Let's Do It For Mom

There was never I time I thought that I would find myself in a global pandemic holding my frail and fragile mother's hand, preparing to say goodbye. Or actually never being able to come to terms with what 2021, another banner year for confusion and loss, had in store for us. When you thought that life's crisscrosses were a little more navigable, always expect the unexpected. My family is an Autism family. I am the mom of a young man on the Spectrum. He needs extra assistance with daily tasks and self care. He is soft spoken, quietly confident yet sheepishly timid, seldom assertive but able to squeeze his way into a comfort zone in this crazy, very demanding world. There are times that he goes deep within himself and I have to fish him out. But we all have our days. You become their whisperer and look for clues to help in their search for self awareness. I have often struggled with how his adult life would look, based on the status quo. But honestly, that was not an internal debate that I allowed to take over our lives. Instead, as a Leo, I lead with love and allow those chips to fall. I have found myself being the poster cheerleader for hope and faith beyond expectations. I have zero expectations beyond finding happiness, which in itself will lead us to a true gladness. Then, the light will come on. Our purpose can be reached there. Illumination is the process of coming out of the perpetual darkness. I won't let this light go out without a fight.

The true test of my courage, the Leo zodiac badge of honor and character would come with the new year 2021. It would not give me time to think nor rest, nor consider giving the bare minimum. The measure of my intestinal fortitude was totally tested. Who will I fail besides myself? Will I fall apart before being able to make that difference? What is our version of right or coming to par? Does society actually define that for us? This balancing act of caring for two disabled persons as a caregiver, holding lives and feelings in my very hands, would become a moment of gaining a strength never tested. Facing the unknown without a safety net. Going into a darkness again with another heart to protect and hand to hold through uncertain times. Another moment to find a reason to choose hope above all else.

Flashback to winter of 2020. We have been through fear, isolation, and this unforeseeable trial by fire through the COVID-19 lockdown. My mother is elderly and of course, one of my fears was that she'd contract the virus, maybe while doing her normal activities which seemed to make her so happy, including working part-time with interaction with the public. She always sounded pretty well, which I guess is an odd thing to say. Voices aren't bodies and cannot project our actual health status. But to use the expression. So I went along in my personal family isolation, and connected with Mom via phone call. I loved to hear the spunk and sass in her tone, this joy and ebullience for living a life on her own terms. Independence was her one thing to hold close to the chest, like a rare jewel. No one else can take that and you would be absolutely insane to give it up willingly. According to my mother, it was the last thing to go.

As we bid a close to "good ole" '20, to capitulate the year's gloomy and catastrophic scene, my mother made to me one of her normally upbeat phone calls with tears in her voice. She said "My mammogram came back, and it doesn't look good. She found a lump". What just happened to me, to us? This year turned my life upside down and sideways, like a rollercoaster in a ruthless spiral. We are in a league that many find themselves playing in. Team fighting cancer diagnosis. For the life of me, I only wanted to become the light in her world. Illumination. Again, you have to remind yourself that this is not a test. Each second is being counted down toward the rest of your existence. Make them count. Don't take that moment to stumble on the why's or the how's. Just move ahead one foot before the next, being careful not to fall apart.

It was December. Her birthday month. Sagittarius. Nearly a Christmas baby. This year would be the last Christmas, but I would have believed that we were working on a decade more. Mom was a little glum of spirits, and had been looking forward to the diversion I had planned for her in this short stay at my place. Encapsulated in my mom's DNA are these awesome stories that make me giggle and sometimes cringe. Memories of my childhood both stellar and sour. She brought over some really cute things for the COVID puppy we bought affectionately named Quinn. A little ceramic water and food dish with bones on them. And a tug-of war rope. Quinn then began to show how little he had seen new humans, taking every chance he could to pull assorted items from her luggage (it's only funny when it isn't yours). Those were just a few things from that couple of weeks she'd spend while we visited with a surgical oncologist while trying to make sense of this diagnosis.

We went for a ride around my neighborhood to see the holiday lights, something that always captured her childlike wonder for the season. The bright and loud display captivated the imaginations of each passenger, as this was that drive-through experience we have come to know over the pandemic. There seemed to be a Halloween kind of vibe to the pulsating rhythm of the songs all in time with a larger than life spectacle. She commented that the music was not very "Christmasy." Mother came from a small town. They didn't go big or go home. The over the top moment did not fall on us as just an Xmas light display. I had in the recesses of my mind that Mother had mentioned Stage 3 cancer was the designation. This intrinsic need to know that we had an incredible memory in the making was an overtone of this night. I was not ready to call this a loss for her. More just the start of one of the toughest journeys we would face. Together. Which I thought would at least be a consolation for the days, months, and years ahead of her. As a team. I would supply the right care team and she could be the dutiful patient she always was. Unified. Together. Strong.

I was told that "If anyone could fight this, it's your mother." I believed them, too. She'd been a widow for about a decade, and losing him would have had to be the hardest pill she'd swallowed. Taking care of herself was always priority #1.

I loved that both Mom and my son were watching the beautifully wondrous scene almost as if they were not only grandparent and grandson. But on a more intimately knowing level, as two people in throes of their own struggles, gaining solace. Separating a moment from the noise and muck and mire. It breathes. Inhalation and exhalation.

Together. I loved to see her with him, sharing a meal, a drink, or a sweet treat. Sometimes they would even sit side by side in the back seat. My son liked her being as close as a reach away. The grin across his face. And she was so protective and watchful. The comfort of just being in the same space is incredible. It makes life easier to take in. It eases your mind. Family. Words aren't required, just that knowing glance. Love. Breathing freely.

We would do life together really nicely, our new extended family of four as things began to take an extraordinary turn. In early Summer, Mother suffered a stroke following a surgical procedure. Another chip, or a huge gaping hole out of our ability to predict any outcomes. What may seem most reasonable may just as well be a recipe for destruction. And the most innocent of us will also suffer along with their families. Alzheimer's dementia would onset with this severe event immediately as would all the duties that come with someone who has mid to latter stages of this disease. I had seen this before. My father was an Alzheimer's patient. I saw the light fade, his expressive countenance become vacant. I knew that his had been years along before we said goodbye. And it was so many years of great times that I nearly forgot that there was no cure for what ailed him. To have some sense of coming to terms instead of taking time for granted. Which as his baby girl, I had a need and greed about being present with him, a shadow. I gladly took all he would offer of time, counsel, praise, wisdom, and teachings. I could have sat there forever at his bedside enthralled at the commonplace. It was Dad. There was something in the way he loved that made it all okay.

I felt this light through him that the world could not make fade away. Alzheimer's was the only thing that was capable of dimming the bright glow of his brilliance.

Why now and why my Mom? The way I will look back and see the story of my father unfold all over again. How her voice brought me and my kids such peace and comfort. The way she could hold incredibly meaningful conversations with light and intricacy. A phone seemed to have no miles nor distance. She pierced through with care and love that my heart ached for. Will I see her lose this beauty as a rose fades into a wilting season. How is this the way the story will be told and why will this be my story to tell?

My son and my mom had a special relationship. It was based on the power of facing and overcoming obstacles. She always had a very sensitive view of how Autism affected him. Perhaps at times, she may have found him to be pitied. She seemed to lament that her grandson had to go through something that she couldn't fix. This heavy heart she carried silently as to not discourage me from my heart of hopefulness. She saw and heard tales of the old guard, how the kids with disabilities once were segregated and sectioned off from others. How a fledgling existence often came with that imposed mental health or medical label. And how much the parent had to do to support their child. That there was so far he could go in life, to keep my hopes and expectations under check. To not push the envelope. (Leos always push envelopes, lol). That somehow something was broken, which will always come to the surface.

I loved her for being so sensitive to and wary of the juxtaposition of being neurodiverse in a "regular" or "normal" world. These are complex ideas and her gaining a bird's eye view of how living with Autism feels when I was a divorce'e living at home with my parents truly humbled her. She honored my will to kick and scream into a normality. To give him more than a fighting chance to be happy. This became a reason for being audacious and resolute. I saw the beginnings of what I call my "Bulldog tenacity". You could also call it that "Mama Bear" side. I saw him as a reason to fight. She would see me fight very hard for inclusion and acceptance. We still have far to go, but I would not have had this any other way. Life lessons stretch how far you'll go.

I think I have had a story quite like "The Grinch". Albeit, I was never out of touch with how to love or any lack of capacity for emotional connection. Leo tendencies of compassion and sensitivity toward others always prevailed. But my heart did grow about 10 more sizes through my son. And would grow even larger in facing the challenges of my mother's unexpected and rapid decline of her health.

She and I would sing together many mornings when she awakened in her hospital bed in the middle of my living room. Her soft voice barely audible at times, she would mumble a lyric and I would chime in with the harmony. Once she sat in her chair and began singing "The National Anthem" We fed her some lines, then she'd pick up the rest. We were wowed when Mom hit that little Whitney Houston note on "land of the free". She responded bashfully to our praise of that killer run in that characteristic self deprecating way.

"The Voice" was her favorite show. She would tell me about every episode, her favorite judges and their tat-a-tats, and which singers she felt had a strong chance. I knew that she'd watched intently and listened with a critical ear. Song and music was always a common thread for us to relate with. She was a mean piano player back in her day. There were not many songs or artists that were foreign to her. She seemed to light up when she listened to great singers and often sat spellbound. As for me, I'm the one she would have to tell to stop interrupting the radio with my Karaoke renditions of the local Top 100 pop station. Maybe there was an unmet talent in her that longed to be free, that lived vicariously in the hopes and dreams of young or second chance talent. The American Idol show didn't make audition stops back in her day. Many of the best voices ended up unfulfilled, at a 9 to 5 of shift work with a side hustle of performer in a town's choral group, or at a local theater guild. I recall my mother having the most gorgeous and lilting voice. Once, when she sang at her workplace, they ran so fast to hear her, they tossed the hose on the floor, water going this way and that. She left them speechless. As Mom had done before for me, she opted to take the back seat and let others shine. Sounds just as unassuming and humble of her as I'd expect.

She got to know Alexa pretty well. Once she even yelled out for her, expecting a reply of some sort. Yes, she knew Alexa grants song requests. To the aging population, that is a really good disc jockey. Generational gaps may seem as a distancing barrier to relating to some, but they really denote what we take for granted in our much more automated world versus all the inconveniences our parents or in particular "Boomers" and "The Greatest Generation" made it through. Or how they managed to raise and nourish and protect their kids. No Alexa, no Siri, no Cortana. Just sheer will and resolve to do it on your own and go fix it and do it yourself. No smartphone nor Facebook posts. As far as that was concerned, Mom did not want a smartphone and never used a computer. Mom was truly off the grid and took pride in that disconnect.

I can't seem to take half of a day away from my device without a sense of urgency or panic. What did I miss? Probably making a connection that is only in this moment of time. Only in the here and now. A very slow mode of connection, served with a simmering helping of love and affection. The time to just look into another's eyes. Precious time. Which is truly not our friend.

I don't want to get lost in anything except my relationships that grow deeper and flourish.

If time could only stand still I would have been able to slow down all of this. What my mom would live through was a brief synopsis in comparison of what I thought the normal progression of dementia. The lack of restful nights when Mom was sundowning, sometimes only sleeping an hour or two at most, probably gave us time to have some really insightful discussions. She gabbed incessantly while I watched the sunset and the sunrise slowly crown at dawn without a wink. Soon, robust conversations would become trailing off minute thoughts. Hints of fears of being vulnerable breaking through to even more confusion, less gains, more losses. A few words here or there, or periods of gibberish. Anger and rebellion. It was telling and I felt a fear in my heart for the life to come. All that uncertainty welled up. The narrowing of her once self- assured movements into tiny shuffling of feet across the hardwoods.

The radius between what is and what was lengthens. There is a short distance between the tears I have left to cry.

She deserves my voice to be hers. She always used hers for me. They both did. My parents were incredible to me. The reason for my being exactly who I am is solely dependent on the proportion of love they poured into me. I straighten my face, wiped the tears, and covered my cries. In my head I hear "I'm in this to win this, Mom. Let's do this together."

How I was so unprepared for life when the parent will need the child, and the child will cry for the parent to return to them. "Just be you again and let me have another talk with you. I still need you. Please come back..." The words echo in a cavernous space where a routine surgery became a song of endless sorrow. The words grow in intensity, but she cannot hear them anymore. "Please come back. I'm not done learning yet. I love you so much." Her head angles downward as she pushes the walker along the floor back and forth. Back and forth.

The headlights of a fast moving train were coming towards us in the darkness. My son only wanted her to be OK and better. There is a beauty in being naive to harsh realities. He only knew that we improve with doctors and visits to hospitals or short stints in rehab. That medicine means we all get healthy and well. That in a logical sequence of events, we will make a climb to a state of betterment. Healing is on the horizon along with a new life, new adventures, another chance. They both deserve that abundance of hope, that there is something we are working towards. A bounty of goodness awaits, brimming with more than what you'd expect from the cards that landed upon your table. The meek of heart, body, mind, and the less fortunate are who we protect.

Their win will be our win if there is a win to be had. Sometimes the victory is just in day to day existences. This is a small victory. I always thought the small victories will save you because this is where you retain balance and see the power of hope. It is your storehouse for the future.

In her final month and a half, I would make the living room space our Ground Zero hospital central. To make my way through the darkness, I had to also carry her with me. Her hopes and fears were mine. How much I wanted her grandchildren to witness this evolution from weakness to strength. But this would not be our bounce back nor comeback story. Mom asked if her grandson would also get personal assistance and care from hospice, that this is the only way she'd want it. I had to tell her yes. And she would be okay if her grandchild had care, too. Then she is protecting and nurturing him and helping me. This is how caring she was deep down. That would make it more bearable. And when the eyes of others look downward, casting doubt for your loved ones future, there is emptiness everywhere. Grief comes when no one can boldly say that hope remains. All she needed was someone to say "We still believe". Awaiting a sign that we are moving ahead. A smoke signal. Maybe a faint hint of illumination. The spirit is willing, but the flesh may not be.

I wanted to push that little engine all the way up the mountain. But it puttered and skidded, bumping into every obstacle in sight. Being a caregiver to a person with Alzheimer's or any other terminal illness is an acceptance of an eventual sad day. My day came in late October. I had determined that I would take that day as mine to stay awake around the clock. When night fell, I briefly turned my back to take a seat at my table to reminisce on the goodness of my parents. There was nothing to prepare me for not being able to save the day. To be my mom's hero. Was that the only reason why I was there all along? Who was I to believe that only hope and this innate audacious determination to fix it would keep my mother alive? Running on empty and fumes, but knowing that if I kept her hand in mine that somehow we would find answers. We'd realize the gift of more time.

I guess that in retrospect, perhaps this is who I am authentically. Bare and open to the world, I am okay with being this woman I found over the course of immense grief and loss. I give of myself selflessly. Even if I may have to stand alone in my belief. Or alone with you. At least then you know I am by your side. The world needs courageous warriors to encourage others to stay this often lonely or desolate course. This ordeal proved to me that I am the kind of person that runs into the fire, searches for signs of life, and grabs for your fragile hand. Whether I end up in a puddle or river of my own tears is never the dialogue. Which may be inevitable when the inevitability of heartbreak is the struggle for the try. That 11th hour attempt to undo or redo the broken pieces. Mainly to Super Glue the worst of life's events together long enough to see that faint smile cross your lips.

To know that you made me a better human than before and I replaced frowns with upside down frowns. The work of a mere mortal could just as well be their masterpiece. Life is a gift. My family offered me a duty to care and be a caregiver. To hold life as closely in my hands as any human could have done. This was my moment and perhaps part of my destiny.

My mother and my son have given me someone to fight tenaciously for. And something to fiercely believe in. Another tomorrow is never promised, but the victory was in all you struggled in. Your character in the face of fear isn't only witnessed by you, but all those who will hear and tell your story. In her memory, I write this and offer my story to anyone who is walking in a path of little to no certainty. We are penning a life story with each tiny victory, each misstep. Because who knows what the right path really is? Fortunately, there was never a guide written for this world. So, we bravely write our own. They, as well as my adoring father, have been my stars, my luminaries. Lighting a pathway for me to live authentically unapologetic in my need to repair and mend problems, circumstances, and people.