love – Page 2 – ALS Fact of the Day~

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…

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

San Fran! – Take 2!

ALS Fact of the Day~

If you must know, I never write if I’ve been drinking. Matthew says its because I refuse to be truly vulnerable.

Pff!.
That couldn’t be further than the truth.

The truth is that I simply don’t have the ability to form complete sentences if I have had a drink or two. It’s similar to drunk texting your ex at 2:00 am after a night of too much indulgence, or getting on stage with a microphone after knocking a few back and thinking you can speak coherently.

It’s just a bad idea!

You’ll end up thinking you sound intelligent. But in reality, you’ll come across as desperate and probably a bit inept.

I left off on our California adventure having had a less than ideal experience in San Francisco. We had hoped to have two days to explore, but after the hotel and trailer fiasco, we would have to make due with only one day left..

I stopped writing for the remainder of the trip because, as you can probably guessed by now, I began drinking every night.

Don’t raise your eyebrows at me!

It’s hard work, daunting even, to be solely responsible for a paralyzed man, two children and all that that entails, thousands of miles from home, or help of any kind. Falling into bed exhausted, the last to close my eyes, and the first to open them. I took my respite once everyone had fallen into their slumber. I would pour myself a glass of my favorite red wine…or more often than not, some cheap crap from the gas station with a twist top, poured into those little Styrofoam cups from the bathroom counter and relax for just a while, thankful no one is needing me for just a while. Some nights I stopped with one glass; some nights required a bit more of the tranquilizing liquid.

However, Matthew is holding me hostage. He says I need to finish the story and post the pictures so that we can move on with the next adventure!

So here it goes….

San Francisco – Take 2

The city is a hodge-podge of messiness. It is almost as if it can’t quite make up its mind what it set out to be, so it took everything and everyone and wrapped its arms around in a welcoming embrace. Before the gold rush, the city consisted of about five hundred people. One year later, it was five times that size. There was no planning or time for adjustment. They began building in the least desirable location possible. On steep mountains and dense forest on the edge of the ocean.
Just ten years later, the population was over one million.

Yet, now, it feels as if the hippies, the yuppies, the homeless, the hopeless, artists and businessmen alike, have molded into a beautiful condensed mess. There are redwoods mixes with cypress trees, military with peace and love. Vines, flowers of every texture and color mixed with weeds growing in impossible locations. Fog, so thick you can’t see ten feet in front of you, only to traverse a few miles, and see brilliant blue skies, and birds gliding seamlessly across the horizon.

Every ethnicity, culture and race can be found within a few miles of one another, stacked upon each other, not unlike the buildings they co-habitat in. In a matter of just a few hours, we ate at the Fisherman’s Wharf, with Alcatraz looming off in the distance. We walked, following the masses along city sidewalks, when the kids jumped up and down excitedly.

Could they please???

Now, I am not much into the whole Ripley’s Believe it or Not kind of entertainment, but after looking aghast at the prices, I kept walking. Matthew rolled up alongside me and gave me the look.

“What??”

I tried to ignore his scowl.

It’s one I get quite often actually. It’s the “You are being cheap!” look…

Fine!

The next building had wax figures, some so life-like, you could almost sense their eyes following you as you tiptoe around them, inches from their face. The kids were creeped out yet enthralled by Madam Trousseau’s Wax Museum. The Virtual Reality exhibit was open, and this time, when I was given the
“Can we please, mom?!”

I shrugged and left it up to Matthew.

Okay, to be fair, the virtual reality was really cool. A quick walk back to the van and this time, buckling Matthew in to avoid him making a face plant on the dashboard, we went on to the next location.

The Fine Arts Museum, with columns and arches, complete with a beautiful Indian wedding taking place in the center of the columns. Women in colorful gowns, jewelry jangling at their wrists, eyes darkened to accentuate their almond shaped beauty. Men, dressed in their wedding attire, trying not to look nervous, their feet shuffling, as they readjust their vests for the hundredth time that minute. I felt as if we were trespassing, so I ushered the kids along the path, shushing them along the way. Matthew unable to follow us along the pathway by the pond, turned his wheelchair around and began to navigate his way around. We watched the swans swimming gracefully along. The idea of staying still and simply watching life move by for a while was tempting, but my children are unable to sit still for long and I should probably make sure they stay out of trouble.

Instead of simply walking along the path, enjoying the sights, and sounds, they have to run, whoop and holler. The next thing I know, my children are attempting their skills as modern day Tarzans, climbing onto massive limbs, so far high above the ground I began doubting their ability to get down safely.The limo pulls along side the street, and the wedding is about to begin. It is time for us to go.

Chinatown:

The streets were jagged, the buildings looked ragged and old. Paint peeling from the walls, and steep steps into nooks and crannies that promised intrigue and ancient secrets. As soon as we find a somewhat level parking lot, Matthew wheels himself out of the van, we are ready to explore!

Damn…

Each street is cobbled stone and cracked beyond repair. Most sidewalks are crumbling concrete with no gentle slopes to be found. Matthew would not be able to go far. We settled for a restaurant as close as possible to where we parked. We weren’t going to be able to explore this part, but we could at least try the food. Yelp reviews be damned!

Imagine the look on my children’s faces…no one spoke English. No English on the menu, no English to be found anywhere! The menu had strange marks etched beneath photos of food. There was no way to distinguish pork from chicken or beef…All we could do was point to whatever looked appetizing and hope for the best.

The circular platter in the middle of the table was soon filled, and they delighted in spinning it to and from, reaching for new delights. Besides sitting in an area where no one spoke English, it felt like any other restaurant. Families walking in, toddlers misbehaving or whining, and parents scolding them for wiggling. The tone, inflection of the stern voices, and the parental “evil” eye cross all boundaries!

I want to say that we had all the time to explore, but really it was more about racing from one site to another, since we only had this one day to see it all. A drive-by to visit the Painted Ladies (no one seemed to impressed..) to Coit Tower, and the last part of the day, driving down the infamous winding Lombard Street, all before the sun set on our adventure for that day.

I can’t say that it was easy to get around, and I am sure that it is even harder in a wheelchair, as Matthew was bounced around in his endeavors! However, the kids didn’t seem to mind only getting quick sneak peaks here and there, and Matthew was happy to finally see the city that I had told him so much about.

Stay tuned for our next few days of adventures along the California Coast!

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T.M.I.

Disclaimer*** TMI!

If bodily functions make you queasy…I suggest you just keep on scrolling…Nothing to see here…

************

Almost five years ago, when I tepidly decided we could date, but that I really wasn’t looking for a serious relationship at the moment, I had no idea the adventure I was headed towards with Matthew.

Take for example shortly after we began dating. Matthew thought it would be great to take a quick weekend and explore Glacier National Park.

Having no children of his own, we packed up my (then) 6, 8, and 13-year-old children for a fun excursion. Things were off to an awesome start. Fun things to see, hiking and all the smells and sights, in majestic mountains. After day 1, we headed into Whitefish for dinner. I believe Yelp was the go-to app that directed us to a lovely café, on a beautiful street filled with quaint stores, and all the Montana paraphernalia a person could buy.

I remember the kids chose the customary mac and cheese dinners, while Matthew went with a burger and fries.

I chose a warmed spinach salad.

A healthy and delicious meal that I smugly ate, assured in my choices to help my waistline as well a great example to my growing children.

A decision I quickly began to regret.

In less than an hour, my stomach was rolling and gurgling…a sure sign I had food poisoning.

Now, if you know anything about me, then you would know that bodily functions are something I don’t want to announce. So with all the strength of an elephant, I shakily kept my face neutral, while the goosebumps spread across my skin and the sweat broke out across my upper lip and forehead. I quietly prayed I was wrong, and this was just a little stomach bug and nothing more. This would pass, I know it would. I would not throw up. The very idea was ludicrous!

I forged ahead, willing my stomach to hold its contents and not embarrass me in front of my boyfriend on our very first vacation together. And, in less than an hour I knew what was coming, and I was hoping against hope that my body would not embarrass me with what was sure to be an eruption of epic proportions.

Thankfully, I was able to hold it together until they were asleep. Then I hastily crept into the bathroom, running the shower water and sink water, and expelling, quite violently, all the remnants of the rotten, warmed spinach salad.

This event lasted well into the wee hours of the morning. I remember gingerly placing the small waste basket, unassuming to the poor passer-bys, outside the hotel door for the poor housekeepers that morning. I don’t even want to go into details of what happened, but let’s just say, it was violent and from both ends… And poor Matthew…he had to load up three children and myself, weak and unable to move, to drive the five hours back home.

Now fast forward three months after that…

My first trip to Cabo San Lucas! My first vacation in I don’t know how many years.

Matthew has, as usual, planned the most amazing time to be experienced. We went on bottomless boat rides, and sunset cruises. We had drinks on the balcony and walked the beach, watching the sun melt into the ocean.

It was perfect…

He excitedly grabbed my hand one evening, wanting to show me the very location where he personally partied the night away with the very famous Sammy Hagar as well as various other celebrities. His eyes lit up like a school boy at Christmas as he excitedly showing me where he sat, drinking and dancing with wealthy socialites and bodyguards, and how he was invited to the after party, long after most people would have called it a night.

The place was called Cabo Wabo. Maybe you have heard of it?

He ordered his usual Coors Light and three tacos.

He raved about these tacos.The flavors and the fact that we just had to try them…

They were good, I guess. Nothing too mind blowing that I can remember. The atmosphere was fun, but I guess without Sammy Hagar, it was just another one of those overly hyped up locations in a tourist trap. And the tacos?

The damn tacos gave us E. Coli that lasted at least fourteen days.

Yep..the same thing that happened to me just three months earlier, only 100x worse!

Only this time…we both were sick…

The rest of the vacation was spent staying within ten feet of any bathroom…and we both were walking a bit funny after the rest of the week, when our bathroom breaks were still happening at least every ten to twenty minutes..

It was less embarrassing, since we were both suffering together, I guess.

You might be asking yourself why I am telling you all this…

Well, I think the Poopy Curse has struck again.

Let me just give you the little by-play last night.

11:00 Pm – I finally close my eyes.

12:00Am – Matthew needs adjusted.

2:30 am – he groans. I sit him up. He tells me his stomach is gurgling. We wait a few minutes. He seems content to go back to sleep.

I lay there for a while. I can’t fall back asleep. I grab my phone. I know better, but I catch up on the news, and waste away an hour. Finally, I set my phone down and close my eyes…

3:30 am – He moans again. He needs to use the bathroom.. ASAP!

Well, shit!

I left the hoyer lift in the trailer. Bad planning on my part.

I quickly dress and run outside into the parking lot, unlock the door and wheel it out. Quickly, I throw the deadbolt back on the hatch and hurry as quickly as possible back into the room.

If you haven’t figured out by now, bodily functions while having ALS is a process…and never a quick one.

Without going into too much detail lets just say, there were sad eyes, apologies and a lot of gagging on my part…and his. And a lot of groaning from him, and comforting words on my behalf

(btw..how I had three children and changed diapers daily is beyond me! I can do anything…literally, I can handle anything…but poop!)

The damn waste basket was put outside the hotel door again. A pile of towels, and about two hours later, Matthew was all cleaned up again.

When we had checked into the hotel that evening, there had been a mistake and we were placed into a regular room. At the last minute, I switched our rooms. (Just in case, I told myself.) There was just no room to move around. After the last two hours, I was so thankful I made that switch..or the mess would have been much worse.

And the kids…yeah, they slept through the entire ordeal!

5:30 am – I close my eyes and finally sleep

7:00 am – my children are giggling, ready for the day to begin

I am determined not to let a little lack of sleep ruin Day two of our vacation!

We load up and are right on schedule!

Well, shit!

Matthew has to poop again. ( I groan a bit inwardly here, not gonna lie..)

Deep breath…Okay, no biggie…

I send the kids out to begin loading up the trailer.

As this is early in the morning, we have plenty of time to make Crater Lake and then a short drive to our hotel in Klamath CA.

I wheel the hoyer lift out to the parking lot…determined not to make that mistake again!

I pull the deadbolt key out of my pocket. Ready to hit the road, the kids are bouncing around, feeding the local chipmunk and being generally goofy.

The damn key won’t fit.

Well, Shit!

In my rush last night to get the hoyer, I had slammed the deadbolt on upside down. Now the key won’t fit in the hole.

Freaking wonderful.

The maintenance man is summoned. After about thirty minutes, he moseys along, hacksaw in hand.

With a shake of his hand, and a $20 bill, I tell him I appreciate his help. He seems to take it in stride and gives me a toothless grin in return for the tip.

Okay, NOW we are on our way. An hour and a half behind schedule now, but all’s well that ends well!

A quick stop for another deadbolt, and we are off!

Kids still have no idea where we are headed or what adventure awaits.

Crater Lake was breathtaking!

Souvenirs are purchased, and without WiFi or a map, and the wrong turn, we finally figure out we were going in the wrong direction for 45-minutes!! Ok, NOW we are finally going towards our next destination!

The Redwood National Forest!

We stop for gas, a quick stretch and a pee break.

The kids and I run in, as I am ushering them through the aisles, sending them towards the snack aisle. FInally, I make my way towards the restroom.

I fumble with the top button of my pants, my mind scattered, trying to hurry so as not to leave Matthew alone in the car for too long, and make sure this time we are headed in the right direction. My jeans are shimmied down and..

Plop!

My cell phone, which was in my back pocket of my jeans, lands in the toilet bowl…

Well, shit!

****Disclaimer #2

Day 2 of Vacation is still awesome! Even with all the little unplanned for quirks!

A letter to my daughter…

A Letter to My Daughter;

The time has come.

I must admit, knowing for years that this moment would be upon me, I was still caught off guard. I had no idea the multitude of emotions I was going to feel, seeing you sit among your classmates, in your cap and gown, as the speaker announced the Class of 2019. As your hand reached up to move the tassel from the right side over to the left, signifying the completion of your high school career, the tears began pouring from my eyes.

I suppose it may seem silly to some, but I wasn’t ready. I’m still not ready for my job as your mother to be over. I have no idea how to move forward as a mother to a young woman. So please forgive me, as I am sure I will stumble along the way. I have had you all to myself for eighteen years. And I want more time. I am not ready for this to be over.

I will never forget the moment those two pink lines appeared, signaling the changes that would soon begin in my body. I will never forget the first time I felt the little flutter of kicks as you began making your presence known. As the months went by, and I was more than ready to have the heaviness of carrying you inside of me over, I would learn so much about your personality, and you weren’t even born yet!

You were ten days overdue. Even then, you were stubborn as hell. I should have learned in that moment, the extent of your stubbornness. There was nothing anyone could do to make you do anything you didn’t want to. It wasn’t until we were both exhausted, and our heartbeats and blood pressure were dropping, the risk too great to both of us, that the doctors in the room decided to take action. After 18 hours of intense labor, you had to be dragged, kicking and screaming into this world.

As the months went by, you taught me how to be a mother. I must admit, I was probably more nervous with you than I was with your sister and brother. I read every book on what to expect, through each month or stage along the way and which milestones you should be hitting and when. You were a great napper but would only sleep through the night if you were walked and sung to. I was sleep deprived for years, but I loved every minute of it!

And true to your personality, you did things when you were good and ready. You were independent from the beginning. Never fearing the strangers around you, or being out of my line of sight, you were off on your own adventures. You waved goodbye on your first day of daycare, with no tears or drama. I doubt you knew I went to my car and cried like a baby, seeing your two-year old self walk into that room of strangers, with out a care in the world.

I remember your first days of preschool, and kindergarten. Your first temper tantrum. WOW! Over and over again, you showed me your fierceness and independence. You never wanted to fit in, nor try to morph into those around you. And you have always excelled at voicing your displeasure at things that do not go your way.

Maybe that is why it comes as no surprise that you were anxiously wanting to grow up and get on with your life. School was never your thing, nor were clubs or sports, or group activities. You preferred beating a drum all your own.

I was the hardest on you. I am sorry about that. I suppose because you remind me so much of myself. I want you to be so much more than I ever was, and I definitely pushed you. You, of course, pushed back.

I watched you walk down that aisle yesterday, that beautiful smile across your face, as you looked at me and said, “I did it, Mama!” and my heart ached once again. Another symbol that my job is over. This is it. I don’t get a do-over, or more time. You are off to begin your new life.

I probably embarrassed you after the ceremony when I grabbed you and began sobbing, my head tucked into the crook of your neck. You are now as tall as I am, and more beautiful than I ever could have imagined.

I will feel this heartache for a while, I suppose. It seems incredible that these years have flown by so quickly, and my role is now changed. I wasn’t ready. I am not sure if I ever will be. My heart is breaking into a million pieces, but I expect this is the same feeling the countless mothers experience throughout their lives.

You taught me how to be a mother. I can never thank you enough for that. It has been the most difficult journey of my life, and the most beautiful and rewarding. I am immensely proud of the woman you are growing into, and I hope that throughout the years, you will hold that independence and strength inside of you. As you struggle, and experience roadblocks and failures along the way, I hope you know you can always lean on me for strength. I will always be here, cheering you on.

I know that I was not perfect, but I hope you know how much you are loved, and I tried to show you how much I loved you as often as I could. I never cared whether you were the smartest or the most athletic, nor the most popular or the most beautiful. I have always been in awe of your ability to walk away from anything that does not serve you, including the need to please others. Your character traits will take you far in life, so hold on to them.
I am still on the journey of discovering who I am, and more than anything, I wish you happiness. I hope you take the time to learn about who you are and the things that bring you joy. I hope you reach for the things in life that are important to you, no matter what the world whispers in your ear, look for what you are passionate about. I hope you choose kindness over judgement, and forgiveness over anger. There will be many times when that will be real struggle. Learn to let go of the things you cannot change and as I always say, “You have no control over others, you can only control how you respond.”

And above all, know that you are loved unconditionally and will always have a mother who will support you and love you, for exactly who you are.

It has been an honor being your mother, and I am excited to see what life has in store for you. You are and always will be, my baby girl.
Love Always,
Your Mama

❤️ Richelle Duffield
Matthew Wild

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When angels have to leave…

“Mama passed away”

It’s six am, and I am eight hours away from home. This is the text message I wake up to. I set down my phone and lay there.

The hotel room is modern, with sharp edges and a cold surface. It seems colder now.

I turn my head. Laying next to me is my baby boy. He is not so little anymore, but when he sleeps, he still reminds me of the baby I held all those years ago. His little upturned nose, long dark lashes laying across his sweet face. His mouth is open slightly, and his hand is near mine. I reach over and gently touch his cheek.

She is gone.

The thought seems foreign to me for a moment.

I didn’t get a chance to say goodbye.

I had seen her the month before, but it was a whirlwind of people and activity, so visiting with her was short. Matthew said she was having difficulty breathing, but I still refused to accept that she could be close to the end.

I quietly rolled over to glance at Matthew.

He is laying in his wheelchair, pillows tucked around him. Blankets piled on top of him. Not much is seen except his head poking through. His mask moving in and out with each breath the machine pumps into him.

How will he take this news? A tear slides down my cheek, and I flash through the memories of when I had first met her and her family. So many smiles, so much laughter, even in the painful moments.

Anticipatory grief is knowing what is coming, being helpless to stop it, yet still feeling the heart break, even after you have prepared for it.

This time is no different.

I knew she was in Hospice. I knew she was tired of fighting. She was in pain. She was hurting. And selfishly, I wish she would have held on.

She was so loved by so many. A mother to many, and a woman who was known for her friendship as much as for hard work ethic, her love of family, and her laugh. Her sweet and caring nature was easy to love.

I doubt I will ever be immune to the sting of hearing when someone has passed. I have seen it almost daily on Facebook for years now, another angel has gotten their wings from this disease called ALS. This may be why I don’t visit the support groups anymore. I meet them, grow to love them, only to lose them.

This family is another one I have come to know and love, and it makes the loss that much harder.

I had the honor and the privilege of watching a family come together during chaos and sadness and hold each other up.

To say I was jealous would be an understatement.

The strength this family possesses, and the love they have for one another has been inspiring to watch.

I witnessed a man, weary and worn down, still get up every day. Even at times where he probably felt he couldn’t muster up the strength to continue, they circled around him, supporting him, so that he could care for her in her last years. Eyes that hold pain, but shoulders that continued to carry the burden and grief of it all.

Her daughters cared for her with comforting hands, helping with showering and dressing. But more than, they were pillars during times when the disease became too emotional for her to hold in. They allowed her her tears and her grief, so that she could show a courageous face outside the walls of their home. Grandchildren that wanted to be with her all the time, no matter that towards the end, there was a constant reminder of her illness wrapped across her face to help her breath.

I am not naïve to think they did this perfectly. There is no perfect. And there is no right or wrong way to deal with a diagnosis like this. But if I could look to a family who handled this with grace, support and love…this family came together during the most difficult of times and I am in awe of their strength and determination to walk this journey together, side by side. I wonder if they know how truly lucky they are to have each other. So many other families are torn apart, but this family seemed to huddle even tighter together.

I can’t help but hurt for her family now. This woman was giving and kind. She wanted to support others as they traveled the same road she was on. She wanted to lend comfort and wisdom and she wasn’t shy in schooling those about the ins and outs of ALS.

I have no doubt that those who walked away, or lost touch with her after those three letters consumed her life will have guilt. Somehow, I just know she wouldn’t want that though. She has found peace. She is no longer trapped inside a body that refuses to move, and the pain is gone.

I lay there for a while longer, staring at Matthew. Do I tell him? Or do I wait?

He must feel me staring at him because he turns his head and opens his eyes. I begin the process of hitting buttons to move wheelchair plates down, and seat positions up, and more buttons for machines that I still hate, the beeping always so loud in my ear.

I sit next to him on the bed.

“Kathy passed away last night.”

Matthew winces. We are both silent. What more can be said? Our eyes fill with tears, but no words are spoken.

Our drive home that day was filled with quiet solitude. There is nothing else that can be done. And that is the hardest part of all.

And our hearts are broken once again…

sharing is caring…

Tonight, I want to share an article that was sent to me recently. It has some good thoughts about the stresses that many of us deal with on a daily basis.

For example…Guilt!

Oh my! I could write a book about just that emotion!

So. Much.Guilt!

I do not understand why there is guilt, but it is there in bucket loads. I am never doing enough, trying hard enough, or just the fact that I feel I am “never enough” is all it comes down to.

I live with guilt that my children are growing up and will remember their stepfather as someone who was dying during their formative years. Worse yet, I feel guilty that they had no choice in this part of their lives, I simply made the decision for them.

I feel guilty if I feel I am neglecting Matthew. I know he is a grown man and can and will tell me when he needs something, but damn if I don’t carry the weight of each decision on my shoulders.

While being a caregiver can never truly be understood until you are actually in those shoes, I feel it is always good to try to find empathy and compassion for those who are in a role that we may find ourselves in one day or simply to offer someone a place to fall apart if necessary.

Really, the world just needs more people to take the time to learn about the plights of others, to hear their stories without judgement and to, at the very least, offer a bit of kindness. At the most, really try to step up for those they can, and offer empathy.

And if you are a caregiver…allow yourself some grace, damnit! It is hard to be selfless and giving and even harder if you are doing it all by yourself. Remember, you are only human, and you are doing the best you can. Some days may not feel like it, but you are worthy, and you don’t need to think years down the road…just breathe, and make it through today<3

I am also sharing this article because I am tired, and my words just are not flowing like they normally do. I decided to let someone else do the talking instead. Yet here I am, still typing…

Ok..read it if you can..I’ll shut up now:)

https://www.caring.com/articles/7-deadly-emotions-of-caregiving?fbclid=IwAR1Jbo1s92zqoUYMDCgoSpVOnmuMlZsmBVGW33OSrnJHFKKux2vJ5yuNeCQ