waiting…

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He held the phone up to his ear and waited.

The receptionist had asked him if he would mind holding. In fact, he did mind, but she gave no time for a reply before the swift click and soft music filled his ears.  He glanced down at the business card in his hand. The letters seemed foreign to him. Curved letters shaped into a name of a person he had never heard of, with a fancy title below it. A special kind of doctor, who had a special kind of business card.

Neurologist

His family physician had suggested he make the call. Unable to determine what was happening, but knowing that something was not quite right, it was time to look for answers from a specialist. As the irritating harp music continued its melody on the other end, he wondered how much longer he would have to wait.

Neurologist

He waited.

The music stopped, and a soft voice said,

“Thank you for holding, how can I help you?”

Six weeks.   It would take six weeks to be seen, and no, there was no one else who could see him any sooner.  This was his only option.

He waited.

He found himself sitting on an awkward and uncomfortable contraption that resembled a small bed, covered in tissue paper as he continued to stare down at his hands. The words were still echoing throughout his head, but somehow he couldn’t grasp what was being said to him.

A.L.S.

He waited.

He waited for the words to sink in, but somewhere deep inside he had already known.

He waited.

He waited for the sounds of his wife’s sobs to quiet. Slowly his head inched up, his eyes meeting those of the doctor. He tried not to flinch, knowing the familiar look of pity on the doctor’s face.

He waited for the realization to finally set in.

He was dying…

Weeks went by.

He waited.

On hold once again, he waited to talk to the insurance agent who would walk him through all the details of policies.  The policies he had been buying, the policies that would take affect in six months, and the policies that would take affect after he was gone.  The policies that he had paid for, but in fact, did him or his family absolutely no good.

He waited.

The lawyer made him wait in the lobby before ushering him in.  A final glance over his estate and final wishes, and a hand shake later, he walked out of the office. The bill would come in the mail.

He waited.

He waited to speak to the funeral director.

Walking in, trying to ignore the gravity of his situation, he made his choices.  No fancy frills or designs.  Simple and easy, much like how he had lived his life.

The months dragged on.

He checked all the boxes on his to-do list.

His final will, his funeral, his estate…all planned.

A final trip with the family to Disneyland.

He found himself waiting once again.

The children all smiles, as they held their babies and absorbed the chaos around them, he simply had no energy to try to keep up his grandchildren.  Instead, he sat as they went from one attraction to another.

He waited.

*********

Dying is not an easy feat.

As his body became weaker, and he relied more and more on those around him, waiting became a part of his days and routine. Months slowly passed by, and with it, he lost more and more ability to care for himself.

He waited to be showered.

He waited to be fed.

He waited for someone to scratch his back and blow his nose.

He waited to be cleaned up, often sitting in his own urine for hours.  He waited, his eyes filling with tears when he had to wait to be cleaned when his body would betray him.  The mess only making the situation that much more difficult to bear.

He waited.

He waited for the turning of the seasons. He waited for someone to come visit him, anyone to break up the monotony of his days.

He turned his head to glance out the window. It was summer, and while life had gone on around him, he was still waiting.

He found himself lost in his own thoughts.

How many times in his life did he wait?

He put off vacations to work longer and harder.

He put off dates with his wife, even after his career was well established and they had the extra income.

He put off retirement, too scared to consider slowing down. Now, as he lay there waiting, he found himself regretting so much.

There was nothing to do now but wait and think. His thoughts were often the only thing to keep him company throughout the days.

He felt tears of shame and guilt.

The years when his children were young played back like a movie in his mind. All the times he was too tired to throw the ball or play games.  He was too busy to have tea-time with his daughter. If he had only known how fast those years would fly by.

He recalled all the times he was late to their recitals, and games, and concerts, if he even showed at all.

They spent their lives waiting for him.

His wife, asking year after year for that honeymoon that they were unable to go on.  His shame at being poor and unable to provide fueling his desire to prove himself to her in the first years of their marriage, was then replaced with the need to stay as far away from the image of that poor man he feared he would become.

Several more months, and so many more losses along the way.  No time to adjust before another loss and another aspect of their lives were stolen by this disease.

His wife sat beside his hospital bed; her fingers curled around his hand. He wanted to apologize, but his mouth no longer formed the words. His breathe so faint and weak, she wouldn’t have heard the words anyway. He felt sadness for the missed time and opportunities. He felt ashamed at not making her more of a priority. He never should have put her on hold, assuming retirement would be when they would finally experience their life together. She had given him children, and created a home, and stayed by his side throughout their life, and he had made her wait.

It was time.

Everyone was now waiting on him. His children circled the bed. The grandchildren were long tucked into their own beds. They stood around his hospital bed, their soft sobs hidden behind tissues. The sun had set hours ago. Their voices in hushed tones.

He waited.

His breathe came in jagged gasps. His body heaving and struggling.

It was too late to worry about the past.  He hoped they would understand he had loved them and had lived his life for them. There was no more time.

If he had only known, maybe he could have shown them more.

He waited.

Listening as his body slowly stopped its fight for life.

He wanted so badly to hold them once more, to tell them how much he loved them.

But he was tired of waiting. He couldn’t be mad at the disease any longer.  He had no one to blame but himself. He had had time. And he had wasted it.

It was time to go.

He didn’t want them waiting on him any longer.

He let go.

a man and his dog…

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He was sitting against the wall, a blanket spread out beneath him. His dog sitting next to him. Maybe you didn’t see him. He was just another fixture, among the pumpkins and the vending machines.

Maybe, when you did notice him, you got that uncomfortable feeling in the pit of your stomach?

Without making eye contact, you changed your the path you were taking ever so slightly, so as not to intersect with his. A subtle move, but this way, you can look anywhere but towards that direction, and head into the warmth, safety and comfort of the grocery store chain, pretending not to have seen the homeless man sitting near the entrance.

I did notice him.

I walked towards him.

The crisp air has that bite to it. It is going to rain. My feet move faster, as I try to get under the protection of the building’s overhand. As I get closer, his dog gets up, slowly, as if stiff from arthritis, tail wagging at my approach. I kneel in front of the old dog, scratching that spot on her back, the ever out-of-reach area that all dogs enjoy getting some added attention to.
I smile, letting the dog break the ice between us.

“Her name is Allie!” He tells me that its short for “Alcohol,” because she is a “liquor.” I give him one of my sideways smiles, it’s hard not to when I can see he is giggling at his own inside joke.

“Can I get you anything from inside?” I ask him.

The dog looks well fed, but I offer to feed her as well.
The toothless grin widens, as if in disbelief that I stopped to offer him something. That I noticed him.

“Maybe a cup of coffee or a cup of soup?” He seems as if he may be asking for too much and doesn’t want to offend me. His face is apprehensive.

“What about her?” I ask, jerking my head towards his dog.

His smile widens even more, the wrinkles around his eyes deepen as he tells me she has plenty of food. Judging by her extra padding, I nod my head, chuckling with him in agreement.

I make my way into the store, grabbing the shopping cart. I never remember to write down what I actually need, which inevitably leads to my overspending and grabbing items that aren’t necessary. Wondering if I should grab him a beer or a pack of cigarettes, I scoop up a to-go container of chicken noodle soup. Grabbing far more crackers than are actually necessary, I pile it into a haphazard stack on the child’s seat of the cart. I wonder if the cashier will make me put some of these saltine crackers back, as they spill over. I make my way around the store, grabbing what I came in for, and items I don’t really need, but I fill my cart anyway.

I grab a bottle of water and glance around for something else that might tide him over. Without teeth, I imagine it might be difficult to eat the sandwich I picked out. I grab it anyway. And a package of M&M’s.

I ask the cashier to bag these items separately.
She inquires if its my lunch break. I simply tell her no. I don’t feel like telling her my motives of packing a lunch. She does tilt her head, questioning me, as I grab a $20 and stick it inside the bag.

The great pile of pumpkins greets me as I exit the store.
I feel slightly panicked when I can’t see him.
What if he was asked to leave? Maybe the manager asked him to get off the property?

No Loitering Allowed!

I make my way around the concrete pillar, and there are his boots, legs stretched out in front of him. Worn and tattered, along with his old cargo pants, he slowly comes into view. This time, the old dog just wags her tail, too lazy to stand and greet me again.

I kneel beside them, as I hand him the plastic bag full of goodies. He glances up at me, looking astonished at the items in the bag.

His name is Joe.

He has blue eyes, and a scraggly face that is kind. His hair is thinning, and its dirty, matted to his head. He has a warm jacket on, but I wonder if the cold from the concrete is seeping into his bones yet.

He tells me how he was living over in the trees across the street. He points with twisted fingers, to the lot near the intersection. Unfortunately, the owners had the trees thinned, so he had to move again. There is a “pallet paradise” up the road a way, that he and his buddies built. He shakes his head in disappointment. He knows all his effort will be for nothing soon, as all the vacant lots are being cleared for new growth. He tells me that there aren’t many places left for him to pitch a tent anymore. He likes to hide in the trees, where no one can see him. It is getting harder to find nooks and crannies to make a camp.

If you are wondering if he has been homeless long, the answer is yes.

He has been homeless for years.
I ask him if he has tried any of the shelters.
He laughs, shaking his head, more out of disgust than anything.
Every shelter tells him he is welcome, but that his dog is not.

“Would you give up two of your children? Because that is what they are asking of me!”

I agree with him.

I understand more than most that when you have very little, the things that you do have will have more significance and meaning in your life.

I tell him about several of the shelters I do know of, asking him if he has tried them. He tells me of the ones he has tried, and unless you are willing to follow their exact protocols, they will not accept you. I ask about the place on 2nd street, if he has gone in there, to at least get some food.

Again, he tells me that he has made the effort to venture in, but that they kick him out in the evening. I ask what he does to stay warm. His shoulders pull back with pride. He stays warm because he has a heater in his tent. He smiles that toothless grin again when he sees my astonishment.
Not many of the homeless people have means for additional warmth.

I glance over my head.
A man on a bicycle is riding by.
They give each other the perfunctory nod.
A silent gesture of hello.

I realize that the man on the bike is more than likely homeless as well, though he looks far cleaner than Joe.
Music is playing quietly on his little radio he has sitting next to him, and he pulls out a pouch, stuffing his pipe with tobacco. Most of his belongings are stuffed into a duffel bag beside him.
I introduce myself, shake his hand and wish him well.

Who am I to judge if he is happy or successful?

It seems to me that a man, with a loyal dog and his beautifully carved tobacco pipe, may have more happiness than many of the strangers rushing into that store, refusing to acknowledge him, simply because he doesn’t live by their rules.

I feel a twinge of sadness that he must adapt in order to be considered worthy enough to be helped. Then again, isn’t that the way of the world?
We adapt, or we don’t fit in.

Joe is an outsider. He thumbed his nose at those who would give him charity, but charity by their rules and requirements. He is loyal to his dog, an animal that he told me has kept him safe from other humans and animals wanting to do him harm.
He will never leave his trusted companion simply to look out for himself.

Many people probably view him as crazy, mentally ill perhaps. And maybe he is. I imagine many are scared when they look at him. He doesn’t act like everyone else. At the very least, he makes people uncomfortable and on edge.

His needs are far simpler than most. I don’t know his story. I don’t know what choices he made, or what situations life threw at him to have put him in the situation he is in. I simply offered a smile, a conversation, eye contact to let him know that he is human. He is worthy of being noticed on a chilly fall afternoon.

We are all worthy of being noticed…

 Matthew Wild

to be seen…

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Can you just see me for a minute?

Not my face, not the outside of me…not the funny memes I post or the inspirational quotes.

Me…

The real me.

I just need you to know that today is one of those days, where I am tired, mentally and physically. I managed to get a few hours of sleep, and then I was up and down the rest of the night. No different than any other night. A few hours here and there. My baby boy crawled into bed, not feeling well. The dogs ran in and out of the damn dog door, creating chaos over imaginary images they needed to protect us against.

I went to lay on the couch, but Matthew called for a sip of water as soon as I dozed off…Then a few hours later, he needed another one. I stumble around, trying to reach for the urinal, helping him, as my eyes close out of sheer exhaustion. Trying hard not to spill it back on him, as my body sways, eyes burning from exhaustion
.
The couch hurts my back, but there is no room on my bed with a growing boy who kicks and squirms throughout the twilight hours.

My alarm buzzes my arm at 6 am.
I talk to myself.

Sometimes, I count down the hours.
“I only have one hour before the kids go off to school.”
“What can I put off for tomorrow or next week?”
“Why is the coffee not kicking in?”
“How soon can I go back to sleep?”

I ignore the pain in my back, and the pain that is back in my wrists again. My stomach is hurting, but there is no time to be sick.

Can you please just see that I am trying?

I feel like an imposter most days. Smiling when I feel anything but happy. How can I keep doing this? How long can I keep pushing?

I need my children to keep a sense of normalcy in their lives.

Dinner, homework, chores, sports, friends.

Normal happy memories to remember.

Make sure that Matthew doesn’t feel like a burden. Even though he wants to lay back in his wheelchair, needing pillows fluffed, blankets and heaters…three times throughout the day. Stop what I am doing to help him..again. Please don’t make me go back in there again. I try to keep the irritation from my face.

I don’t want to fix dinner…

Pull the chair up to the table and dish the food into his mouth. Don’t spill. I just showered him. Ask him what food he wants, which bite of what food he prefers. Be aware that he should still have a say in how he eats.

Ask the kids what they are grateful for…remind myself to do the same. Find things to be grateful about. I have a good life. I have many things to be grateful for….so why do some days feel so heavy?

Don’t eat what he is eating. Those damn twenty pounds refuse to budge. Of course, its my fault. I am the one who drinks the wine, finding a momentary bliss of numbness with each glass that goes down so easily and I am the one who sneaks the bites of food that he is craving…food I would normally never buy on a regular basis, but now have to because he craves it. His jaw is slowly weakening. Let him eat.

Someday soon, he won’t be able to.

I didn’t make it to the gym again. I used to love to get up early and go. But it feels like one more thing on my to-do list. My body hurts.

I am lonely. I am lonely for conversation. I can’t remember the last time I sat and talked to someone for the enjoyment of just having that back and forth. I am lonely for companionship and to be touched. I miss having freedom.. To go to bed without having to first put him in bed. To get up in the morning, and to come and go as I please. To join girlfriends for drinks in the evening, without having to plan weeks in advance. To dance! I miss dancing. I miss laughing so hard I snort. I miss so many things.

I am worried. How much longer can Matthew stay strong. How can I keep my irritation at bay, that he has no one to talk to, or visit. How strange that he sits there, day in and day out, all alone, watching tv or facebook. He doesn’t lean on me either. I think because its easier to ignore it than to address it. I try to remember that it’s been almost 5 years. Life goes on…well, for everyone but us.

It does no good to talk about ALS, or how it is to manage it, if I can’t be real about the actual struggles of dealing with it, every day. What is the point of social media, or writing at all.
I don’t assume that my struggles are any more difficult than the next person’s. We all face unbelievable adversity; challenges we never saw coming or could possibly prepare for. But today..today is just a bit heavier than most for me.

And I needed someone to see me, the real me…for just a minute.

And I need to see you; the struggles you are facing, and to know that I am here in case you need to vent or need a friend to lean on. Because honestly, what the hell is the point of this thing called “life” if we have lost the most important connection of all?

To be seen..

 Matthew Wild

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.