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

waiting…

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He held the phone up to his ear and waited.

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

Neurologist

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

Neurologist

He waited.

The music stopped, and a soft voice said,

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

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

He waited.

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

A.L.S.

He waited.

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

He waited.

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

He waited for the realization to finally set in.

He was dying…

Weeks went by.

He waited.

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

He waited.

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

He waited.

He waited to speak to the funeral director.

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

The months dragged on.

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

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

A final trip with the family to Disneyland.

He found himself waiting once again.

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

He waited.

*********

Dying is not an easy feat.

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

He waited to be showered.

He waited to be fed.

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

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

He waited.

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

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

He found himself lost in his own thoughts.

How many times in his life did he wait?

He put off vacations to work longer and harder.

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

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

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

He felt tears of shame and guilt.

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

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

They spent their lives waiting for him.

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

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

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

It was time.

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

He waited.

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

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

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

He waited.

Listening as his body slowly stopped its fight for life.

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

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

It was time to go.

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

He let go.

a man and his dog…

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

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

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

I did notice him.

I walked towards him.

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

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

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

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

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

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

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

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

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

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

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

No Loitering Allowed!

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

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

His name is Joe.

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

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

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

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

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

I agree with him.

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

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

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

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

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

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

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

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

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

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

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

We are all worthy of being noticed…

 Matthew Wild

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?”

San Fran or Bust!

ALS Fact of the Day~

San Francisco or Bust!

Inverness, CA is solitude and beauty and quiet in a way that I have not experienced in years.  I want more, but I will be content with the few minutes I was able to enjoy before I was needed by the tiny travelers and the big guy. There is a part of me that could stay here forever, watching the tide ebb and flow with the seasons.  I must admit, the food and the local market leave much to be desired, but seriously…when was the last time you sat outside and listened to absolute quiet?  Just the gentle lapping of waves as they caress the shore.  No cars, no loud brakes or honking or engines revving.  It was peaceful.  I desperately want to come back someday.

Check out time is noon, which should give me enough time to shower Matthew, clean out the van and get re-packed.  The entire process should only take me a couple hours, but the kids are happy to watch a movie, and Matthew is laying back resting. And I don’t want to be the drill sergeant ruining the peaceful setting. So I wait…almost patiently.

The night before, I had tried to lay Matthew on the bed, with pillows all around, under his head, his arms and legs.  However, sometime in the middle of the night, the pain was too much.  So, once again, I get up, trying desperately not to wake the kids as I grab the lift and put him back in his chair.  His knees and hips are hurting, regardless of what position he is in lately, so it means a lot of moving, and stretching and trying new ways to make an impossible situation bearable.

Finally!  At 12:00 pm, we load up and are ready to hit the road.  Everyone is in good spirits once again, and I suggest we get gas and a good meal before we attempt anymore of Hwy 1.  Our navigator thinks it would be better to get down the road a bit more. ( I silently disagree with his assessment, but I let him make the decisions, as he is the one who planned all of this!)

So begins the swerving, and curving..the topsy-turving.  In and out, and all around, we roll from side to side.  The kids begin complaining of headaches, and belly aches.  My arm hurts from holding Matthew steady.  Still, he wants to move onward.

Where the redwoods stood tall and proud behind us, the trees that come around the bend are different.  The only way to explain them is as if you were to take all the different kinds of trees from across the land, and then toss them haphazardly across the landscape.  There are trees that are leafy, that reach over across the highway to touch the fingers of the trees of their lovers across the road. It was almost as if they couldn’t bare to be apart, and even the simplest of touches would have to suffice.

The next trees were lined up, one-by-one, along the road, in an almost military style, as if they were saluting the cars as they passed by, standing proud and strong at attention.  Next were the trees that were a bit too lazy to make the effort to create strong branches. Instead, they had vines and moss that were hanging from limb to limb, as if with a small smile and a happy gesture to say welcome, but they were not going to offer any shade.

We were down to an eighth of a tank of gas again, and everyone was getting hangry. I have such happy memories of S.F. and I can’t wait to show them the sights!  But, my anxiety at letting the gas gauge get that low, and the kids are noisily munching on the last of the bags of baked chips and popcorn.

Matthew keeps repeating, “Its about the journey, not the destination.”

I know!

But I really want to get to our hotel room and then explore and it is already 2:00 pm.

We see the Golden Gate Bridge. I reroute us so we can get closer, but hauling a trailer behind us is proving to be difficult in a tourist hot spot.

We agree getting to the room and then coming back would be better.  I am getting antsy. I don’t want to be in the van anymore! I want to be out, walking around and seeing things!

We navigate our way through the back streets towards the Fisherman’s Wharf.  Only one problem…. The valet won’t take a vehicle with a trailer.

I have the kids unload everything, and I have them all go in and check in and get things to the room while I navigate the parking arrangement.

Each parking lot within a four-block radius refuses to let me in.

It is so bad, in fact, that they come running and won’t let me even enter.  They yell at me that I can’t park there, and they send me on my way.  One man glares at me, putting his body between the barrier and my can. All I can do is ask as politely as possible, and know that the prison system in California frowns against running over people for no reason. So I smile and back out into honking traffic.  Each place looks at me as if I have two heads for even attempting to bring a trailer downtown.

There was a moment, when one of the garage attendants was telling me to go away, that I almost started to cry.  It was close, but since I only cry when I am truly desperate, I backed that trailer up, in the middle of rush hour traffic like a true Mountain Woman, and short of telling him to piss off, I drove away with my head held high.

Until I parked and went into the hotel and saw their faces.

The kids were so sad.

I don’t know what is worse. The fact that they were ecstatic over the size of the large bathroom, so I would be able to help Matthew, and we had to leave, or the fact that they had to go back up to the room and load it all back up, while I brought the van and trailer around.

People are often unaware of what it takes to find accessible locations. I can’t say it was ever anything I ever would have considered during my life before ALS.  But, now, it is constant. I look at stairs, and steps, and dips and holes, I am constantly navigating and judging if it is something we can do.  Most times, we are unable to venture out to the highlighted attractions simply because Matthew lacks legs that can take him up or down a few steps.

I refuse to let this ruin our day.

I pull the kids off to the side of the trailer after we have loaded it back up again.  The damn valets and hotel guests can take a flying leap as far as I am concerned.

I kneel down, and I hug each of them and I tell them how much I love them and how proud of them I am.  Not once did they complain or become rude.  They did what was asked of them, even when they were disappointed. Not many kids could hold it together as well as they have today.  I told them that things weren’t always going to go as planned, but that we could only do the best we could do and go from there.

So off we were, once again.  A hotel booked about an hour south from here.  With the idea we would return in the morning.

I don’t know if I should thank San Francisco for permanently scarring my children to the effects of drugs and prostitution, but they got a pretty good idea of what it leads to.  As our safari bus tried to make its way out of the city, we went from light to light, witnessing drug deals, people literally leaning against the building to use the restroom…and I don’t mean #1!  There were people talking to themselves, and people dressed up in various outfits.  I tried to explain that some people were not given the same chances or advantages that others are given, and others become broken through a lifetime of bad choices.

They seemed oblivious to the seriousness of what was happening around them, and as we went up the steep embankments and then down again, I couldn’t help but laugh so hard I was snorting.  The kids were freaking out at the almost 70-degree incline (so not joking here!) and I was literally trying not to crash as I help with one arm to keep Matthew from slamming his head into the dashboard on the way back down.  Brakes are good!  I know, because I was on them for quite a while!

But alls well, that ends well.  I managed to drive us through the city and to our hotel in San Mateo, where they are above and beyond accommodating!

We have hotels figured out for the next six days, and now we will attempt to see San Francisco once again..this time without a trailer in tow, as we will be leaving it behind to navigate a bit easier!

Some important life lessens here:

  1. Don’t do Drugs! They do scramble your brains!
  2. Don’t use the bathroom on the main thoroughfare..at least go the alleyway!
  3. Even when people are assholes, try not to lose your patience. They are only doing their job
  4. NEVER! I repeat…NEVER! Attempt to take a trailer into the city…EVER!!!!

 

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sharing is caring…

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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:)
 
 

slowly, they all just disappeared…

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You didn’t think it would happen. Not to you. You had it all. You had a loving and supportive family. Siblings and cousins you saw or talked to almost every day. You had friends. Friends who grew up right down the street from you, buddies who had gone through thick and thin with you.

Slowly, so slowly at first, it seemed almost as if you might be imagining it all.

First, the words of condolences.

“I am so sorry you are going through this.”

“I heard about the diagnosis. I am so sorry.”

Next, they see you out and about, but instead of the happy greeting you would normally get, they avert their eyes. You sort of stop. Unsure of how to proceed. You see them look away. You clearly make them uncomfortable now. They are hoping you don’t call out or draw attention to them. They duck, they turn away, they do anything to avoid having to face you.

It seems awkward at first. You take it personally. You feel as if you have inconvenienced them in some way, but you aren’t sure how.. After a while, it becomes such a common occurrence, you do them the courtesy of simply not even looking in their direction.

The pain is less sharp with every ripped page of a calendar month. It seems that time has a way of helping you adapt. You adapt to the loss of mobility. You adapt to losing your independence. You adapt to losing camaraderie with co-workers you used to see daily. You simply adapt to losing something, each and every day.

You think you have managed to come to terms with all the changes, but then you realize that the changes never stop.
After your body has morphed into something you no longer recognize, and you only slightly look like the person you used to be, you must now adapt to a new challenge. The friends and family you hold so dear. have all just slowly dropped out of sight. You had no idea that this is the part that would test you.

You thought dealing with the disease would be the hardest thing you would ever have to deal with, but you discovered you were wrong.

The hardest part, in fact, would be watching everyone around that you love move on with their lives, and all you can do is stare at a screen and watch it all happen.

You do everything in your power not to click on that icon, you try so hard to stay away from social media.

You don’t need to be reminded of all the Christmas parties, the weddings or the birthday celebrations that you are no longer invited to.

You don’t get to be included in the phone calls, or the invites for a drink to commiserate a friend’s breakup or loss of their favorite sport teams championship game.

The connection is gone.

Funny that you didn’t notice at first. You were so focused on the loss of your legs, you hadn’t noticed that those friends who used to talk to you every day, haven’t reached out in almost a year now. No one has stopped by to visit in so long, and you don’t even bother asking for visitors. They all promised, but its been so long, you finally quit anticipating anyone knocking on the door.

The invitations you had gotten were either to someplace that cannot accommodate your new situation, or it was a pity invitation. At least, you assume it is a pity invitation, so you politely decline. You feel you have done everyone a favor by not going.

You thought the disease would be what caused your body to stop functioning. Now, you no longer believe that. Your heart is breaking, and you begin to imagine that it is possible to die from a broken heart.

If you had only known the disease would not be the hardest part to deal with. You found out the most difficult part of each day would be to live and then die from isolation, depression and sadness. The ability to see all those people you once had a connection with, posting pictures of their lives, their loves, and their ups and downs, but you somehow, realize that you were forgotten.

You want to turn away, but you so desperately need to feel as if you are still worthy of their time or effort.
Now, you scour the internet, Facebook, Instagram, Twitter…anything that connects you in some way to the people you used to know. The anger is gone. Now, you simply want a connection with them. Even if the only link to them again is by pressing the “like” button.