be alongside her to make sure she doesn’t fall and she will cross the finish line; running!  I’m sure the excitement and joy I’ve come to love seeing while I’m racing will be there tenfold.  Only this time, it will all be for her.

While I do wish Mom never had to endure a life with MS, at the same time I would have to admit, in some ways, I’m thankful for it.  MS has absolutely taken much from our Mom, but it has also given our family so much.  Not having endured the challenges MS presented our family, I’m not sure that we would have learned all the lessons we learned.  Would we have become such determined and perseverant individuals?  Would the gentle, kind, selfless and bold love from our Dad have been as obvious?  Maybe, but maybe not.  We may never know, but one can’t ignore the results.  So, for that I am thankful.  Most importantly, I am thankful for the gift of my Mom and Dad, because their faith, love, and choice to deal positively with this life altering disease taught all of us so much.

So yes, I remember when my brothers, sister and I were told that our Mom had MS.  It was in our living room on Northwood Court.  I will never forget the beginning of one of the greatest lessons of my life.

Be Great!  Be Strong! Be Determined!

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6 Responses to Living with MS – Through a Child’s Eyes – My Story

  1. Becky Walser says:

    Curt, you don’t me but your mom and dad do. My name is Becky Walser. My mom had MS too. I never saw my mom walk and she died at the young age of 59. She has been deceased since . 1982. Mom had MS since she was probably 18 is what they think and at that time little was known about MS. Too, like your mom she was a very strong and never complained. She was a seamstress and tutored children out of our home after school and on weekends. The funny thing is , Curt, I lived on Wintergreen Dr when you all lived on Northwood Crt. I’m from Waterloo. I have so much in common with you and your family and could go on for hours about the trials of MS I respect your mom and all of your family to the highest . Good luck , Curt. You are one of a kind !!!!!!!

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  2. Heather says:

    I cried while I read your story. It is my hope that my children will learn similar lessons from me as you learned from your mother. I will be praying for you on your continued journey, as well as for your mother.
    God bless,
    Heather

    Like

  3. cathy molever says:

    I share so many of your sentiments, as my mother had MS. Most importantly, as an adult, I have realized that her journey (and ours) provided me with many gifts. Thank you.

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    • You are very welcome. It’s interesting that when we look we are able to see hidden gifts in what are otherwise difficult times or issues in our lives. Blessings to your mother, you and your family.

      Like

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