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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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!

damn…he is lucky!

He is so damn lucky he married me!

I remind him of this fact several times over the last few days. This trip is something he has been planning for months. Even I don’t think I know all the pit stops and excursions he has been quietly scheming about for hours upon hours.

What started out as a “quick” bucket list drive down the coast on Hwy 101, has somehow turned into some grand adventure of days upon days, seeing everything one could possibly see from the Oregon Coast clear down towards the Mexico border!

He is lucky I love to drive…

He is lucky that the idea of loading up and towing a 9-foot trailer and carting it around with us on this little adventure doesn’t even phase me…

And he is damn lucky that I am up for the task of loading and unloading each and every morning and night all the baggage, medical equipment and crap that goes with taking a wheelchair bound man and two kids on such a monumental task..

But do you want to know the best part?

I am so damn lucky, because he knows how much I love to drive and how much I love when he plans these adventures of ours!

Leaving what I consider the ugliest part of Washington (sorry…but seriously, Spokane is fffuuugly!) and driving southwest…the blue sky feels like a good omen. The gods are smiling down on us, as we left only forty-five minutes behind schedule. As we leave the more populated areas, the road seems to opens up, beckoning me to push the pedal down and glide faster along. I resist the urge.

I glance around. The wind is tickling the grasses, and I say a silent prayer of thanks.

I know how lucky I am to have this opportunity and I can’t help but feel incredibly blessed to have this crazy life. (Please remind of this feeling again because I am sure that after a week with all this responsibility and work and driving…I may not feel so ecstatic to be in this situation!)

Matthew leans over, trying to whisper above the 15-hour long playlist that my daughter has meticulously planned for, and says, “I feel normal when we are driving.”

I bop my head in tune to the music, and also in agreement.

I know exactly how he feels.

I reach over to hold his hand, laying my hand against his palm, my fingers trying to curl around his. His fingers simply lay there. But I enjoy the feeling, regardless that he can no longer squeeze my hand. I am simply content in the moment.

As the volcanoes, tiny specs against a horizon edge closer and closer, we turn onto a road unknown.

Matthew has worked or driven every road and highway throughout all of Washington and most of Oregon, but finally, we have turned onto one he has yet to experience.

He seems pretty content to stare off into the distance, and I am just as content to listen to the music and sing, (off-key and horrible, but no one seems to complain)

The fields are each meticulously groomed, whether the seeds have sprouted into wheat, or the ground has been tilled, ready for the next crop, there is something so satisfying in seeing row upon row, so neatly edged.

For a while, my imagination wonders, and I envision myself sitting on a heavy piece of equipment, tilling my land
.
I quickly shake my head…

Who am I kidding? If I were going to have any other life, of course I would be a truck driver!

Hours have gone by and now those tiny specs have grown into several large peaks, jaggedly reaching towards the clear blue sky. One has just a billow of clouds around its peak, as if they are hugging a friend and are not ready to let go. The road dips and swerves, small towns, each one lagging in what some refer to as “progress” weave in and out with the roads and fields.

The kids are giggling in the back seat, munching on cheese sticks and playing games they packed days before. I keep searching the rear-view mirror. Their faces so perfect, my heart aches.

Every so often, my daughter checks her watch. She is counting backwards. She thinks we are going straight towards Arizona. I keep reminding her we have at least a twenty-hour drive, yet in reality, we are just a few hours from our first stop

– Crater Lake.

Even I am having a difficult time keeping the secret!!!

As we near our first stop for the night,a small town outside of Bend, I notice the farmers have been busy stacking and compacting the hay into perfect little squares. I can’t help but feel they are artists, cutting their designs into the earth. Even Peyton agrees, as her face glances out and she sees the same thing Matthew and I are staring at.

In perfect arches, each square bale of hay is perfect placed along its path, each one exactly the same distance apart.

“That is so satisfying for my OCD!” she says, with a grin spread across her face.

We all burst out laughing…she is definitely my daughter!
For several hours today, we were normal.

A family, taking a vacation. Laughter and giggles, and jokes and bad singing to Queen and Elton John…( my daughter did a great job on that playlist!)

And as I lay here, my fingers playing against the keys of this old computer, with the sound of small snores mixed with breathing machines and fans…I am content.

Damn he is lucky he married me!

I’ll be sure to remind him in the morning…

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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:)