She has grit…

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She has grit.

I haven’t met her, but I can hear it in her voice. They are barely diagnosed, just over a month ago. She has small babies. This couple seems so young. Barely in their thirties. At least, they seem young to me.I remember how hard I thought it was to raise three babies before ALS. Now I envision just how much more difficult her life has become, and I can’t be the one to tell her.

She assures me she has a large support group around her. I try to convey how important it is that she learns to accept help now, before they need it. Because as the road becomes more difficult, many people who convince her of their support and love will no longer be able to help. And the idea of asking for help will become harder, as more and more people avoid the promises they thought they could keep.

Her baby is in the background, a small voice. Her patient reply, with love in every word.

Do I tell her how exhausted she will become? Do I tell her that I understand the weight that has been placed on her small shoulders.

Instead, I try for reassurances.

There are resources, and support groups. There are foundations that can help alleviate some of the stress, but really, this will all be for her to navigate.
I try to remind her that their mindset and partnership together will determine much of how this will affect them. That if they adapt to the challenges, and look for ways to still maintain some semblance of their lives, that they will learn to live with the disease instead of simply learned to watch as he slowly dies from it.

I recount the numerous travels that Matthew and I have ventured on, both with children and without. The escapades, both good and bad, that we have gone on have helped us find beauty in a difficult situation. I tell her that anything can be accomplished if you are willing to adapt to the situation around you. Do I even believe the words coming out of my mouth? I guess it depends on the day.

Her voice is strong.

She confesses to breaking down when no one is looking. He is wearing himself out, trying to remodel their home, and finish the landscaping while he can still move. He thinks he is doing the admirable thing when all she wants is more time with him. The projects around the house no longer seem that significant to her. Yet, for him, he now knows his time is limited. And the urge to suddenly complete all those annoying honey do’s seems more relevant than ever before.


I want to tell her this will be both a blessing and a curse. They will soon learn, perhaps finally fully understanding that his cards have been played and this is it. This is their journey. Together, yet completely different. They have the opportunity to let go of all the trivial stuff, to stay present, and enjoy each moment for how they were designed to be enjoyed. The toddler antics, including the temper tantrums will suddenly seem beautiful moments instead of something to be dealt with, or even tolerated through the day. The chaos of toys, and the never-ending piles of laundry will be thought of as enjoyable items that make a home. There will hopefully be more videos, and photos, regardless of her makeup, or weight, or his progression of the disease that will steal his image, creating in its wake a body that no longer resembles the person they once had been. They have the opportunity to lean in and be together for however long they have.

Yet the curse comes in not knowing the speed or the suffering that comes with this devastating hand they have all been dealt. The curse will be in the realization that their expectations of other people around them were misplaced. The curse comes as the sadness builds as she realizes that she will be forced to give up her own life, dreams, and goals to care for him. It will be expected of her, and no one else will step in to offer support. There will only be her. How she feels about that challenge will change for her week by week, hour by hour, minute by minute.

She has grit.

Now hopefully that grit sustains her for the long road she will be traveling down, as she will carry an unimaginable heavy load. There really is no other choice. And that grit will be the only thing keeping her going on most days.

Let’s pray it’s enough….

❤ Matthew Wild

Freedom can wait…

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The little reminders were everywhere. With a turn of my head, I can see how my life is not like theirs. I am reminded how my life is different. This invisible line that divided my life from before and after seems starker and more pronounced than ever lately.

I can fool myself into thinking that this is normal, but as I drive through town, I can see what so many others take for granted.

The mountains rest gently along the lake.  There is smoke hanging low, refusing to let the tourists see all the beauty that is hidden behind that sheer curtain that has been our constant companion these last several days.  The tourists don’t seem to mind, nor even notice.  They walk the streets of our quaint town, stopping to window shop, or to find a table along the sidewalks for a bite to eat.

This is when I feel it the most.

I want so desperately to pull my car along the street’s edge and to walk towards the water.  To feel the warmth of the sun, and the carefree last days of summer.  To lose all sense of time or responsibility and to meander along at my own pace and on my own path. I want to walk along the pathway that leads to beaches, and children playing. The park where strangers smile at each other as they pass.  Those out strolling, a dog at their side.  The boys shooting hoops, or the teenagers rushing past towards the skate park on a precarious sliver of wood on wheels, to show off their latest attempts at fooling gravity.

I continue driving.  Each red light, I glance around.  There are new stores I hadn’t noticed before.  The local watering holes are full of regulars; bikers with their leather and fringe, the retired who have claimed their seats just short distance from their classic cars, their pride and joy. The ladies sauntering back and forth, hoping to catch an appreciative glance their way.  The families from out of town, managing strollers and diaper bags, hoping to shield their young one’s eyes from the dangers of that side of the street. Young tourists, holding hands and strolling along, imagining what it could be like to build a life in this idealic, small community.

I yearn to have the freedom to stop. To walk with those strangers on the sidewalks, to see the town through their eyes. It is not the people that I want to lose myself in but the freedom to come and go that I crave. The idea of being able to go where I want, with no agenda, or responsibility waiting for me. Instead, I quickly glance at the numbers on the dashboard.

I am late.

My son is chatting happily beside me, not noticing that I am frustrated with every red light.  It is a gift and a curse that I have, to be forced to stop at each and every damn light that I happen upon.  I should take the time to slow down, to breathe, to remember that this too shall pass.  Instead, my anxiety climbs with the ticking of every minute I am forced to wait, and to notice how my life is not like theirs.

Always, I am planning, adjusting or bending to what other people need or want.  I have accepted that this is my journey, this is my path. Yet the days when I get just a moment of respite or freedom from a life of ALS, I instantly feel it.  There are days when I feel as if I am confined in a tiny box, ready to escape at a moments notice.

Yet I also know what that means. I know what happens when I am no longer caged, bound to the ties around me. I know what happens when I am no longer living a life that is shrinking smaller and smaller with every year that passes. When I am finally free, it will be with a broken heart.  I will have lost something precious once that freedom is gained.  Instead I continue to fight these feelings of discontent when they pass over me. Instead, I choose to stay…and I will remind myself that these feelings are temporary, this part of my life will one day be over.

One day, he will be gone, my children will be grown and I will have the freedom to come and to go at my leisure. No one needing me, or calling out for me to take care of their needs and their wants.  One day, I will have nothing but time to focus on me. One day, I will no longer be needed. 

And this thought terrifies me…

The sacrifice we all make

Gayle Forman Quote: “Sacrifice, that's what we do for the people ...

Welcome to our world!

Please, come in and make yourself comfortable. Now I realize that at this very moment you might be feeling a bit out of control.  All the feelings floating throughout your body are completely understandable.  After all, you have been told that there is something that is out there… Something that is completely unseen, but it is deadly.  And this will, without a doubt, completely affect the rest of your life.

These are difficult times, for sure.  I can also relate to some of that fear you might be feeling.  The fear you are feeling is similar to what we were feeling that February, late afternoon, all those years ago. Matthew was diagnosed with ALS five years ago. A disease that is still untreatable, uncurable and unstoppable. No matter how much I read, or tried to prepare, the fear was still there.

Five years?  Can you believe it?  Time kept marching on, whether I wanted it to or not.  And still, the silent, and invisible disease known as ALS, is unstoppable.  It continues to move silently, wreaking havoc on his body, as well as the thousands of other bodies around the globe. Matthew has passed the “average” time that most people live with ALS. The average lifespan for someone diagnosed with ALS is three years.  He is now in the 10% of people who live past five years.  Only 10% percent of patients live past 5 years.  Only around 5% to 7 % live past the 10 – year anniversary.

This time might be a little uncomfortable for many of you.  Trust me, it’s not every day that you are told that the chances of you losing a loved one are so high. This unknown has the potential to affect you, and everyone around you in some way, in the not too far distant future.

This time is scary, no doubt about it. Thankfully, you do have some control in how this plays out. Unfortunately, for caregivers and people with what they call “underlying conditions,” our anxiety just shot up about a million times higher.

We already live a life of quarantine.  We stay away from people who are sick, even when we risk offending our family members and friends who may not understand that a simple cold or the flu bug can potentially kill the person we love.  We seldom went out in public for months before this virus became the sensational talk of the town. The effort it takes to go out wasn’t always worth it.  To make matters so much worse, there is now something out there that is deadlier than a flu bug or cold that we have to prepare against. So our days of going out are far less than ever before.

I have reached out to so many other ALS families, asking how they are doing.  The almost funny part about this entire situation is that if you are a caregiver or a person living with a terminal disease, or suffer from a compromised immune system, then you know our  life really hasn’t changed all that much.

I imagine for most of you, the idea of being cooped up in your home for weeks seems impossible and horrid. I stopped being excited about Friday or Saturday nights years ago.  Depending on the weather, the season or even if Matthew was fatigued or feeling anxious about being in public, we were housebound. Over the last two years especially, our life has increasingly become more and more reclusive. Some of that is because of the disease, and some of that, I assume is because of how we are mentally handling all the parts that aren’t talked about when it comes to a terminal illness.

I picked up the phone to call a dear friend the other day. I asked how her children were doing. Her answer; the only difference in their lives are that they aren’t going to school. Other than that, they have been housebound for years!  YEARS!  At one point during her husband’s illness, she was begging to leave her house for one hour a week.

Yes, you read that right.  ONE HOUR A WEEK!

She spent years housebound, caring for her dying husband and her children.

I have another friend whose husband was so stubborn that he refused to use a power wheelchair.  Even though he had lost the strength to safely walk long distances. To compensate for his stubbornness, she would maneuver him carefully and slowly, every single day into his recliner, help him eat, use the restroom, and attend to his needs at his beck and call.  She was housebound for years as well. She would hire caregivers to help out, but the process of the paperwork, and training someone to care for her husband, and what to do if he choked and could they safely help him without hurting themselves or him became a serious point of contention. I imagine it was tedious as the wife, because after all the effort of hiring new caregivers, it often resulted in them leaving after a few weeks, if they even made it that long.  Once he finally agreed to using a wheelchair, they found a little freedom for a short while, at least.  And for a short while, photos of their family enjoying restaurants and some lovely drives to look at the scenery were once again on their Facebook feed.

They are back to being fully quarantined, while she is the only caregiver, and mother of two young girls.  She sees to all their needs, and no one will be able to cross their threshold for quite some time.  Maybe it’s a good thing she was already well trained in being housebound for weeks at a time?

Several other families said that besides worrying about a shortage of toilet paper, they really don’t have the opportunity to go out anyway, so a quarantine situation simply means that they can’t allow anyone into their homes.  They hadn’t really changed anything else in their lives, and no one really came by to visit anyway.

Where am I going with all of this?

Your world is turned upside down.  You are being asked to completely rearrange your life.  You are shut off from your friends and family and there is no where to go. You might be angry, even disbelieving what is happening.  There has to be a better way, right? Maybe you are sad at the thought of your livelihood completely changing, and you have no idea what this will look like once it is all over.

Trust me, I get it!

Once Matthew was diagnosed with ALS, I had this set of preconceived notions.  I thought I knew how people would react, how they should help and how the disease would progress. I planned for every possible scenario…and yet, no matter how much I worried and stressed about all the possible outcomes, it still never played out the way I thought it would.

I am scared.

This virus will absolutely be fatal to my husband. No doubt about it. ALS has affected his diaphragm, and his lungs are only functioning at about 30% of a normal person’s capacity as it is.  I have a very vivid imagination, and the thought of an ambulance taking him away and I would never get to see him again or be there for him is petrifying.  Add the absolute panic that this will affect my children, and I am beyond a doubt, not liking the images playing through my mind daily.

I am scared for my children and my parents and for all my loved ones.  I can absolutely admit that with no shame.

However, I have learned that I have little control in how this plays out.  We are only letting a select few enter our home, and even that may come to an end soon.  We are trying to give scientists time, and the people who know what they are doing precious time.

Time.

It has always been the enemy for us.  Because as the years go by, it means Matthew would be that much closer to becoming a statistic for an ALS chart. But now, we are hoping and praying for time to slow down once again. Not just for us, but for all of those who are out there, trying to protect, and to stall an invisible enemy. Time for resources to become available, and time for people to rest and heal, come together, and most importantly, work together.

And now, this time…. You are getting a small snippet of what it is like to become a full-time caregiver. You are getting to experience just a little bit of what it is like to live a life caring for someone else. To have no ability to leave, no one else to lean on. To lose connections with your friends. To have your world shrink.

The only difference is that this time, we are all living the same experience.  Many caregivers had watched the lives around those around them continue, as theirs had progressively shrunk. They watched with envy, maybe even jealousy and a bit of anger, as those around them continued with their lives, unaware, as the caregiver watched from the sidelines, coveting their freedom. This time, everyone around us will be making sacrifices, and it will not be an easy transition.

This time, you are now in it with us.  And I can’t tell you how sorry I am that you are experiencing this. That we are all experiencing this together. And I can only hope that in time, we will see that this sacrifice was worth it.  The same sacrifice that every caregiver makes when they can no longer simply walk out the door or walk up a flight of stairs. To come and go, to experience life in all its beauty, that so many take for granted on a daily basis.

Keep searching for gratitude, look around you and remember the blessings you have. And remember your “why.”  Offer help if you can, and snuggle in with those in your lives.  Who knows how long this will go on. But remember, it will be worth it if you remember why you are doing this.

We sacrifice to be there for those we love the most.

❤ 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.

connections….

She must have noticed how my face fell in disappointment as my head turned, first to the right, and then to the left of me. I had run into the store to grab a prescription, leaving everyone waiting in the car. As I went to close my door, he asks me to quickly grab him something as well.

I nod my head, irritated as I hurry inside.

Matthew had a craving for Reese’s Peanut Butter Cups lately and asked me to grab a few. I tried to remind him that we had plenty of M&M’s and Kit Kats at the house, sitting in the freezer. The kids had been gone for several days, so the candy hadn’t been gobbled up just yet. But, no, his craving was specific, and judging from previous experience, if I don’t acquiesce, than the craving builds into some incredible hunger monster of epic proportions, often resulting in his “Go BIG or go home” philosophy that ends up with him miserable and having a stomach ache.

Now, I am standing there, prescription paid for in one hand, and three king sized Reese’s packages in the other, hoping to get through the checkout in a minute or two…not the twenty minutes it looked as if it were going to take, judging by the long line of full grocery carts in front of me.

“Would you like to go in front of me?”

I looked up into a sweet face, waving for me to come closer.

“That would be great, thank you!”

I squeezed in between the cart and her, sucking in my stomach as I did this, shuffling my feet in a strange dance as I place the candy bars down on the conveyor belt. In full disclosure, sucking in my stomach does not, in fact, make my ass any smaller as I try this…but it is always worth a try.

I had noticed, as this older lady and I had done our strange shuffle dance, that she had a bandage just under her shirt. I assume it is a port, and I try to glance away quickly so as not to make her uncomfortable that I had been staring. My eyes venture over to the stacks of pizza boxes and frozen egg rolls, and various other over-processed foods. Maybe she has a Matthew at home as well.

She reaches over to rearrange the food, smiling.

“My grandsons are coming over tonight for a sleep over. They are bringing some friends and instead of cooking, I am hoping this might be enough to fill them up for a while!”

I know all too well how hard it is to feed the never-ending pit of teenage appetites. I learn that her grandsons are in their teenage years but still love coming over to Grandma’s house. I share with her I how I can’t wait to become a grandma!

Wait!

I quickly clarify that I can in fact wait, as my oldest is not quite 18 years old, but that I am looking forward to spoiling babies…only handing them back when I am done!

She mentions that she has enjoyed having her grandbabies over since she moved her almost thirteen years ago.

We talk more about parenting and the joys of kids.

She tells me how perfect her grandkids are. I nod, telling her that my children are also pretty perfect.

“It’s the parents, you know.” She leans in to tell me this as if it’s a secret between us. I laugh, telling her I don’t think I had much to do with it. I was really just blessed with great kids.

“When people tell me that kids today are awful, I just don’t agree! It’s the PARENTS that are awful!”

I can’t help but agree with her a bit on this.

She mentions the cancer.

She is doing really well with the chemo. In fact, today was her anniversary and she celebrated by having another chemo round. Her husband wasn’t doing anything to celebrate, but she seems content with feeding teenage boys with copious amounts of junk food.

She proudly pats the stylish grey bob on her head, “I did lose my hair, but I have plenty still to spare!”

I tell her I am sorry but that I am glad she is still feeling so well.

“It was more emotionally hard seeing all the other patients come in, looking sicker and sicker with each round.”

I nod in agreement again. I have no experience with that, but I can imagine it must be really scary and difficult not knowing.
She says how thankful she is, because she knows it can be worse.

I mention that my husband has ALS but that I have learned to find even the smallest things to be grateful for.

Her eyes widen, and then fall as they fill with sadness, her hand squeezing my forearm.

She gets it…

I give her a small smile, trying to comfort her as she tries to apologize for something she has no control over.

I don’t have any person experience with cancer. I know people who have had cancer. I knew people who have passed from cancer, but my experience with having a close loved one with cancer and caring for them is next to nothing.

However, there is something comforting about looking into another person’s eyes and finding compassion and understanding.

For just a moment, two complete strangers were able to connect about how life isn’t fair, but that joy can still be found in the love for family, a few boxes of pizza and maybe a Reese’s peanut butter cup or two.

And that craving of Matthew’s?

Yeah, those king-sized bars made their way into the freezer, along the other piles of junk food…

 Matthew Wild

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Nightly routines…

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It is the same process, every single night.

Mundane…sameness…always the same monotonous events that take place for bedtime.

  • Brush his teeth, but don’t use the minty toothpaste. He doesn’t like that one.
  • Wash his face, but only in certain spots. It makes him chilly to have his face damp.
  • Use a q-tip and scratch the itches his fingers can no longer reach. He gets that look in his eye when you find that good spot, not unlike a dog feels when you hit the magic spot.
  • Use a bit of tissue, and pick at his nose. (I used to feel squeamish getting up in each nostril, but now, my stomach doesn’t even do a little flip flop as my fingers go up and wiggle around, the tissue swiping at any loose snot balls.)
  • One medicine for anxiety, one for sadness. One that is supposed to slow down his progression. We know two out of three of those meds work for certain.
  • Pour a capful of white powder and swirl around until dissolved. (It helps him poop.)
  • Place the pills in his mouth, his tongue is twitching again. Quickly lift the thickened water to his lips.
  • Remove his lap blanket and place the hand-held urinal between his legs. Push his legs apart so that he pees in the urinal and not all over himself.
  • Roll into the bedroom and start a machine. The clicking of air, pushing in and out, his cheeks puffed, as he coughs.  (The cough is weaker now. Nothing much ever comes out.  I can’t tell if I should be thankful for that or not.)
  • He tells me he thinks he may be getting sick. His throat hurts and he feels warm. I tell him he isn’t getting sick and deep down I silently pray I am right.
  • Grab the giant metal arm, attach the loops and hit the button. The arm pulls him up and out of his wheelchair. His ass scrapes along his controller, again. I seem to do that every night.  He gives me a pouty face, as I apologize…again.
  • My face turns red as I pull and twist the metal contraption over towards the bed.
  • Grab the remote for the bed to lift the headboard up, as I simultaneously lower the metal arm down on the bed. Push with my shoulders, and pull his legs out straight, so he doesn’t cramp.

Pay attention, Theresa!

  • Don’t sit him too high or too low. Keep the headboard at a little less than 90 degrees, just the way he likes it.  Unhook the loops, pull the metal arm away from the bed. Tuck it back into the shower, where we can hide it and pretend for just a few hours that it is not a necessary tool for me to move him to and fro.
  • Pull the straps and the sling out from under him.
  • He winces.
  • Place the bandaid over the bridge of his nose. It looks raw and sore again.
  • The mask goes on next. Hit the ON button. It screeches to life.
  • Find the remote for the headboard, which is now buried between his legs and blankets. The dog is laying by his feet. The dog isn’t much help.
  • Laying him slowly back, there is one more thing. Scratches…
  • Grab the baby powder by the night stand
  • Dump it anywhere there is a crevice. (I’ll save you the embarrassment of describing all the places that baby powder goes.)
  • Attempt to roll him onto his side. Not before he whines. He wants scratchy time to last longer. I do not
  • Check for pressure sores. On the back of his legs and his buttocks.

I grunt again…I swear he is more square than he is round.

  • Get his leg pillow just right between his legs. Adjust his head pillow to match. (He asks me to push him more. He isn’t on his side all the way. He will tip back over if he isn’t just so. Several more attempts. Several more grunts)

I give one more hard push…

  • “OWWW, I think you did something to my back!”

I panic! My eyes scanning his body. I can’t imagine what happened. I pause looking him over, his butt cheeks out in the open, legs bent

  • “I don’t think my legs work anymore!”
  • Then he giggles.
  • Rolling my eyes when I realize he was trying to be funny.
  • “Ok, I am going to go lock up.” I say, as I pad barefoot out of the bedroom.
  • “I’ll be right here!” He yells.
  • “Don’t move!” I yell back.
  • I shake my head with a little grin.
  • It is always the same thing…every single night.

he said, she said…

He said, “Wow! It’s nice to meet you!”

She said, “hello….”

He said, “We have a mutual friend.”

She said, “She invited me to come listen to the music with her.”

He said, “I am glad you could make it”

She said, “Thank you. I don’t get out often.”

He said, “Can I buy you a drink?”

She said, “no thank you”

He said, “Its been months, how are you?”

She said, “The summer went by too fast”

He said, “Can I buy you a drink this time?”

She said, “Sure, I would love a water!”

He said, “It’s loud in here”.

She said, “WHAT?”

He said, “Do you like live music?”

She said, “Yes, It’s my favorite!”

He said, “You came with her again?”

She said, “I’m her designated driver.”

He said, “Here is your water.”

She said, “Would you dance with me?”

He said, “yes”

She said, “You can DANCE!”

He said, “Wow, so can you!”

He said, “Will I see you again?”

She said, “Maybe…”

He said, “I haven’t seen you in weeks, where have you been?”

She said, “My life is complicated….

He said, “What do you do?”

She said, “I go to school”

He said, “would you like to go dancing?”

She said, “ok”

He said, “Are you seeing anyone?”

She said, “No…and I want to keep it that way!”

He said, “Why?”

She said, “I am recently separated.”

He said, “I was married for a long time too”

She said, “I have children”

He said, “I bet they are great!”

She said, “You aren’t my type”

He said, “I know, but can we keep dancing?”

She said, “Yes, I would like that…”

He said, “We have been dancing every month for almost a year now!”

She said, “I just want to be friends…”

He said, “I know…”

She said, “I’m not ready for a relationship.”

He said, “I understand. I am happy just being your friend.”

She said, “Thank you for being such a great friend to me”

He said, “Who are you here with?

She said, “I am here on a date tonight”

He said, “Do you like him?

She said, “I don’t know yet”

He said, “That guy shouldn’t be flirting with your friends”

She said, “I guess he wasn’t that into me”

He said, “He’s an idiot”

She said, “Thank you”

He said, “You deserve better!”

She said, “I agree..”

He said, “I like spending time with you”

She said, “I need to take things really slow”

He said, “Of course”

She said, “I think you are looking for more than I am ready to give.”

He said, “I have all the time in the world.”

She said, “What’s wrong with your fingers?”

He said, “Nothing, I am sure it’s nothing”

She said, “I am not ready”

He said, “I’ll wait.”

She said, “Please go to the doctor.”

He said, “Go to Cabo with me!”

She said, “I am a single mother, I can’t go to Mexico!”

He said, “It would mean so much to me!”

She said, “Will you go to the doctor?”

He said, “Of course, as soon as we get back!”

She said, “Its beautiful here!”

He said, “Thank you for coming with me.”

She said, “What did the doctor say?”

He said, “He wants to run some tests…”

She said, “It is going to be alright…”

 

He said, “I have ALS”

She said, “I know”

He said, “I’m scared.”

She said, “Me too”

He said, “Maybe you should leave?”

She said, “I promise I will stay”

He said, “Will you spend the rest of my life with me?”

She said, “Yes”

He said, “My legs are getting weaker…”

She said, “We need to find a new home”

He said, “I want to marry you and dance with you on our wedding day.”

She said, “There isn’t much time.”

He said, “I am sorry we are rushing things.”

She said, “I am sorry that the last time we danced was on our wedding day…”

He said, “I don’t want to use the wheelchair.”

She said, “It’s there when you are ready…”

He said, “I can’t lift my arms anymore.”

She said, “It’s okay, I am right here…”

He said, “Don’t worry, we are going to be alright…”

She said, “I don’t know how to ask for help”

He said, “Neither do I”

She said, “I don’t know if I can do this alone.”

He said, “I feel like a burden.”

She said, “You are not a burden.”

He said, “Happy Anniversary!”

She said, “It’s been 3 years?”

He said, “Its going by too fast”

She said, “I feel so alone”

He said, “So do I…“

She said, “I never get to go out or do anything anymore”

He said, “Neither do I”

She said, “I didn’t think it would be this hard”

He said, “Neither did I”

She said, “I miss being held.”

He said, “I miss touching you.”

She said, “Where did everybody go?

He said, “I don’t think they can handle this.”

She said, “I am so angry.”

He said, “I know.”

She said, “I had different expectations.”

He said, “I think it’s just you and I.”

She said, “You are my person.”

He said, “Thank God I have you.”

She said, “We still have so much to be thankful for…”

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