and still, she persists…

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And still, she persists…

The buzzing of the alarm is heard off in the distance. Her children’s eyes grow large with worry.

“Hurry Mom, dad needs you!”

She rushes into the bedroom, grabbing the silicone wedge off the nightstand. As gently as possible, she pries his teeth open and off of his tongue. All the while, his eyes are burning in anger at her. She didn’t come fast enough. His face doesn’t move, but it doesn’t need to. She can see his frustration in his eyes.

After she fluffs his pillows and readjusts his body, seeing to all of his needs, she can hear the children in the kitchen.
Moving from one fire to another, she rushes out the door to see what the next emergency is.

And still, she persists…

They are crying. Looking up at her with tear-stained cheeks. They want to understand why their beloved pet had to die. Her heart breaks. Not because the cat was killed on the road in front of their house, but because she knows that soon, these faces will be searching for an answer as to why their father had to die. Will she have the right words or be able to comfort them when that time comes?

And still, she persists…

Her eyes are bloodshot. Its after 2 am and finally, the dishes are put away. Her husband is sleeping, the children are tucked in and safe. She remembers that the only food she has had all day are the few bites from a package of crackers her baby had nibbled on, and the constant flow of Zipp Fizz, the only source of caffeine that keeps her moving.

She pours herself a bowl of cereal. Stifling a yawn. Her head heavy with exhaustion. She can’t remember when the last time was that she showered. She contemplates skipping her only meal of the day to take a hot shower, but her stomach is growling, her head is pounding, and she needs to lay down soon. The kids will need her in the morning as they get ready for school. Four blessed hours of sleep, if she is lucky.

And still, she persists…

Pulling and twisting his lifeless and limp body, she maneuvers him to an upright position. Trying hard to avoid pulling the hose that is attached to the mask, that is attached to his face; she uses all of her strength to pull him up and over to the wheelchair. The bedroom is small. So little room to guide the chair around. The bathroom, even smaller and more difficult.

The sweat beads along her brow.

She grunts, using her back, her arms and her legs to pick him up and place him on the toilet. Trying to maintain his dignity, she wrestles with his body, and the damnable hose. Wishing he could remove it for just a moment but knowing that his body no longer takes in air without its assistance. Trying to find a different solution, but knowing he will simply refuse her suggestions, she lifts once again, and repeats the entire process.

And still, she persists…

The voice is monotonous, but it doesn’t matter. She knows him well enough to know that he is angry. He is always angry. He hates this disease. He hates how he feels cheated. He wanted to do so much in this lifetime. It isn’t fair.
He takes out his anger on her. He uses words like a killer wields a knife. Piercing her heart with razor sharp words. He places the blame on her. He points his frustrations out on her. As if she were the reason he was diagnosed with ALS. As if it is her fault that the doctors never took his symptoms seriously. As if it were her responsibility to keep him happy and healthy, and she has failed him once again.

And still, she persists…

Was there a time when they were happy? She can’t seem to recall anymore. She can recall their wedding. She married a man, who was still so much a child in his inexperience, and his desires. Wanting to please him, she put her dreams on hold. Knowing that to make a marriage work, there had to be sacrifices that needed to be made. She never saw that she was always the one making the adjustments, in order to keep the peace, and because she loved him with every fiber of her being. Now, there is anger. She looks for the happy memories. The flashes of happiness, Traveling and exploring, his excitement with every new toy: a gun, a four-wheeler, or even the snowmobile. He was happy when he was out doing things…anything. Now, he lays in his bed, staring at a screen, pushing the world further and further away. She tries to show her love, with a caress, a smile. But still, he pushes her away. Every day, she tries again. Hoping this day will be different, and he will see how much she loves him, regardless of the disease that has ravaged his body…and stolen his happiness.

And still, she persists…

ALS has taken so much from them both, and yet she still searches for joy and gratitude in her day-to-day routine. She is exhausted but smiles when her children are excited in their adventures and discoveries. Her children are happy, and even though their father is bed-ridden, she continues to create a lifetime of happy memories. She manages to keep them occupied and distracted from the world that is just down the hallway from them. She hugs their hurts and washes away their fears. She carries a heavy load, but you will never hear her complain.
Her smile would break your heart if you understood what kind of sorrow and sadness she hides from the world.
Someday, she knows her life will look different. Someday, she will no longer be a caregiver to a man who cannot find beauty in his small world. She tries to encourage him and to remind him that there is still joy to be found, but he pushes her away.

And still, she persists…

Someday soon, she will have to look for a new routine, and find new dreams to dream. Hard work doesn’t scare her. In fact, she looks forward to the day when she can leave the walls of the house she is trapped in, and to have goals and aspirations once again. She catches herself feeling the familiar twang of guilt when she imagines the life she might have after…She stops herself just short of going too far in her daydreaming…knowing what that means for her husband.

And still, she persists…

She is the strongest person I have ever met. Her heart is pure, and she is beautiful, both inside and out. She doesn’t realize her strength, and she can’t see her potential. But someday, she will look back on these moments and realize that she accomplished more than most people will in a lifetime.

Long after the ALS memories and painful struggles associated with the disease have subsided…only then will she see what I have seen all along. No matter what life throws her way, I know that she will continue to do remarkable things. Her children will one day understand her sacrifices, and they too, will stand in awe of the strength of their incredible mother.

And hopefully one day, when they are grown and living lives of their own, they will know their own strength because of one woman who continued to push and fight for them, regardless of the incredible task set before her. Until then, she continues to get up, weary and almost to the breaking point.

And still, she persists…

 Matthew Wild

 

4 years…

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The pounding at the door had some strange sense of urgency to it. I glance at the caregiver, my eyebrow raised.

I wasn’t expecting anyone else for the day.

“Tell them I died and to go away!”

I hear voices at the door.  She yells for me to come to the door.  I groan. I can’t be seen like this!

I glance down and yell out.

“No!”

I am wearing an over-sized shirt, one of Matthew’s old ones. It is at least five sizes too big.  I haven’t showered or even brushed my teeth yet and the morning is almost over. My face is bare, my hair piled high on top of my head.

I don’t want anyone else to see me like this. It’s bad enough that the caregiver, the occupational therapist, the carpooling kids, the crossing guards, and who knows who else has had to see me today in total disarray…

I am slightly annoyed at this minor inconvenience.

Seriously, who could it be?

The Occupational therapist was already in the bedroom, performing Matthew’s “exercises” for the day, and physical therapy and massage therapy were already done for the week. The lady who checks the machine isn’t due for another week.

No one else ever stops by during the day.

I hear the door close, and footsteps walking down the hallway, more like elephants stomping and the caregiver telling me I need to see this.

I am hiding in the kitchen.

The footsteps draw closer.

I see the giant bouquet before I see anything else.

A giant bouquet of roses.

Eighteen of them to be exact!

Long stem roses, white and soft pink, arranged in a large vase, carried by a wisp of a girl.  The roses must have weighed almost as much as her.

A smile spreads across my face.

She sets the roses on the table, along with two small bags.  The names of my two youngest children are written on the bags.

Again, I can’t stop smiling.

I tell the girl thank you and watch as she stomps out. (for such a small thing, she sure is loud!)

And I shake my head..once again amazed at my husband and his thoughtfulness….and lack of ability to follow directions.

I walk into the bedroom, that same smile still spread on my face to find him, like a small, anxious boy, ready to burst.

“I thought we agreed not to exchange gifts this year, since we are going to dinner?” My eyebrow is raised again. I am trying to look stern, but it isn’t working.

“That rule was made after this was arranged.  And there are no take backs!” His eyes are twinkling.

I shake my head, lean my arms against his wheelchair and give him an eskimo kiss.

“What did you get for P and K?”

“Well, it’s their anniversary too!”

And just like that…I remember why I love this man.

He is compassionate, kind and caring.  He is thoughtful and sweet and generous beyond anything I have ever seen.  He is also, by far, the most romantic man I have ever met in my life. He knows me better than I know myself. He is my biggest fan, and for some strange reason he loves me.

And he loves my children as much as I do…

 

Happy Anniversary, babe!

dinnertime…

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It’s my favorite part of the day.

The evening is winding down.  Books are scattered across the table as my studious child is bent over a book, brow furrowed in concentration. The other one is running in and out, doors slamming, as he tries to sneak past me once again. The dogs are watching, waiting for a small morsel to drop. I am laughing as I try swatting at my son to stay out of the pantry. He rushes just out of reach, a triumphant smile across his face.

It’s almost time for dinner.

The sound of onions and mushrooms sautéing in the pan. Fluid motions of chopping, the rhythmic sound of the knife slicing and dicing. With the flick of a wrist, the food is absorbing the heat and sizzle and beginning to meld into a meal. The smells are wafting into the house, and the sounds of laughter are mingling with the sounds of footsteps. My children are gathering around the table. Dinner is almost ready.

Matthew sits patiently, quietly. His chair turned towards me.  He loves to watch me cook. I know this about him.

Even on days when I barely have the energy to move, if my children are gathered around the table and I am cooking, I am in my happy place.

It was a subtle sound.  I didn’t even hear it at first.

As I am setting the table, my back is turned as I am dishing up pasta into a serving bowl.  My focus on gathering everything to take to the table.

There it is again.

I glance up, twisting my neck to see behind me.

Matthew’s face is red. His eyes are bulging.

He is sputtering.

Kaden and Peyton’s eyes widen.

My son jumps up.

Matt, are you ok?”  I can hear the panic in his little voice.

I set everything in my arms down, but Kaden is already rushing off towards the bedroom. Peyton is standing up out of her chair, unsure of what she can do to help.  I am walking quickly towards the bedroom, ready to grab the machine if Kaden is struggling.

Matthews face has gone from red to purple. He is trying to cough, but there is no sound.  A small wheezing gasp is all that can be heard.

Kaden comes running towards me, cough assist in hand. I can see the look of terror on his face as he glances from Matthew to me.

I smile, trying to reassure him that Matthew will be fine.

I press the “on” button, balancing the machine against my thigh, as I juggle the hose and mouthpiece.  It is taking forever to switch on.  I slowly count to three out loud. More for Matthew’s sake, to help him to remain calm and that he will be able to breathe again soon, than for myself.

One….Two…Three

Finally, the “swoosh” sound begins, indicating it is ready.

Matthew leans towards me, pushing his face into the plastic covering that encompasses his nose and mouth. The familiar sound as the machine forces the air in…then out fills the air.

After several deep breathes, Matthew leans back into his chair, relief across his features.  His face is still red. Tears streaming down his cheeks.  Snot dripping from his nose.

I set the machine down, grab a rag and begin to clean him.

This is automatic.  This is not the first time he has choked on his own spit….and it will not be the last.

I glance at my children, frozen in place. I give Peyton an encouraging glance and ask her to keep telling me about her day. Looks of terror on their little faces slowly dissipate and I can see their chest begin to rise.  They are only now realizing that they were holding their breathe.

And just like that, life returns to normal.

Our normal.

“So” I say, “What was the best part of your day?”

Going home…

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I know this road like the back of my hand. I know the curves and gentle slopes like a lover knows the curve of a cheekbone. I know where every pothole is. The damnable things that return year after year, no matter how often they grade, fill or sand that road. I know where all the jagged edges are.
 
There is a bridge, and on a hot summer day, you can always find a few cars parked along the edge, as daredevils attempt to scale the cliff’s edge and jump into the wickedly cold mountain water. I have jumped from the highest point and splashed into icy water. I would try to act tough, but each and every time, the air would scream out of my lungs from the shock of the cold against my body. It has been at least twenty years since I have jumped into that creek.
 
I continue driving, noticing a new fence along the way. Someone is building a shop along their property, and I shake my head, still annoyed that someone had the audacity to build a house there in the first place.
 
The sound of gravel crunching under my tires as I turn that last corner onto that dirt road travels above the chatter of my kids in the back seat. The dogs are looking out the winder, their noses twitching with the new scents yet to be discovered.
 
I gently touch my brakes to slow down, not wanting to kick up dust, and to avoid even more bumps along the way. I can miss every rut with my eyes closed and it feels familiar once again.
My face is smiling. The wild grasses are swaying, as if they are waving to me. The flowers, small and frail, are peeking through, timid and shy. The gentle rocks are still undisturbed; strong and steady. Their pointed overhang, with a thick moss hanging over, provide a bit of cover and an easy escape for the deer who are perturbed by my unexpected arrival.
 
As I get closer to the house, my heart beats excitedly!
 
I am home!
 
Never again.
 
I will never look for excuses not to come back. I will never lose track of time again, and I will remember how much I need this place as much as it needs me.
 
At least, that is what I tell myself.
 
It has been at least five years since I have come for a visit.
 
I had forgotten the beauty.
 
The smell of evergreens, and sweet clean air. The mountains, so close, its as if they are hugging you in a warm embrace. The river calls to me to come and sit for a while.
 
And so, I do.
 
It’s 3 o’clock.
 
That means its “happy hour” down at the river. We have unpacked and it’s a warm day. I know where I can go to cool off.
I follow the trail that leads down to the water’s edge. The tall grass is overgrown all around, but a small trail is carved along a pathway that leads from the house to the rivers edge. Two tall pine trees serve as shade.
He has added a bit to the gazebo. Moved the picnic table closer too.
But the chairs are still propped, facing the town.
I sit down, breathing deeply.
I sigh…
I am tired.
They look at me, a bit of sorrow, a bit of pity and a small smile in their eyes. My children are yanking their clothes off, ready to jump off the dock and into the river below. The dogs, their tails wagging, are smiling, glad to be free of leashes or restraints.
 
This place is freedom. It is solitude. It is peaceful.
 
I hadn’t realized how much I was holding in until that moment.
 
So I sip my drink, and breathe.
 
I let the worries, and the stress: the disappointments and the angst fall off my shoulders. I can pick it up when I leave. After all, it never goes too far. But for now, for these four days, I want…no I need to simply be. I need to have no one ask me for anything, or to need me for anything. I need to soak in the beauty all around me.
 
The splashing and dogs barking make me smile.
 
My children have been playing on this river bank their entire lives. I am happy that they will have childhood memories of this place.
 
This place will have a far different meaning for my children than it had for me in the past, but I am thankful all the same.
 
The sound of a chainsaw across the river draws our gaze upwards.
 
A crane, with a long blue arm reaching high, a bucket holding a man inside, is stretched out to a large leafy elm tree. The chainsaw roars and screeches, as the man wields his weapon against the wise old sage. It is the last of its kind. A tree planted more than one hundred years ago by the looks of it.
We all sit and stare as limb after limb drops down to the ground below.
 
The kids are still jumping and laughing, oblivious to the atrocity happening across the river. The three of us simply sit, with no words to be said.
 
Finally, he growls about the stupidity of cutting down the majestic beauty. It is obvious the tree is not being pruned but destroyed.
 
He shakes his head.
 
I wonder aloud at why they would cut down a perfectly healthy tree like that. Roots? Disease?
 
We have no answers.
 
After our drinks, its time for dinner.
 
The kids want to walk into town to visit with their grandparents, and I am glad. They all need that time together, and I need time alone. I am even more glad that there is now a bridge that connects those who live on one side of town to the other, with a quick stroll. That means I don’t have to drive them around and into town the long way.
 
Memories flood my mind as I find myself strolling along the same path later that evening. Walking with no set destination in mind, I put one foot in front of the other. Listening to nothing but the sound of my breathing and footfalls along the dirt road.
 
I moved to this house when I was fourteen years old. Can you imagine how incredibly angry I was? Moving again, and this time to a town that didn’t even have one stop light! What a horrible idea! I didn’t want to be there, and I am sure I let them know my frustration at being cooped up in a tiny house, so far outside of town, and not knowing anyone!
 
Yet, this house. It was the first place I would feel safe.
 
You can imagine my frustration at having finally started to settle in, only to be told we were moving again. I put my foot down. Hard! I begged to be able to stay. Just four years. That was all I would need: please could we stay?
 
A decision that had both good and bad consequences.
 
They let me stay, but they left. They would go to work for weeks upon weeks, leaving me alone to navigate being a teenager in a small town.
 
Let’s just say, I didn’t make the wisest of choices…
 
I keep walking a bit further along, remembering the parties, the sneaking out on late nights. Kissing boys and hearing the gossip the next day. Planning bonfires or skinny dipping, yet the girls were always too shy to take off all the clothes, and the boys were too shy to even jump in! I remember playing on the water in the summer. I would sometimes sneak out, just to take a wobbly pontoon boat up the river, just so I could float back down and stare at the stars all by myself. If that seemed dangerous or risky, it certainly had never crossed my mind.
 
I remember my mother and the guy that I would later call “dad” when describing him to other people because the telling the entire story would take too long, they broke apart for the last time. Still, I found my way back to that house.
 
Then, instead of sneaking out, I would find my self constantly sneaking back in. A house that would become a summer getaway would be a place I found solace for years to come. I moved back into that house five years later when I eloped with a man for no real reason other than he looked at me and said, “Hey, the Hitching Post is back there, do you wanna?” He seemed pretty nice after a few weeks, so why not?
 
Lack of jobs, lack of education, and desperately needing to set out on our own path, we left, only to return once again, this time with a baby in my belly.
 
But that town was still too small, and I was far too restless to stay there. I pushed farther and farther away. Yet, every year, I would feel the calling to come home. To breathe the mountain air, to feel the soft release, as I sink into that chair and watch the water flow softly by.
 
I would bring my babies there. I would swim with them,
teaching them about the current. While other boaters stay far away from this part of the river, I teach them not to be scared of the waters currents, or the rope holding us back from going over the falls not too far away, but to trust it and know it will pull you to safety if you let it. Don’t fight it, but to swim with it.
 
Years later, I would decide to leave my first husband on that river bank. We held hands, crying, as we said our goodbyes, and after 17 years of marriage, that part of my life ended. It stung to go back and feel so many memories that included him.
 
Maybe that is why I stayed away so long?
 
Or maybe it is because shortly after one part of my life ended, another part began.
ALS.
 
And because of that, I stopped trying to find solitude and peace in places and started looking for it in myself. Or maybe because I felt shame and didn’t want to come home to more criticism. I felt enough disappointment; I certainly didn’t need to feel it from others as well.
 
That first night, I found myself walking to one of my favorite spots. I used to go and sit next to the water as it rushed down the gates of the dam. Those trails are grown over now, and so instead I went to another spot. Still close by, where that cold water from that creek above meets the water from the river.
I sit and stared at the stars. I let the cool night air kiss my skin and for just a while, I forgot about everything else but being in that moment.
The sound of the water rushing by, as it joined into the river. The Milky Way, something I had forgotten even existed, was staring down at me. We seem to recall each other. I walk home, a smile on my face. My body releasing all the tension and letting go.
 
I spent the next two days sleeping in, riding in boats and playing with my children in the water, showing them some of the sweet spots of the river. My dad and I shake our heads at all the houses along the riverbanks. He shakes his head at the crazy housing prices, and I shake mine at all the change. Neither of us like change.
 
We would find ourselves sitting on the river’s edge each day around 3’oclock. Sipping our beer and sitting quietly; watching a giant blue crane across the river continuously rise up and down, getting to just the right angle. We can hear the screeching of a chainsaw as it hacked away at a beautiful piece of history.
 
I spent my nights looking at shooting stars and remembering. Remembering good and bad times, happy and sad.
Remembering how I couldn’t leave fast enough. How it was too slow, and too simple.
 
Now, I want more than anything to have simple once again.
It is day four.
 
I don’t want to go back to Idaho, but I must. I find myself stalling for more time.
 
This time, instead of rushing away, I try to find any excuse to stay. But I know I cannot. I watch, as the chainsaw cuts down the last limb. It has taken four days to chop the tree, leaving only the trunk left to saw down.
 
I nod and try to take a picture with my mind’s eye as the bald eagle flies overhead. A lone duck swims over towards the dock, but the dogs don’t understand that it doesn’t want to play. It quickly paddles away. Dragonflies swoop around, and the sound of the train horn begins whistling in the distance.
With another deep breath, and a sigh, I stand. I glance over my shoulder for one more glimpse of a sleepy little town. A town I had once hated and couldn’t leave fast enough. Yet now, all these years later, a town that I find myself gravitating towards more and more.
 
A place I once called home…and I expect, always will be.