Going home…

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

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.

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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…

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“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…

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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.