Never Forget

“Never forget to enjoy each day even if your life isn’t exactly what you want it to be. The blessings are always there though sometimes we have to look a little harder”. -Melissa Althea Reagan Smith, shortly after her diagnosis.

Bruce singing to mom on her birthday.

Bruce singing to mom on her birthday.

The way I remember my mother is sick. Her sickness, I mean. I remember wheelchairs and hospital stays, hospital beds, nurses.

When I think of her, it’s not her love of rollercoasters or chocolate, it’s not her never ending kindness or patience, her willingness to help, or her smile. It’s her suffering that I recall most clearly. Maybe because at the end of her life, that’s what she did the most of. And she did try to stay positive. But no matter how gallantly she tried, or the significant hope she portrayed, she recognized the end. My mother had ALS, sure. But I wonder if that was really what killed her.

I’m not sure what snapped in her, what preempted this realization, but one day I came home and sat in her room and someone [I can’t remember who] told me she had decided to stop eating and drinking. It surprised me that this was what she wanted. It was the opposite of everything that was portrayed to me and the general public about ‘Melissa’s poise and grace in this time of intense struggle.’

But looking back, I wonder if it wasn’t what she wanted all along. How could she have wanted this? To waste away until she was just a husk of herself? I hadn’t heard my mother’s voice for years before she died. As I write this, I struggle to recall it. She cut all her hair off and lost her modesty. Her life came full circle as I bathed her in the handicap-accessible bathroom we had built. She gave up what could have been her last few functional months to carry and birth my beautiful sister, Vivian. She sent my other sister to live with her aunt. She was an observer in her own life- at the mercy of flawed technology for communication, unable to hold her head up. She had bed sores you could see her spine through. So of course she wanted it to end.

Does that for some reason make her less perfect, less angelic as she was so portrayed? Was that even how she wanted to be portrayed to begin with?

My mother was a human being. She was sweet and wonderful and much loved but goddamn it she was flawed, too.

She endured the end of her life with all the dignity she could muster but I know she stayed because of us.

If I got diagnosed with ALS tomorrow, I would not let it get that far, not by any means. I would absolutely cut out early and that is the honest truth.

The point is, I was surprised by what I perceived as a change of heart but maybe that was what she wanted the whole time. She stayed alive for us, for me, for my sisters, for her sisters and her parents and her husband. Maybe she knew what it would come down to from the beginning. Of course she did.

So maybe nothing snapped. Maybe she was biding her time. And I wanted it to end so badly, for her sake. Seeing her that way killed off pieces of me that will never return. I am proud of the decision she made, but it haunts me. I remember her typing “I’m so hungry, so thirsty” with her eyes on her ERICA machine the next day. I remember my stepdad breaking at her words. I had to leave the room. And some morphine and a short coma later, she was gone.

This was four years ago.

And my beautiful, flawed, selfless, amazing mother is gone.

Don’t let anyone tell you it gets easier. They lie.  

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  1. Beth
    Sep 14, 2014

    I remember meeting your mom at Hot Dog King on Jefferson before she and Bucky got married. I remember her tiny, dainty hand, southern drawl, and beautiful hair. I remember her accepting me, drawing me in, and her beautiful warm smile. I remember the respect and love she had for my children, how they loved being with her and their stories of how she could make them laugh. I remember her candor and perseverance. I can remember crying and being overwhelmed by her struggles in life. Because of her, when days are not what I want them to be, I can find the good stuff there to tide me over, kick myself in the butt, and follow by example.
    Thank you for being the voice the motivates us to think, question, accept what we can, work on what we can’t, live, love and laugh.

  2. Sunnie Ann Wade
    Sep 14, 2014

    My Missy was the bravest human being I have ever known. I don’t think I could have done what she did or endured what she endured. All I know is that she always, always put everyone before herself. If she stayed longer than anyone expected her to it was because she was only being human. Not wanting to leave her 3 beautiful children, her parents, siblings, husband, friends and on and on. That was our Missy. Her capacity to love was supernatural. Can you imagine what is was like for her to give her child away to her sister, I can’t comprehend this most unselfish of all acts. I believe she could not endure any more pain and suffering and wanted to be with her Lord and He welcomed her with open arms and He was very please with her. Isn’t that all we can hope and ask for? Yes, Missy was just a person, but dear God what a person she was. Everyone could take a lesson from her life, her completely unselfish life. I will miss her to the day I die and she will always be my hero.

  3. kathy hornsby
    Sep 14, 2014

    CiCi, I understand what you mean about only remembering your mom sick. She was sick for so long and during very critical years of your life. (Even at MY age, I could only remember my parents sick after they died…but that got better for me, and now I have many more memories of them prior to their cancers.) I suggest you start making a list of memories you have of her BEFORE her ALS. You probably have a lot more than you might think…and as you remember those pre-ALS times, you’ll remember more, snowballing, as thoughts often do. Get out more photos of her (I probably have some that you have not seen that I could find!) and surround yourself with written and visual positive memories. I think you’ll be able to “even out” the memories of her illness. Obviously, those memories will never disappear….but I think you might achieve a balance.
    Love, Kathy

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