This is my mom (on the right) and her friend Barbara, back in -oh I don’t know- maybe the early 80s or late 70s. Back when to me, Mom was just MOM. She was just the woman who took care of me and my sister, the woman who made dinner, the one who cleaned the house, the one who left behind a cloud of White Shoulders perfume and a smudge of lipstick on my cheek when she and my dad went out on weekend nights. She drove me to the emergency room when I sliced my leg wide open on the neighbors swing set and was the one who helped dry out my favorite stuffed animal after I left it out in the rain one day. She braided my hair for school and made me drink my milk at dinner. She was the one who let us get a cat, and then took care of it when we didn’t. She was Santa Clause, the Easter Bunny, the Tooth Fairy.
I knew she liked to drink Tab and smoke Kents, and that she stockpiled crime and mystery paperbacks. I knew that she missed her mom and that she loved to travel. She sang loudly and off-key in the car to music my sister and I hated, and she liked to make small talk with the checkout lady at the grocery store. She had a short temper but a great laugh that came from deep inside when she thought something was really funny. She hated her teeth and never smiled for pictures. She had an amazing sense of style and for a while she made most of her own clothes. She hated to exercise but once she took disco lessons and she had one signature move that she used over and over. When she went in the pool or ocean she never got her hair wet. She was a master at floating with a cocktail in her hand. She liked parties but hated that my dad always had to be the last to leave. She was the family Jeopardy champion because she was sharp and smart as a whip. She made tuna casserole for dinner way too often. She had a seemingly endless repertoire of idioms that she could wield on a dime as unsolicited advice or a spot-on reprimand. She liked daffodils because they were yellow and she seemed to know the name of every plant she came across. Her boarding school days didn’t do anything to dim her spit or fire but did instill in her a deep appreciation for and insistence on proper etiquette. I knew all of this, I saw all of this, but I didn’t see HER. All of these things were just things about my MOM that I knew.
I think sometime in my early 20s I started to think of my parents as people and I started to realize that I could have a relationship with them that went beyond the daughter- parent one. There were a few really good years there when my mom and I could have nice conversations over a glass of wine and really connect. I think if we had been contemporaries we would have been great friends as kids, teens, young adults. I think if she hadn’t gotten sick we would have been great friends as grown-ups. But she did get sick, and that’s where the trajectory of the story changes.
You see now, these days, Ceci struggles with the ravages of Parkinsons Disease. And it’s a bitch.
Over the 15 years that my mom has had this devastating disease it has slowly robbed her of many of the motor and cognitive skills that have always defined her. She can no longer boogie down and sing at the top of her lungs while driving down the street. She can no longer tell you the name of every President and Vice President (and who ran against them) in the order they were elected. She can’t paint her toenails fire engine red and some days she can’t put her lipstick on straight. Cooking is a chore because getting dishes out of the oven is complicated. She can’t sew because her fingers don’t work that way anymore and sometimes she needs help putting on her shoes. She can’t string beads to make necklaces and she can’t refinish a piece of furniture when she gets bored of its current state. It’s hard for her to turn the pages of a book. And there are days she can’t get out of bed. She asks the same questions over and over again, and she forgets things we already talked about. We don’t have conversations about complicated things. I can’t ask her advice when my own daughter has me at my wit’s end or when I feel overwhelmed with the everyday chaos of my life.
I feel like she’s lost so much of herself and so, subsequently, we’ve lost so much of her and sometimes that leaves me breathless. But then I think of who she’s shown herself to be, and with that, what we have been given– and that too stops me short. Because despite all of the challenges she’s faced with this disease, despite all of the limitations she now has, she doesn’t complain, she doesn’t give up and she doesn’t give in. I know she has bad days, and I know she gets frustrated and depressed. But she almost always puts on a brave face. She never says no, and she never says “I can’t do this”. She still travels, she still has dinner parties, she still goes out with her girlfriends for lunch or to the movies. She still tries. Every. Single. Day.
She is the epitome of grace in the face of adversity. She is resilient and brave and determined. She is a reminder that life doesn’t always turn out the way you expect it, but if you try, if you really try, you can make it work for you. Sometimes really shitty things happen that you can’t control, but if you have the right attitude and enough determination those things won’t destroy you. They won’t define you and they won’t destroy you.
Mom, I knew you back then, but I didn’t KNOW you. Now I know YOU. Getting to here from there didn’t happen the way any of us wanted, and I’d still change it for you if I could. But, it’s your life, it’s my life, and all of it’s beautiful even when it’s scarred and imperfect. Thank you for teaching me that.
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