I have many memories from my childhood, up to about age 9, of my mom. Those were the years before Multiple Sclerosis, so I know that that person I remember, truly was "my mom". She had spunk, and I mean SPUNK!!! She was strong-willed and determined. She cherished time with her girlfriends, always having a game night with them. She loved to socialize!!!
I remember always doing fun things, going fun places. We would take walks a lot, even walking to the library at least once a week. My mom did a lot for me. She drove me from dance practice to play practice, recitals and performances. I was one of those children that could never sit still, so I know that I kept my mom busy!
She cared about my education. She made sure I went to church. She was even involved in Sunday School. You know, my mom was a lot of fun. ...a hoot. We played cards often. It was my mom who got me hooked on games, especially Rummy, Boggle and Scrabble. I have memories of her breaking out her Flashdance records, helping me get dressed in my leotard and leg warmers, and then joining me in crazy dancing all over the family room. The more I look back on those years, the more I see that I am a lot like my mom.
In 1989, we moved from our small town in Connecticut to a big city in Arizona. Things drastically changed for all of us. I was no longer the popular girl with many friends. Instead, I was the weird girl that didn't quite fit in. I was bullied a lot. That year, my mom was also diagnosed with Multiple Sclerosis and it slowly began to eat away at and change her.
She was very fatigued. She constantly had painful tingling sensations throughout her body. There were even mornings when she would wake up unable to see out of one of her eyes. Putting myself in her shoes, she must have been so terrified. She too moved away from her closest friends and family, she was diagnosed with a life changing disease and she had a ten year old and five year old to take care of.
As I hit my tween/teen years, I became an emotional mess, of course. My mom and I fought like crazy, we were both very stubborn. We both HAD to have the last word. And man, did we hurt each other gravely with our looks and our words. You know that saying, if looks could kill?
We threw such daggers at each other. I was already fragile. Being the rejected kid in town did a number on my self-esteem. The words, the hateful words we would shout at each other during our disagreements, just made the wounds worse.
I soon began to distance myself from my mother.
I wish that I could go back in time and smack my adolescent self upside the head. Here was my mom, away from the part of the country she had lived in her entire life, faced with a disease that many didn't know THAT much about. Her body constantly ached. She was horribly fatigued. Some mornings she would wake up unable to move one of her legs. She worked full time and would spend 45 minutes driving home in rush hour traffic, only to be greeted by my every demand, as soon as she walked through the door. She would quickly scarf down dinner and then get back in the car to take me shopping or to choir practice or wherever I just HAD to go at that VERY SECOND.
She sacrificed so much and I was VERY unappreciative. But I know we all are at that age. What I wish the most though, is that I had cherished those years with my mom. The Multiple Sclerosis hadn't completely destroyed her memory yet.
I wish I would have had long, bonding chats with my mom, where I could hear stories of her teen years. I want to know what high school was like for her. I want to know about all the crazy things that she did in her twenties.
I want to know what it was like when I was first born. I want to know the silly things that I did as a toddler. I want to know what it was like for her raising a five year old and a newborn baby.
I want to know about all of the guys she dated and the first time her heart was broken. I guess, I just want to know who my mom was.
My mom and I are still distant, but it is no longer by choice. Once I had children, I realized just how much my mom did for me. You really can not fully appreciate the sacrifices your mom made, until you become a mother yourself.
That longing to know more about my mom's past has grown even stronger since having children. You know all those crazy moments as a young mother when you just don't know what to do, but thankfully your mom is a phone call away? Well, I don't have that luxury.
My mom has had Multiple Sclerosis for twenty years and I have watched it completely change her. I have watched her deteriorate before my eyes. Watching something like that, is not easy!
I will say, for having had MS for twenty years, my mom is doing GREAT! She can move around, although she does need assistance from a walker or scooter. She has lost her bladder control and quite a bit of weight. I think she is at a frail 89 pounds. She has to have a caregiver with her during the day while my dad works, but I think it's wonderful, because my mom is a social person, and if she was in the house all day long by herself, I know that she would lose her mind.
My mom is still a firecracker and she still says things that make you drop your jaw. She always will.
But the myelin in my mom's body is being ravaged by the disease and this does affect her memory and thought processes. My mom's short term memory is pretty much shot. She will go to a movie with my dad and will of course enjoy it, but once the credits start rolling, she has already forgotten what movie she saw or what it was even about.
Sometimes she forgets that I have children.
While my mom does still have a pretty good long term memory, it is scattered. She has forgotten many things. It must be so hard for her. I couldn't imagine. I am so thankful that I took up blogging, and that if I wanted to, I could print out every memory that I have on my blog. My mom didn't keep journals, I so wish she had.
I would love to get in touch with the women who were the closest to my mom when she was in her twenties and thirties. It would be great to just meet for lunch and hear the crazy stories, that I know my mom would have shared with me by now.
This May, I am finally taking part in the MS Walk. I have wanted to for several years now, but have always been either pregnant or with a young baby to take care of. This spring, I am finally getting out to the walk. I am walking for all the family members who have been affected by MS and who watch their loved ones try their best to battle a debilitating disease. I am walking for the daughters who will never truly know their mothers, because of this disease. I am walking for all of the courageous men and women who have been diagnosed with MS.
But mainly, I am walking for my mom....for my BRAVE, STRONG, BEAUTIFUL MOM!!!
Please visit my donation page, if you would like to help.
Thanks!
