I had to wait until today, after October shut down, to even begin to write this. My heart is so weary I thought about skipping it all together.
But, I can’t. I can’t roll up and put away two lives as if they never were and set them to the cobwebbed shadows of my memory. They were worth more than that.
A few years ago I wrote about my mother in an article called Moving the Puzzle Pieces. It was a bitterly cold December in Oregon when my mother hung so precariously between life and death duking it out in an Oregon hospital room. It was as if mom’s entire life were held in an indrawn breath of a decision and she was being held in some invisible hands that we could not see.
There was a deliberation going on. In the middle of it mom lay there in the waiting weak as a kitten but still holding on.
My mother did survive that and I had many good visits with her. I saw her smiling and enjoying immensely those visits! Once when I did a month in Seattle for speech therapy for Nicholas she and dad managed to travel there to see me! We talked on the phone often.
Even though mom was a quadriplegic with fragile health cycling in and out of an endless rotation of bladder and kidney infections and the constant threat of getting new wounds or infections or the tedious careful treating of sometimes continuously active tiny pressure sores that cropped up on places like her heels, mom fought. In her way, mom thrived for the last three years. She even traveled to Tahoe to see the Beach Boys!
In all that time my father was by her side. He lived in the parking lots of hospitals and nursing homes for fourteen months so that he could be with her and turn her on a regular basis so that she wouldn’t be lost in the shuffle and get another pressure sore like the fist-sized ones she’d survived that showed a wide expanse of her spine.
After she was released she alternated between home and periodic short hospital stays for twenty months, and dad took sole care of her.
I am confident in saying that to her and to dad all that struggle was worth it. The time she gained was worth every moment of effort even with the magnificent weight of keeping up on her care at home. In my case, her last three years are condensed down to a few really good long visits out there on her gentle river and phone calls where I heard her speak.
In the simplest terms and condensed down, for three years what I heard was that she was proud of me and that she enjoyed my company and that her fight was still worth it!
On October eleventh mom hadn’t been feeling well or eating much for a while. Dad took her to the ER where the doctor on staff was un-impressed and offered to send her home or keep her, it was up to dad. Dad needing a night’s sleep asked them to hold her there. On Saturday things still seemed stable enough there was absolutely no thought by either of them that the end was anywhere near.
They even discussed coming to my home after Christmas, a trip that had not seemed possible until just recently. By Sunday morning as dad returned in the morning my mother had been put back on dialysis, was intubated, and taken to intensive care.
On Monday, October fourteenth just after dad arrived and right after shift change just as the nurse was cleaning my mother up in the usual morning pattern my mother coded and her heart beat for the very last time. She died of a massive sepsis infection that nobody even saw coming.
After forty-eight years of marriage and the last three and a half years of devoted care my father became a widower and I became a motherless adult child. In the stopping of one heartbeat, so many people were cast quite suddenly adrift.
The wind that swept across my soul was vast and empty and howling and complete as memories tickled up and faded in and out of focus on some grand swirling whim and then were picked up and whisked away into the background before I could do more than pluck at them and get a quick glance. The wind screamed. The dust stung. I stood there as the tall grasses whipped a vortex around my feet.
And I was wrapped in the enormity of the very sudden total silence of my beautiful, strong, intelligent mother’s voice. I was stunned that it would never be untrue again.
I booked my trip to visit my father the weekend that fell ten days later and made ready to go. I was stuck in that horrible position of what to do next. I had a friend flying in from Washington three days after mom passed who had become a very deep and true necessary spirit in my life over the years in my Autism groups. Somehow over the last three years, we have managed to see each other several times a year.
She had helped me get speech therapy for my son and she shared all of her experience, strength, and hope with me. But, this trip was to be an all stops out visit! It had been planned and selfishly as gleefully we had perused glossy brochures.
We joked titteringly that we were great moms for letting our boys go at all! We were going to Disneyland for five days! We were going to do the Disneyland private Halloween Parade and Party. We were giddy like children.
I considered carefully what to do. Though my gleeful and childlike anticipation was not entirely in it anymore there were logistics and costs and itineraries to consider. I pondered it all very carefully. My mother would have wanted me to go for a few days at least. One of the things she was proud about was how I’d made connections in the Autism world.
So very quietly I kept my plans at least for a few days, I thought—I picked my friend up from the airport and we arrived at Disneyland and began parts of our adventure. There was nothing else to do at the moment for mom. So even though somewhat subdued and frazzled and with a jagged shafting splinter in my spirit I set about keeping at least one thing right in a changed world.
I had no idea of the horrendous tragedy that would unfold at home in my absence yet. Wednesday was passed in a blissy sort of quiet reflection. Mom was on my heart and in my thoughts. My friend was good enough to hear me out and we just meandered our way through the park.
On Thursday October seventeenth we had done a morning and afternoon at the park and my friend had taken the boys to the pool so that I could spend a few moments contacting more relatives about mom’s memorial and firm up more plans.
My phone rang. It was my mother-in-law. Something in her voice alerted me immediately to something being desperate, life-altering wrong. I don’t even remember what she said but I immediately asked her “What’s wrong?” she told me “You need to calm down.”
The lights on all of my good sense went out of the window. I bolted out of my chair and stood stiff with every hair on my body raised. I began whimpering and then nearly shouting “What’s wrong! What’s wrong! What’s wrong?! Please, tell me what is wrong?!” She couldn’t get a word in edgewise as my frantic voice drowned out everything. I think I was seeking to drown out the dreadful news I sensed was coming.
Finally, she simply began saying “Bella. Bella. Bella” until I stopped speaking. I paused and mentally shook myself and stilled my frantic brain enough to ask what had happened. My mother-in-law said “There’s been a terrible accident and I think that Bella has died. Her mother hit her in our driveway and it looked very bad. I am calling you because Bella’s mother is your closest friend and she will need you now.”
My mind snapped. In one indrawn breath, I felt Bella’s passing as a shivering ripple throughout my body. My brain screamed in a silent shrill electrical firestorm as spasms overtook my chest and squeezed my breath nearly out of my body completely. I stood there while a stunning pain gripped my heart as the heartbreak unlike any other I have ever experienced broke across my chest.
I actually clutched my chest in the area over my heart to try to stop the pieces from scattering away. I closed my eyes and a display of sorrow appeared lit bright red and orange and violet lights played on my eyelids in starbursts of kinetic misfiring energy. I was lost for a moment in the simultaneous exquisite dual explosion in my both my head and heart.
I knew instantly that even if she had not been pronounced yet, that she was gone. A complete icy calm came over me all at once the screaming inside stopped. Sudden and immense was the brittle glassy cool calmness. I told her that I needed to speak to my husband.
The tragedy unfolded this way—as some of you know I have been doing Insanity and T-25 every day with great success. My partners were my husband and my friend, Bella’s mother. Though I had been away at Disney I had brought one disc and had encouraged my friend and husband to continue until I returned. So Bella’s mom had been at my house with her children like she’d done a zillion times before, doing just that.
As she left that day the children ran as usual to the point well off of our long narrow driveway to the horse corral where they had waited literally a hundred times before. But, this time as their mother backed down the long drive, for whatever reason those kids deviated from the plan and tried to hitch a ride on the bumper. Thinking better of it, Bella jumped off of the big van where nobody could be seen and was struck.
My husband tried to resuscitate and would not stop until paramedics arrived but Bella never registered life again. Paramedics came and brought her to the medical unit at the fire station and they tried harder. Life flight came and they continued efforts on the little darling child with the sweet little heart shaped chin and the feisty spirit. Children’s hospital tried too. Yet she was pronounced dead that evening.
I sat in my hotel near Disneyland in shock for several moments. My husband kept saying “Call somebody! Who can you call!?” I have tons of numbers of friends we share in common but my brain lightly held up one name or another and then let it wisp away as I flipped through the rolodex in my mind until I asked myself “Who would you want there? Who would have the gentle energy you would want? Who exemplifies love in every bone of their body, even in the way they move?” I knew the answer and made the call.
On the phone I could not even speak. Though I’d felt calm in the moments just before as I loosened my tongue to actually speak I sagged against a wall and wheezed into the phone. What came out was “I need your help. Go to my home. Our friend has had an accident and she will need you, please go there for me” but it took several breathless sobbing efforts to get it out.
Once off the phone my body quieted again. I went down to the pool and tried to tell my Washington friend what had happened. Again when the words had to form I lost composure and I leaned against her sobbing and shaking like a leaf, trying to tell her.
It was decided I return home but midway I decided to divert to the Children’s hospital. My friend from Washington unfamiliar with this state drove me because I sat in the front passenger seat alternating between cold and stiff frozen shock and hot railing tears and bewilderment. It was she who drove me to the hospital and then took my son home for me.
I arrived there just in time to embrace that brisk calmness and to stride over and put my arms around my friend over the shrieking keening of another family member’s grief. I was able to put my eyes to my friend’s and lock them there and to tell her to “Look at me! When people get lost in their grief and say things they don’t mean—-you look at me. Do you hear me? Look at me”. I took her down the hallway and we cleaned her up. Bella’s final moments were everywhere on my dear friend’s skin and clothes.
I was there for the medical examiner and prayer in the chapel with the hospital chaplain. During that prayer an interesting event occurred—a bird chirped every time the chaplain spoke. When he quieted so did the bird. Everyone looked around waiting for someone to quiet their cell phone or whatever but nobody moved. The bird was Bella. I am sure.
I don’t care what answers in the mundane can be found, I know it was Bella anyway. It was just like her. Twirling there sticking the tip of her little tongue out at us all. Smiling. Letting us know she was okay.
The days that have followed are a blur. I was not graceful. I did not sleep. I did not eat. I stared out and moved on auto pilot with dry wide eyes. My Washington friend at an immense personal cost to herself in a debt I cannot repay returned to Disneyland with my son who did not need to be here for the tragedy that befell his closest and most long-term friend.
She took my Apraxic and nearly unintelligible Autistic boy with only an Ipad with Proloquo2go and experience she had gained from traveling with us and a few hasty instructions from me. She took my child along with her significantly impacted older boy.
The two boys together are like a delightful mix of screechy popcorn and shook up–Bubble-Up giggle fits and goat herding, we render stores and restaurants and lines at Disney into stunned silence as people try to figure us out, guards cannot be dropped and we as moms are busy and popping all of the time when we travel together.
That’s with us both along, with only one of us there—well I can’t imagine how she did it at all. Another special needs mom and dear friend also set out to be there with her special needs son in tow. Each sent pictures of my son often so I could see him healthy and whole as I moved about what I needed to do. These friends made it possible to keep my promise to my friend.
I was there often so she could look at me and know she was loved. I moved by the numb route. But, I was there for my friend reminding her to “Stay with me”.
After the candlelight vigil for the beautiful little girl who I’d first met in the hospital room after her birth, I did have to fly out to be with my mother, even if it was just to say goodbye. The sadness on the river was intensified. I feel some of my grief was split and unfocused and I don’t think I was as present as I might have been.
I felt I may have cheated my father and maybe my mother somewhat, but I knew there was no help for it. I did my best. But, often in the night I’d wake with my heart pounding and think “Holy shit! This cannot be true! Both of them?” and yet it was.
We picked up mom’s ashes in an Oregon myrtle wood box. We gathered the family and watched visions of her life play out in a slide show set to bagpipe music. My heart squeezed at the sight of my beautiful mother who had after all once been so healthy and full of life. My spirit leaned back and forth between Bella and mom.
Bella’s memorial was held back home the day before mom’s. I watched our beautiful community and our friends stepping up to hold their place beside our friend and help her through. I was proud of all of us. Through it all there was no question of where I needed to be. It was with dad and my mom, of course. That didn’t make it feel any easier, it was simply the truth.
My friend, she was uplifted and supported and held. I was at peace.
Then it was time to return home and see what wreckage could be shored. What lessons could be learned? What purpose could be made? If any, if any could be found at all.
Here’s what I’ve come up with so far. For me, it is to be present in my life when those I love are alive. Be a daughter, wife, a friend—a person who can be counted on. Be loyal! Be the face of love for another. Be a solid rock in the life of the people I love. If I love somebody I am to say it! If I am thinking of a person I need to contact them and tell them.
I need to be quicker and more willing to forgive people of their imperfections even for what I perceive to be slapdash or meat-fisted emotional behaviors directed my way! All people and doubly so, the people I love. I need to ask forgiveness for my own defects of character and for when I have been clumsy in my walk or have been rough with another.
I need to ask and answer the very scary questions out loud so that no doubt can live in my head. I need to ask for help and delegate or to say “No” to tasks that take up energy or time that steals from my family and friends. I need to pay the things given to me back out and forward into the world.
I want to be the person whose name runs across a mind when a person thinks of who on their list is the face of loyalty and love. I need to find the actions that keep meaning in these two beautiful lives that October burned out. I need to find the purpose deep in the still-smoldering bright ashes of the burnt out embers of this October.
I have a long way to go and a long road to travel. I am not perfect and I drop the ball. I am not graceful. Sometimes I am chickenshit and weak and wobbly. I also know that this journey has only just begun. Not everything has yet even begun to unfold. There is a lot of internal reckoning yet to make. I need to be as patient with myself as my resolve is to be with others.
But, for now, I am satisfied with the belief that love is what matters. Love to those you’ve chosen to be permanent and inseparable to your core. I want to be the face of love and let everything else wash away because in the end it does anyway with or without my permission.
In end the only things that have mattered permanently to me over my forty years are not the battles, oh I’ve engaged in those fights, but they are not what sticks when I look back. What remains constant in my life throughout are the feelings good or bad, heightened and flaming or low light and sweet.
They lick to mind like fiery tendrils of dukes up passion or they waltz in soft and dainty and full skirted and gliding sedately inside my heart.
But, the most passionate and impressionable reflections of the people I think back on are all intertwined with the pungency of sweetness and the passion and the thick and the solid and the determined and the unwavering—the way my heart has remained—and all the ways I have loved.
My friend and our children trick or treated together last night. We chose to go off the hill. Bella’s mom, dad, aunt, and her older brother dared my yard again. I offered to come pick her up, but she had said no. So it is that I stood at the kitchen window and watched for a long space of time.
I froze with my pulse jumping in my throat as I watched her headlights illuminate my driveway and sweep past the place that took Bella and my heart swelled even as the ache engulfed my throat. I felt the blood drain from my face and hands and slowly I felt it return. I blinked shut my wide-open eyes and opened them again. I moved outside to greet them.
I smiled as I stood and said how much I looked forward to their going with us! I moved into my own car next to theirs and heaved a sigh full of relief. Full of respect. Full of sorrow. Full of hope. Full of love. Full of– everything. I looked out my window and I smiled at them all again and together in a caravan of two vehicles we rolled down the drive past the spot on and away, nothing forgotten, but on our way to new memories too.
I had made a promise to Bella’s family that I would absorb the wound of the place where we lost her.
I said I could do that because in my mind and behind my eyes are a million and one other memories that POP and sing like flashbulbs in bright hot light and they start in a hospital room where I cried as I held her when she was just hours old.
There are Christmas projects, Easter egg hunts, Tuesday just because, haircuts, exercise, Halloween spooky dirt cakes, times they joined in on Neeko’s therapy, suck ass team football games, spilled puddings, scuffles and rambles and laughter—-there are infinitely more memories of her life here than there are of the heartbeats that surrounded her mere moments of tragedy here.
As to my mother—Oh, God, I will miss her. She was beautiful and smart and always on my side. Her greatest legacy to me, she shares with my dad. The greatest of her gifts to me is love. She and dad modeled love for me by sticking together so devotedly without ever even questioning if full time care and a hospital bed in the living room was what they wanted to do. It’s just what they did. Because that is the working form of love.
It is what is left behind even after the roses lose their bloom. It’s what carries you through the days when even your best-laid plans don’t turn out quite right, it’s what you lean on then.
It’s what you continue to do after the echoes of the champagne corks popping fade and the chocolates and cards and the cries of the babies stop coming, and it is there when the pitter-patter of little feet stomp away to their own lives.
It is what is left long after the words to the fights have been forgotten and long after the vacations have been saved up for and taken. It remains after the tragedies and triumphs have been shared, and well beyond when the dust has settled. And, it is what holds up long after the perfect hair and glowing secret knowing smile shared in the first blushing promise of “I do”.
Because if you choose to love somebody—if you choose to do it honorably, with integrity even when nobody else is looking, if you choose to do it very well, then loving on is the only choice you have. It is simply what you do.
Thank you, Cynthia, for sharing this brilliant, heartfelt piece!
I know how hard it must have been to choose the right words for such a charged and emotional subject.
Very brave, kudos.
I hope that writing what you have has helped you in some small way. Pain bottled up becomes far worse. Know that you are not alone, and that even those of us who do not know you, send you love and support. Be kind to yourself.