its the little things this time of year…

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It’s such a small thing really. Insignificant. Not even worth the effort to think about in comparison to how this entire year has gone.

Yet, there it is.

One more chink in the armor. And just one more reason to wonder if life constantly takes instead of gives. 

Maybe this is just the way it goes? 

If I reach down deep in the memory banks, its there. That feeling that comes with nostalgia and reminiscing

The way things used to be.

Such a fleeting memory, fuzzy and hard to grasp at…

It was the early 1980’s. Smoke hung heavy in the air.  Music playing from a  large wooden console, the old-style turntable set into a curio or cabinet of some sort.  Open the cabinets and pull out records or an old photo album.  There were shelves of photo albums, and this is where the overflow of binders were shoved when family needed a place to set their drinks or plates down.

The tree was in the middle of the large window.  Cousins running everywhere, with aunts and uncles talking over the crescendo of the melody.  Grandpa sitting in his favorite chair, scowling and holding his beer, trying to listen in on the various conversations, but the noise simply drowned out the words, so he simply held onto his goatee with his three fingers, tugging repeatedly and looking as if he were deep in contemplation.

The missing fingers were always a source of anxiety for the smaller children.  That and the eye patch.  Grandpa looked like Colonel Sanders, yet instead of smile, he more often wore a frown.  I never did find out what made him so cantankerous, but thankfully, he never scared me.  His blue eye would twinkle when I would run up and hug him and give his cheek a quick kiss before I scampered off, showing off my dress, and I am sure the mud stains that came with a sister trying to keep up with her older brother.  Yet, Grandma… was an angel.  Always soft and gentle, and smiling at the chaos and commotion that were her children. All the babies, toddlers and little ones were drawn to her.  I was no different.

I was often reminded of how I was the baby of the baby of the family.  Somehow, I felt as if that meant I was different…special.  Then again, my grandmother had a way of making you feel as if you were her favorite.  And deep down, I genuinely believed I was.  It never occurred to my young mind that she had the gift of making all of her children, and grandchildren and yes, even her great-grandchildren feel as if they were her favorite.

Of course, clearing away the smoke, and the noise, and looking at the scene from an adult’s perspective, I can see the reality of what probably was.  The adults drinking whiskey, tired from working too hard.  The kids oblivious to the stresses of their parents and showing off their new Christmas treasures.  The smell of beans and stale beer, in a house that I now understand to have been so incredibly small.  Yet, when I was young, it certainly never felt that way.

I felt safe…and warm…and loved.  I felt the excitement of Christmas, and the tree and the family all together.

And that is what seems to be missing this year.

I can’t remember very many Christmas trees or holidays of my youth. Honestly, I think my mom tried for a few years after my father died, but it was never the same.  I can’t blame her for simply giving up after my brother died several years later.  I don’t think I could have faked a cheery holiday either.

But that feeling, the one I felt all those years ago. That’s the feeling I try to recreate every year since I had children of my own. 

As silly as it sounds, it all starts and ends with a real Christmas tree.  Not just any tree will do either.  It has to be a REAL tree.  And there is a strict protocol of how to choose the perfect tree.  I have to smell it!

That’s all really.  It has to be BIG, to the ceiling BIG and fluffy and full… and it has to SMELL like Christmas.  No matter where I am, or what is going on in my life, when the holidays approach, it is the one thing that can pull me into the Christmas mood.

While I love hosting parties and dinners for family and friends, the holidays just don’t feel like they have truly begun until I have taken my three children to hunt down the perfect tree for the year.  They moan and groan about the process, but always seems to be smiling and into by the time we have it picked out.  Although, since my household is not considered a democracy, I always make the final decision about the actual tree we end up bringing home.  In my mind, its only fair.  When they have their own families, they get to create their own traditions. In my household, it is my sniffer that chooses the specific tree.  Through the years, we have tried various techniques of finding the epic tree each year; a tree lot where proceeds help families in need, a tree farm, and yes, one time we even tried to pick a tree from a grocery store (pure blasphemy in my mind!)

So really, in a year like 2020, it is just one more thing to have taken away.

This year, there will be no holiday parties.  No dinners to host, no wine by the fireplace, sitting in the dark and breathing in the scent of the forest, and remembering back to when, for just a moment in my life, I had perfection.

Why am I even sad? It really isn’t supposed to be that big of deal in the whole scheme of things.  After all, his heart was in the right place. Matthew wanted to ease my stress and burden by ordering a fake Christmas tree.  He said it would be easier, and less to worry about.  I grudgingly agreed.  This year has already felt as if it is taking forever to get over.  Why not do things the easy way this time?

I thought it wouldn’t matter.

Don’t get me wrong. Once it was put together, the lights already prearranged, it is a beautiful, large tree.  The kids even argued and fought over the placement of each bulb, just like years past.  But it hasn’t quite been the same.

Christmas is nearly here.  I am trying, really, I am.  I am digging down deep for some sort of Christmas spirit or joy or happiness, but it seems to be farther down than I have ever had to dig before.

Oh, I am sure I will pull it together soon enough.  I doubt the kids will even notice really.  I will slap a smile on my face, and squeal with delight as they unwrap the presents.  I will find gratitude that we have stayed healthy this year.  I will find joy that my children are happy and relatively unscathed by the collateral damage of this never-ending year known as 2020.  I will even be sort of glad I didn’t have to worry about watering the damn tree every couple of days, or the constant sweeping of the needles as the days lead to weeks of dried out dead limbs.

But for now, I just want to be sad.

I want to be sad at the people I have known, some I have met or spoken with and who have since passed this year. I have seldom gotten on social media these last several months, and each time I pop on for a quick moment, I see another friend or acquaintance, a person I never would have known existed if it weren’t for social media….and if it weren’t for ALS…and they are now gone.  I hate the constant reminders, and the constant losses, and the constant feeling of helplessness.

I want to mourn the fact that my children are almost grown, and I don’t have much more time with them before they leave me.  I hate that they will only really remember me as their mother who cared for their step-father who had ALS.  I want them to remember me as loving and fun and a larger than life, full of energy mother who loved them more than they could ever fathom…not someone who was constantly tired. 

I want to wallow in what a crappy year it has been, and while I have so much to still be grateful for, I really just want some good things to happen.  I don’t want to look at the news, or politics anymore. I don’t want to know what side of the divide everyone is on. I don’t want to see the injustices and anger and lies being spewed, and I certainly don’t want to talk about viruses, diseases or death.

And honestly, I just want to be pissed off that I didn’t get a real damn Christmas tree!

It is silly and stupid, and I know it.  And for just a moment, I just want to stomp my foot at the unfairness of life. Of how it constantly chips away and takes the little things.  And it has taken more this year than it has the right to take….not just from me, but from so many others.

It may just be a tree.  And yes, I know it is more than most people get, or will have this year.  I get it. I am beyond grateful at the ability to even be able to buy a fake Christmas tree.

But I need it.

I need it to remind me of the warmth and love that families have, and the memories that can be shared.  I need it to remind me of where I came from.  And what I can still help to create for those around me.

And honestly, I love the way they smell…it brings back happy, and sweet memories of when life was simple and kind. I need more of those memories now more than ever.

So, cheers to 2020…a year of many lessons, trials and tribulations.  May we do better, try harder and love deeper in the coming year.

But till then, I will be over here…pouting about a damn tree…

She has grit…

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She has grit.

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

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

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

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

Instead, I try for reassurances.

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

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

Her voice is strong.

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


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

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

She has grit.

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

Let’s pray it’s enough….

❤ Matthew Wild

Freedom can wait…

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

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

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

This is when I feel it the most.

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

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

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

I am late.

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

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

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

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

And this thought terrifies me…

sorry you had to see that…

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I’m sorry you had to see me like that today.

I try to keep that side of me hidden from the rest of the world. Well, except Matthew. He has seen it a few times. If only I had known you were going to walk in, I would have pulled it together before you saw me. You seemed shocked to see me like that.

Sorry.

It doesn’t happen all the time. Well, actually, that’s not true… it seems to be happening more frequently lately. Maybe it’s the holidays? Maybe it’s my birthday that is fast approaching? Maybe it is all the what if’s, the why’s, or the somedays….Trust me, if I could figure out how to get it under control, I would. I would do anything to numb this…to make it stop…I wish I could make it go away.

I wish I could describe what it is like. It is so strange, especially in the moment. One minute, life is fine and then, before I know it, I am just so angry.  I didn’t mean to let it happen. Sometimes these emotions just seem to overpower me.

Today though…today was different.

I was so tired this morning.

I just wanted to sleep.  Matthew wanted to sit up.  It wasn’t even 6 o’clock in the morning. Then I remembered…the house was a mess and my list of to-do’s is piling higher and higher.  I know, I know…I will always have so much to do, but today….today, it just seemed overwhelming.  My wrists and hands were already aching..and I remembered that it’s a “Shower Day.”

Matthew wants to sits up, but less than ten minutes later, he wants to go back to sleep. I am sorry. I know I shouldn’t be complaining. After all, I can still sit up. He can’t.

I know. This isn’t about me. I am not the one dying….There is no reason for me to be so irritated, right?

Sometimes, with every little need, from him…from my children…from everyone around me, I feel selfish for wanting something for myself. I want to ask what happens to me when I need something? What then?  But I shouldn’t think like that…should I?

I am the one who must get up, take his mask off…then wait till he decides if he wants to go back to sleep or not.

I am the one who has to reach for the cup to give him a drink.

I am the one picks him up and transfers him.

I am the one who helps him use the bathroom.

I am the one who feeds him.

I am the one who covers him when he is cold.

I am the one…

Today wasn’t any different than yesterday. And it won’t be any different than tomorrow.

But today, with each little need, and want or request, and with each thought of what I should get done: the shopping, the cleaning, the errands, the bills, the appointments, the kids, the animals, the cooking, the showering, rearranging the garage, finish the Christmas decorations, the homework….

It just seemed like so much.

And I snapped..

I never said a word. No outward reaction could be seen. But inside, I was seething.

I became so angry.

So angry, that if someone had said something to me in that exact moment…I could see myself going insane!

There was a big possibility that would have seen my face splashed across the newspapers, “Caregiver and wife of man with ALS has gone BESERK! Aggravated Assault and Battery Charges have been filed!”

I laid there, trying to force myself back to sleep. But soon the kids were running through the house, the doors were slamming,.the footsteps were stomping…and then with a quick kiss, they were gone.

Too quiet. Too easy to think, to remember, to analyze, to contemplate, and then over-react.

What was it my therapist told me?

“Anger is really just a mask for sadness and fear. It’s easier and more powerful to feel anger. Imagine when you finally admit what you are really feeling.”

I check with myself.

Yep, that is a whole lotta anger, ready to come pouring out of every cell in my body.

Instead of the rush of endorphins…the rage…instead, I realize…he is right.

I am not angry…I am sad

I am so unbelievably sad, and scared.

And just like that…I begin to cry.

I fall into a million pieces.

I am sorry that you walked in during the part where I was trying to put myself back together.

That probably wasn’t a pretty sight for anyone to have to witness.

It’s okay though.

I spent the day gluing all those cracks and crevices together.

I can’t say that I am back to my usual self.  There were a lot of pieces today.

And I can’t say I am going to sit in the emotion of sadness anytime soon. Apparently, that is a powerful emotion.

Instead, I turned it back into anger.

Anger I can manage.

Anger I can control.

Anyway, I just wanted to tell you I am sorry.  I hate when someone sees that side of me. It feels far too vulnerable, and too much to have to burden someone else with. And I just wanted to apologize for bothering you…

Let’s just pretend this never happened…what do you say?

 

❤ Matthew Wild