Love Beyond Memory
For many years, it was just my mom and me. To say we were connected at the hip would be an understatement. She drove me to every dance practice, choir rehearsal, youth group event, and friend’s sleepover. She never missed anything, all while working sometimes three jobs at once. She rubbed my back when my heart was broken through friendships or boys. She was there to pick me up the first weekend away at college when I was ailed by homesickness and convinced me to go back when I thought I wasn’t cut out for it. She brushed my hair back as I labored in the hospital and was there to kiss my forehead when I brought my baby boy into this world. She dropped everything when he was sick and I couldn’t afford to take a day off from school or work. She is a breast cancer survivor, single mother, the best maker of PB&Js, the kisser of my owies – literally as a child, and figuratively as I’ve grown older. She is the most incredible back scratcher, the listener of all my stories, my first phone call when things are sad or hard and my first phone call when things are happy. She is my biggest cheerleader, the first person to ever love me and the person who will always love me most. Our relationship wasn’t always perfect. We sure knew how to get under each other’s skin and butt heads (probably me doing most of the getting under the skin and head-butting). She sacrificed so much for me, though. I took all of it for granted.
My grandfather had Alzheimer’s, and while I was young and
don’t recall too much of that time-period, I do remember the fear it stoked in
my mother. Shortly after his diagnosis, she quickly picked up every Sudoku and
crossword puzzle she could get her hands on, hoping to keep her mind active and
fresh. Several years ago, she changed her diet, avoiding anything that might
lead to the same ailment she watched her father endure. I don’t think she’s
enjoyed a cookie, a piece of cake or ice-cream in a decade, trying so hard to
avoid a disease that unfortunately, was already making its way through her
brain without her having any knowledge of it at all. She did everything she was
supposed to do – never drank or smoke, ate all of the things she thought she
was supposed to, attended daily mass, prayed the rosary, tithed, worked hard,
cared for her children and grandchildren, forgave those who hurt her, and loved
unconditionally.
It all started about 5 or 6 years ago. Little things here
and there that felt off or not quite right, easily dismissible because she
would quickly return to normal behavior. We all knew this disease was her
biggest fear, so denial seemed like the easiest way to avoid the inevitable. I
wish we would have done something more then. Would it have changed the outcome
of where we are now? Probably not, but the thought and guilt still haunt me.
For the past year, she and I have sat together in countless
doctors’ offices, asking us the same questions over and over, only for them to
hand us a pamphlet and refer us to the next specialist. She has been poked and
prodded again and again. She does not understand
all that is happening. As doctors word-vomit their rehearsed medical jargon to
just another patient on their roster, a glassy expression takes over her face.
We leave each appointment in the same way: her crying on my shoulder as if
she’s just heard the diagnosis for the first time and I am once again left with
no roadmap on how to navigate this terrifying journey. To say it’s been
exhausting is an understatement.
Today our relationship looks somewhat different than it once
did. Rather than chatty conversations, it consists more of quiet moments side
by side - her contentment in the silence. It consists of car rides to appointments, words she
can’t find, memories lost and new memories unmade. Her once parental-worry now
transferred over to me as my role transitions from daughter to caregiver. And I
now worry about her. I have a to-do list a mile long, all the while I am
grieving the mom I once knew. I’m grieving a future I’m not sure will be
possible. I’m grieving what I know will come next, dreading what the next
weeks, months and years will look like. I’m heartbroken. I wonder if there were
places she never got to see but wanted to. I wonder if there are more
experiences she would have liked to have. I wonder if I could have done more
earlier. I wonder if one day the same fate will be my own.
It’s a strange and painful thing as the line becomes clearer
defining the mother I once knew and the disease. We are lucky because right now
we can still catch glimmers of her and she is still very much here physically. I am grateful for that. But there is always a dark cloud hanging over, wondering
when this cruel disease will take its next evil turn. I feel my heart breaking
in my chest, and the one person I want to cry to is her. I keep waking up
thinking this is all just a big misunderstanding and she will get better, take
me in her arms, and tell me everything is going to be ok.
For now, we wait. There are still many questions unanswered
and a treatment plan awaits those answers. For now, we prepare. One step at a
time, one day at a time. For now, we hold on to those glimmers. I am slowly learning
to find beauty in this new relationship, this new Maureen, this new mama of
mine. While there is often frustration and pain, I find solace in her bliss and
happiness. She truly is happy. She looks at the clouds and stars in the sky
with the wonderment of a child. She lives only in the present moment, not
thinking about the disease, not worrying about tomorrow. There’s beauty in
that.
She recently turned 75 and on her Birthday she said to us,
“I can’t believe it. It went by so fast”. We go through life with the knowledge
that it is impermanent, yet we live as if it isn’t. Moments are fleeting, years
fly by. Watching someone I love slowly disappear has changed my outlook on life.
While it’s certainly a daily practice, I’m trying to be present and find the
beauty in this wonderful gift we call life. This disease has taken so much and
will only continue to take more, but if I’ve learned anything, it’s that emotion
doesn’t need memory to exist. Love doesn’t need memory to exist. We speak a
different love language now, but the love is still there. How lucky I am to be
loved by her, and that’s really the point, isn’t it?
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