Tag: Spouse of a Leukemia Patient

I’m seeing ghosts..

theycallmebetty4 Comments

Making my way through town I have always seen ghosts. Ghosts of incidents past rattling through my brain like an unwanted house guest! You know, wearing your wife’s robe and your slippers while they drink what’s left of the milk you needed for your morning cereal.  I have written about “them” these ghosts before, remnants of some of the worst things I have seen or participated in during my career. Who they were or are, how they have affected my current reality, and my inability to let them stay, well quite simply “dead”.

Last night I went to Vacaville to pick up tickets for a popular movie two hours early so the kids and I could go see it. Now if you know me well enough, then no need to ponder the movie. The answer is elementary.

Arriving at the theater, it is very obvious the movies are the place to be after Christmas, as the lot was full and I needed to park a block away. Walking up to order tickets a very polite young man behind the glass informed me they were in fact sold out for the night. Hands in my pockets while retreating to my car I heard a couple talking about heading to Winco after the movies.

Then it began.

I looked across the freeway, Winco hides on the other side and it dawned on me that Thursday was our Winco night. I could see her walking through the aisles, grabbing things and placing them close to her face so she could make them out, never ever wanting help unless she absolutely needed it because that tore away at her independence. We would slowly make our way from aisle to aisle and I remember that as much as I hated shopping ( I am a speed shopper, I know what I need and I haul ass outta there) watching the wonderment she held to each and every item she placed near her face always made me smile. It was like watching a child, or someone who had been in a coma for 30 years and just couldn’t believe all the amazing things that now existed! Winco was always a 2 hour affair and at that very moment I couldn’t believe how much I longed to go shopping with my frail, blind wife, spending those two hours together making our way up and down each and every aisle while she beamed with delight, thanking me over and over again for taking her.

UGH!

Vowing to never take another step inside Winco, I slid into the seat of my car and texted the kids; the movie is a no go, sold out, headed home. Then as I got on the freeway and began passing the Nut Tree area it was as if every single place we ever visited from the beginning of our marriage had a giant neon sign over the top of it flashing, brightly screaming that we had fun over there, we had date night right here, do you remember the time that this happened in this street and how you both rolled around laughing for hours!!! I tried to take it as good memories, something I should be so happy about, but instead it just created a bigger void, a tunnel of darkness that began enveloping me from the inside out! I couldn’t drive fast enough to get away, the signs wouldn’t stop flashing, I started breathing really hard and my chest hurt, I began sweating and I couldn’t focus.

Then out of nowhere!

That’s right out of nowhere I found myself in the Kaiser Hospital parking lot. I was parked in my normal spot. Yeah after you have been there a while you kind of pick a row and park there out of habit. Walking towards the building I had my hoodie pulled tightly down over my brow. I must have looked like the grim reaper as I made my way into the building. Stopping at the pharmacy I stared inside for a few minutes, reciting her medical record number then turning to make my way to the fourth floor. Exiting the stairwell I walked slowly down the hall, talking to her as I always had about how long she would be, did she want me to stay, cause I would stay and watch tv with her, should I go and get chores done, is there anything she needed me to pick up for her in Vacaville? All the right questions, praying I would hear an answer. Knowing there was none to be had.

Oncology, I stood in the threshold for a minute or two, still not quite understanding why I was there; then seeing the television was still on I sat down in the same chair I would always inhabit.

And there it was, right there for me to feel, my wife.

It was as if Jacy was sitting in her wheelchair right alongside me, I could feel her, she was talking to me, we had a long conversation about meds, her health and what lay in store. I eventually snapped from the same old topics we discussed and told her how much I missed her, how very lonely I am, how she was the very best thing that ever happened in my life and I don’t like not knowing what is in store for us without her. I told her I loved her so much and how I missed the touch of her hand. I asked her if she was ok. She just smiled, looking at me with her big beautiful eyes and said it was time to go. I asked her to please not go, don’t leave me again, she said; James, its time for my treatment and turned towards the door. She was gone.

And just like that I was back, alone in the very waiting room I had spent countless hours watching other people struggle with cancer while we were waiting for treatment.  

Walking down the hallway towards the stairwell, again slowly, hands in my pockets, hoodie still pulled down tight I felt heavy. No wheel chair to push, no bags to carry, no oxygen bottle to adjust, no wife whose shoulders needed rubbing, no best friend to reassure this was temporary, she wasn’t going to die, she was Jacy Franceschi, the toughest, most badass woman I have ever known and no amount of drugs or disease could possibly kill her.

I lied.

You can’t possibly know how that feels. To have lied.

She knew the risks, she knew what the outcome could be, she knew it all and she did her best each and every day for her family.

I still lied because I loved her.

I see ghosts everywhere I go, they don’t prepare you for that when you become a firefighter, but over time you develop the coping skills to understand it, to deal with it, to accept it when they arise.

No one can prepare you for the ghost being the one you loved more than anything on this earth.

No one….

Two months

theycallmebetty4 Comments

Coming down the stairs every morning I have come to realize that about the time I hit the coffee pot I am no longer looking into jacy’s room, no longer searching for her or wondering why I haven’t heard her voice speaking my name.

That’s right, apparently I have gotten used to Jacy not being here, waiting patiently for me to have coffee with her while listening to the plethora of ideas she’d come up with during the night. I miss that, I really do miss hearing all her crazy ideas as I try my best to focus and sip that oh so important first cup of jo. The emptiness is very real.

Then I began to feel bad. Really bad..

Had 17 years of togetherness just disappeared in two months? I mean it will have been two months tomorrow since she passed away. Two long, lonely and I mean so fucking lonely months without my best friend. I am listening to recordings she made just so I can hear her voice. Sometimes it is what I need, other times it is an emotional train wreck and then there are times I talk back to it, hoping she can respond, even though I know she can’t.

I know the answer so don’t bother telling me and nothing has changed so whatever. If anything, absence has made the heart grow even fonder if that is even fathomable. But man, what a thing to live with an absence that can never be filled. Working on my book has left me reliving every single moment from the last five years and with that comes tons of tears. I promised her I would take care of her, I promised her I would look out for her, she trusted me so much and I was the voice she wanted to hear when things went south. Reliving the times she cried and wanted to quit, the times she cried and told me she was fighting for me, for us, for our family, the times she would call me sobbing that it was more than she could take and then it two seconds she would swallow it down and put on a positive face for whoever was walking through the hospital room door. Some days it is more than a man can take.

After reading the last five years over and over and over again, even though it hurts like hell, and nonetheless it would be easy to blame myself for not doing a good enough job. I do know I James Franceschi, her husband kept my word. I know that with every fiber of my being! I loved that woman with my whole heart, I stood by her side and I did the very best I could have done under the circumstances. I am so glad I chronicled the entire journey as without it being time stamped and dated, without precise recollections written down in the moment, it would be so easy for me to continue beating up on myself for the last 5 or 6 months when things became the hardest, and I have, but now I am not. Well I am not as much as I was previously.

When I do its over simple things that anyone or at least I think anyone in the same situation would second guess themselves for, like; I should have carried her upstairs that last month when she told me it was her sole dream to sleep in our bed again. I was terrified to for many reasons and I won’t get into them here but suffice it to say the stairs alone at my house would have killed us both. I still wish I had said I love you a hundred more times, and even if I had I would wish for a hundred more, it was the least I could have done for this amazing woman I was lucky enough to call my wife.  I still wish I wasn’t so tired all the time, that I had super human strength so I could have been more patient during the last 30 days. But even with all of that, the one thing I know beyond a shadow of a doubt is that I did the very best I could. I loved her with all of my heart and I never gave up on her. EVER! This woman was my angel, she was my everything, my best friend and it is so very quiet here without her in this house, on this ranch.

They say it’s till death do us part. Huh? What am I supposed to do with that? Should I just chuck my ring as if nothing ever happened?  My love for her is strong and my wedding ring is still planted firmly on my hand. I am not sure that’s right, I’m not sure what I am supposed to do or how I am supposed to do it. You think I would after playing this horrible game once before, but I don’t!! I guess I’ll figure it out as I go, but I sure wish she was here to help me along with good advice, hugs and a smile.

I wonder if this world we live in is really the hell we all know or have been taught to know. As if there is no fiery hole where the damned retire. No sir! It is here, out in the open and we are living in it! Because this is our reality we all need to earn our way into heaven through actions and deeds, but we must suffer first the way Jesus suffered for our sins. How else do explain all the good people who die and the world is filled with what remains? Anyone?

The thing is, I know I have been blessed. I feel her with me, by my side, and at the weirdest of times. I feel her heart pumping inside mine and can smell her perfume coming from nowhere. I am pretty sure she was needed elsewhere, and I know in true Jacy fashion she is running the show, making everyone laugh and showing you just how special you really are or need to believe that you can become. That was her gift to us all. It definitely was the greatest gift she ever gave me besides our family.

I just selfishly wish she was still with me, radiating her warmth in our room, the one I no longer look into out of habit, because it is cold and so very quiet. So very quiet indeed……

I have become afraid.

theycallmebetty2 Comments

I over think things, I really do. I try my hardest not too, but I am the guy who lays in bed all night long thinking, and thinking, and thinking, until I pass out! Of course then I wake up in the morning and start thinking about whatever the hell it is I was thinking about before I went to bed and thus the process starts all over again! Phew, I had to think about that for a minute..

So here is my problem.

When I think about Jacy, most of the time I no longer see her in my mind sick, in pain and getting weaker by the day. My brain for some reason has me grieving our life prior to Leukemia. You know, she is a mom, I am a doting husband, we date twice a week, have rodeo, Criners arena, Sugarland and lots of bbq’s with friends. Also on the flip side my brain is inundating me with Stanford visits and Kaiser Hospital runs/rituals acquired over the last 5 years. So that seems pretty confusing doesn’t it?

Let me rephrase or clarify the upper statement.

It has come to my attention that if I am in a crowd, or shopping, or any place there are people, I begin remembering moments from another time and Jacy being with me, or have memories of us doing things together in conjunction with “whatever” activity I am participating. She is healthy, and so damn beautiful and it crushes whatever spirit I had towards the activity I am trying my hardest to participate in! I begin looking for her desperately in the eyes of every woman that passes by me, every woman with her back to me, I search and search and I can’t find her in the crowd so my heart rate goes up, then I can’t breathe, I am afraid and just when things seem like they couldn’t get any worse they do! I find myself running for cover trying to hide so no one can see I am falling apart on the inside! Then it just happens, and I can’t stop it! I cry.

Crying is absolutely ok. I am rational enough to know that, but I don’t want the attention. I simply want to do so without anyone checking on me and when you are in a large crowd with nowhere to hide that simply is not possible. So I try swallowing it down, hard, which just makes it worse. Because as the tide comes and goes, if the waves are held back to long eventually one massive wave will break onto the shore.

Yeah picture that! So fun.

My face hurts, my chest hurts, I swear my heart is going to explode, I start sweating, I can’t breathe and then it happens, over and over again, her face flashes, events flash, her smile, her kiss, her hand in mine, I can’t fucking take it!!! I can’t see her and my head starts spinning!! Then just like that, it’s gone. She is gone and it’s like someone lifted it all off my shoulders, until something else sets it off and it starts all over again.

I went to Nevada City today to celebrate Christmas with my son since I really haven’t been feeling it at all. I was excited, he was excited; we walked past the entry sign and into the crowd. The deeper we went I felt the tightening in my chest. I began searching. For her…

Parker shopped away as one woman after another passed me and although no one even remotely looked like my wife there was something, some kind of resemblance; a dress, the shoes, the way she walked, a smile. Stupid really, but it only furthered my need to find Jacy! I become irrational, saying things to myself like; She would have loved this place, the smells, the people, oh my, she would have been talking to every stranger she could in every shop or booth! I knew she just simply had to be there! She couldn’t be dead there is no way my wife, the strongest fucking person I have ever known could be FUCKING DEAD!!! WHAT THE FUCK!!!!

Turning the corner looking for a place to run and there in the window of a shop is a pair of shoes. Not just any pair of shoes, but clogs, her favorite and they were decorated and colored and she would have loved them and I would have bought them for her for Christmas because we loved Christmas, and church and Christmas eve pajamas and snow balling our friends and FUCK, FUCK, FUCKITY, FUCK!!!!

But see it doesn’t get better either.

The second part is when I am driving. That’s when I run through five years of hospital rituals, three years of Stanford Hospital rituals. Sneaking her hamburgers when she wasn’t supposed to eat them. Playing words with friends for hours, watching Survivor, quite literally ever single season-twice. Spending all those moments together with machines beeping and nurses coming and going and holding her hand through it all. Listening intently and calming her down as she tells me to please murder the next nurse that puts her on bed alarm! Telling her I loved her a hundred million times, not because I had too, or was afraid she wouldn’t know but because I wanted too. The way when you are first in love and you say those words it feels magical. Yeah like that, every time. Even when things weren’t going well. That’s the way it felt for me. I haven’t heard those words back for 50 days now. It is killing me inside.

I had to go to Kaiser the other day for me. It took me 15 minutes to get out of the truck and go inside. I even parked in the wrong place because I was on auto pilot. Once inside I wanted to run away. I never want to be inside that building again. Either of them. It’s irrational and I know I am going to need to get over it but I can’t right now. Every corner I see her, in a wheel chair, waiting for me to push her into an elevator. Or sitting around the corner waiting for a blood draw. I see the same faces of the same ladies working at reception who helped her and I pray no one makes eye contact with me. I know they won’t know who I am, but if they look at me I will feel like I am supposed to walk up and say; hi good morning, yes Jacy Franceschi at 10:30-04039018. Thanks yes I know where the paperwork goes.

If I drive towards the city it’s all I can do not to head towards Stanford. Again partly on auto pilot and partly because I still feel like she is there and this is all one big misunderstanding! There is no way she is gone, there is no way she is dead; there is no way she is in this wood box sitting behind me! The summation of her physical being bound into a bag with a copper tag and number that have the earrings she was wearing taped to it! There is just no way!!! They said it was a 10/10 match!!! She had the very best odds. They said that, I heard it!! They said she was going to live and there was only the slightest of chances things could go wrong! I heard that too!!!! They fucking said it!!!

I want someone to wake me from this horrible dream. PLEASE!!!!

Listen, I know they said a ton of other things as well, but it is just where I am right now. I don’t blame them, everyone was amazing to us and our family.

I just want my wife back! Can I go to heaven just for the day? (yeah like the song) Just so I can make sure she is ok? It was my job for so long it just feels so unfinished, and yet that is exactly what it has become. Just a day so I can come back and take care of the kids knowing she is all right. That’s all I ask..

Oh well, I guess I will just have to assume.

Listen, I know it will get easier over time. I don’t know how long that is going to be and really I don’t care. I loved her for 17 years, she was my very best friend and I will love her still, no matter where life takes me. I will never quit loving her, or the memory of her, I just wish for a while, I could turn my brain off and quit being afraid.

A Little Christmas message..

theycallmebetty8 Comments

Christmas has always been my favorite holiday of the year.Lights, trees, church, love, family and all the wonders that come with celebration.

Over the last five years we have struggled to make it the very best Christmas we can. Some years we did a stellar and I mean a flat out,old college try, jaw dropping successful experiment in making things work bringing love and joy into an otherwise really shitty situation! Then other times we just muddled through taking selfies and tons of family pics simply to prove we did our very best.

In the long run or the end game as it were, this did turn into a blessing as we have some sense of just how much we all loved Jacy and our family through this hell we were living. Don’t get me wrong, we knew just how much we loved everyone, and know it to this day. I genuinely love every one of our families to no end! But trying, even when you don’t want to and it feels just wrong is 100% the right thing to do.

 So here we are, December 5, 2018, 47 days since my sweet Jacy left us to be with God.

Guess what?

I don’t want too.

Yup, that’s right, my favorite holiday and I simply don’t want too. I am trying my hardest to find the joy in this moment. I made it through Thanksgiving which is by far not one of my favorite holidays, but I just don’t feel it.

Parker got out the fake tree last night. We always put up a fake tree right away in the room where the wood stove is in so you can see it when you come downstairs in the morning. He drug out all the ornaments and put up the lights. I was proud of him for taking the lead and I told him so. I chose to put my feelings aside and help him, because as his father, regardless of my personal feelings I need to set an example and I know that for the same reason I don’t want it, he really does.

While we dug around in the closet for the “cheap” ornaments that go on the fake tree. I knocked a shelf and a hat box fell onto my head. It burst open and inside was every single love letter I had ever written my wife.I had no idea she had kept them all. I knew of several hat boxes and their contents, but this one I hadn’t seen. I stood jaw open as I picked them up carefully and started to read them to myself.

By the end of it, an hour had gone by, I was balling again as my heart poured out to my wife within the confines of those pages. One of them had her lipstick on the bottom as though she had kissed it after reading it.

What she never knew was I kept every letter she ever wrote tome. My favorite being a single page left under her pillow for me to find (she knew I would because I make the bed every morning) after she left for Haiti on her first trip. I read them all, the cards too. I saved the one from Haiti for the end.

I cried some more.

Now this is where you think I probably went into a very deep and dark rabbit hole. Oh I am sad, so very sad but not for what you think.

You see I believe she was there and knocked that box on top of me. I believe she needed me to see it, to feel it and to put her letters and mine together to better help me understand that although I am alone now, this love was never as one sided as it feels without her here. I believe she was telling me in her own way to not be sad for what’s lost but cry tears of joy for what we had together. I know this because that is exactly what she wanted.

I cannot believe a guy like me was able to have a woman like her. She was my best friend in the whole world. How lucky was I to not only be married to an amazing human being, a kind giving soul, but someone who was not only the absolute love of my life brought together by God, but my very best friend as well! What we shared, I only wish everyone could feel that, to hold that, to grasp it tight and realize that you are indeed the lucky one!

I put them all away. I cried for a very long time because I do miss her so, so much! I do feel as though I still can’t do this without her but I know I will, it is just who I am and I know it’s one of the many reasons she loved and believed in me. I just need to believe in myself and that will come with time.

I am going to do my best to make Christmas happy, or as happy as it can be for our family. I will carry forward our love, it will suck Christmas morning as there was no mom happier than her watching her children tear apart gifts and laugh together.

I will try. I promise.

Jacy if you have anything else hidden that you need me to find, could you please wait until after the first of the year? I am pretty dehydrated from crying so damn much..

Thanks, I love you…

Choices

theycallmebetty5 Comments

You know the funny thing about being a living breathing human being?

You and you alone have a choice. That’s right ladies and gentlemen, believe it or not you have a choice in everything you do, say, the way you react or don’t react to life.

Choice is powerful, we have the freedom of choice and how we wield that choice. I am thankful for that because it means as a human being I am allowed to choose which direction I go in any situation, including the precarious emotional moments I am currently living.

Right now, I have chosen sadness as my course. You heard me right, I have chosen to allow sadness into my life. To not meet the male dominated pre-requisite that we all understand to be a norm but is instead a gigantic falsehood of life; and that is to swallow it down, hiding from the sting of losing quite possibly the one person on this earth who will ever love me for who I am, who I was and who she always thought I could become. That statement alone as its read, and I recall all the times she looked me in the eyes, told me she loved me or was proud of who I had become, creates a surge of sadness that forms deep in my chest and moves like a wave towards my outer being. Who will do that? Who will be proud of me? Who will I champion for in the future, who has my back and loves me unconditionally? Who? And don’t say my children because;

1-that’s a given and

2-that is not what I am referencing here. It’s about the relationship built between you and your spouse..

My son texted me the other day, he wanted to know what I was doing, how I was feeling and our texting conversation ended with; I am feeling down. When prompted as to what was happening he replied; I just need to talk to mom. I replied: is there anything I can do? His response: No I just want to talk to mom about shit….. (in his vernacular “shit” means life)

Yeah; let that sit for a moment. Pardon my bluntness but you’re an asshole if that doesn’t tear you up inside just a little. Anyone who was close to their mom and has lost that person knows exactly how my son is feeling. Sad, alone, the boy inside of him simply needed his mommy. To hear her voice, to laugh together at stupid stuff, to hear I love you son at the end of the conversation. Fuck you Leukemia, fuck you GvHD, I hate you all to hell!

But even though those moments come and go, and even though each day that void widens I choose to keep going, to move forward, and to act in a manner that is respectful to both myself and my family. To set an example for our children. Our lives still need to be lived, there is so much out there to accomplish when it comes to our lives and the lives of others. We still have a choice.

Jacy has none of those choices. She didn’t choose this as her destiny. She can no longer choose an alternate outcome or make decisions based upon her feelings. She can no longer do anything from the confines of the handmade box sitting behind me on the table with her picture hovering over the top.

On the flip side though, Jacy did choose as a living, breathing human being exactly how she would exit this earth. She made it very clear what her expectations where and how we as the ones she loved and cherished most would handle that task. She did not want to go, even though her faith was strong, she wasn’t ready, she screamed she wasn’t ready, she felt as though there was so much left for her to do! In the end she was mad at God for stripping her of her family, something she had always wanted, but knew it was time and was welcoming the thought of heaven.

I am trying my hardest to honor her requests, and I will continue to do so until my very last breath. Why? Because I loved her unconditionally the same way she loved me. Because I made a promise to her 17 years ago, 5 years ago and two months ago! I always keep my promises. She was the center of my universe and even though she is gone I will cherish every single moment we spent together in memory over all those years.

I have no doubt as time rolls forward, our lives will change, priorities will change, and the look of our family will change. But her name, her memory and what she hoped for will not change as I will carry that forward with her in my heart and right by my side in spirit. It was and is my choice.

So what exactly is my point?

When the time comes and darkness hits your family, who are you going to become?  There is no reason to face it alone, because you don’t have too. As I have stated many times over the last five years, I started sharing our story because I didn’t want other spouses, partners or family members to feel alone. Like it was them against the world. I really wanted them to have a voice, a place to speak out, to read, understand and reach forward to someone such as myself who was open and accepting while painfully walking that walk.

Now our journey has ended and I am beginning a new journey forward, as one instead of two. It is scary as hell, I am worried for the future of this family, and the one person who understood me is no longer here to help guide me. But I am not alone.

You don’t ever need to be alone either! You know why?

Because you have a choice.

Sorrow is a bird…

theycallmebetty6 Comments

Let me preface today’s writings with a statement: I promised my wife I would keep writing, telling the truth and never masking it or watering it down for the sake of others and that if our story and struggle could help just one person understand they are not alone then we have done our job. Well the “we” has turned to me. Just me and it is daunting to be a me, not a we. So please share/like/subscribe to this blog share our story with everyone you know, because if many can be reached, then maybe the “me” can become a “we” again.

“Sorrow is a bird that sits in the rain. Hunkered down on a branch you see it from the comfort of your window. You think; how sad, that bird is cold and rain soaked beyond its feathers there must be something I can do. But there is nothing you can do, for you cannot help the bird because the bird knows what its up against and understands it must deal with what life has thrown it’s way. There is nothing you can say, for doing so may cause it to panic, flying deeper into the storm, you simply must watch painfully as the sky rains down upon it. For a time the bird must remain sorrowful.”

~Betty~

I am currently drowning in a sea of sorrow and tears.

The darkness in my heart holds me down under its weight. Each day it is becoming harder and harder to leave the house for any reason.

Everywhere I turn I see her face, each place in town or a restaurant or the grocery store or, or, or it never ends. Look there is a grey Honda Odyssey in the parking lot, maybe she is inside and I can surprise her? You never realize just how many grey Honda’s there are out there until you drop kids off at school. You also don’t realize how fast after the one you love is gone, free from all the pain and suffering that your mind takes you back and leaves you with images pre-Leukemia.

There is no reason she would be parked here at the grocery store with the Honda. She hadn’t driven in over 3 years. But that is the crazy game your mind plays with you. It sucks! It really sucks and it hurts a lot!

Lately my mind has been playing the cruelest trick of all. Reminding me or telling me how inadequate I really was and how much better I could or should have been.

Over the last few months, I had really hit bottom when it came to caring for myself. No sleep as it took all night to care for my wife and during the day I had children, ranch and pick up/drop off duties. Plus all the house chores with cooking and cleaning. Of course then there was doctor’s appointments, shuffling her to her dads, oh yeah and then for 48 hours a week I was a kind, caring firefighter for the citizens of our little community. I really was a real life walking zombie.

I found every excuse I could to stay away a few minutes longer when I got out of the house, (I rarely left her alone and only left when she was lucid) to get a break from wet beds, pee on the floor, picking her up because she was suffocating herself in her sleep due to the high number of drugs she was taking. Listening to her tell the same story over and over again as I simply nodded my head while coldly scrolling through my phone because I knew she couldn’t see me due to her GvHD induced blindness. I hate myself for that, I hate myself for every minute I spent away from best friend. Not because I really didn’t want to be with her, but because I just needed a minute to breathe. It was selfish and wrong, I will hate myself forever for not spending those moments engaged or by her side.

What makes things even worse lately is a few things.

My brain also won’t stop replaying every little thing she said to me over the last few months which currently leaves me hearing things I didn’t hear before due to mental exhaustion.

Jacy was starving for my attention! Not the attention I was giving her, the kind of attention she desperately needed. Approval.

I should have thrown the chores to the side and laid next to her more watching movies.

I should have cuddled her more.

I should have spent more time listening and less time talking.

I should have told her I thought she was beautiful despite what GvHD had done to her body. She hated the way she looked and I told her I loved her no matter what, and that I always would which was always followed with a kiss. What I should have said was I think you are beautiful, over and over again.

I should have never left her side even for a moment.

I miss her so badly and just the thought of her sweet face makes me cry. I can’t sleep, not really a fan of eating anymore, I am down to one meal a day. Thankfully I am not drinking on a regular basis or alone. I tried but it just made things worse, so very worse.

I am angry at all of you.

I am sad and angry that we won’t celebrate our twentieth wedding anniversary. I had big plans for that one. Watching all of you happily celebrating your anniversaries and birthdays and love, it just makes me angry at God for taking my best friend away. It’s not your fault, but it stings and I don’t understand why the people I love keep dying.

If one more person tells me to find the positives I swear to Christ I am going to punch someone! There are no positives! I cannot for the life of me understand why? Why are there so many pieces of shit walking this earth and the one human being who showed me how to believe in love, humanity, and selflessness is taken from this world in such a horrific way! I watched her die!!! I can never erase that image from my fucking head!

Jacy would always tell me she knew, she always knew that she was supposed to be with me. That god had guided her way and always been the strength in her life!

So was she sent here to rescue me? Was she my own personal angel and now the time has come for her to go home and if so, how could God leave her to suffer so much before she went? I just don’t understand that either. She was in so much pain, every single day, she lost her sight, couldn’t breathe, had to live with broken ribs that wouldn’t heal, always felt like someone was squeezing her chest, retained water like a camel, lost all bladder control and couldn’t walk to the front door without a full blown panic attack!!! This poised, loving, caring, mother of four, church going, humanitarian and god loving human being was left with no dignity at the end!

Then I think it was all the medications that killed her! I mean it’s what I do for a living and yet we blindly follow the doctor’s orders! Most of her medications caused many of the problems she was suffering from under the guise of providing relief!

Or maybe I am just looking for blame because I am mad, because I will never press her cheek against mine again, feel her whisper in my ear, hear I love you. You know that really hurts.

Oh and she won’t be there for Parker and Jessica’s graduation, all the kids marriages and forth coming grandchildren! She won’t be there for mother’s day, no longer around for everyone’s birthdays all the things she enjoyed about life.

Don’t even get me started on Christmas!

Yeah I am a ball of fun!

What do I do? How do I go forward? Each day is getting harder, not easier! I stare at her pictures and want them to talk to me so badly!!! About anything!! Hell I’d even like to hear about the last episode she watched in regards to the Real Asshole Housewives of any fucking stupid city!!

But the pictures don’t talk, they just remind me of a time that was and will never be again. They hurt my heart, they make me wish I had one more day to say I love you, one more day to apologize for any day I was short with her or not on my game, one more day to hear her tell Cody to have a good day on the way out the door or have her tell me Jake called her and it made her day! One more day to hear all the dirty little gossip she learned from Jessica after an hour long bed and dumb television session between the two of them. One more day to laugh as her Parker watch a movie together and they both make silly comments to each other in regards to the flick they would be watching! One more day to hear about how the dogs all piled on top of her, scaring her but at the same time relishing in their doggie love. One more day to hear about how when she was stronger she was taking me to England to show me all the cool things she loved about that country. One more day to hear the story about how she became a firefighter, which of course led to us meeting and how she counted those blessing each and every day.

But of course I know if I had one more day that would lead to me wanting just one more day.

I see her walking out of Stanford triumphantly after 8 months. Crying tears of joy because she felt like she had a chance to live again.

I see lots of things, I am reliving lots of things, I am dying inside over lots of fucking things over and over and OVER AGAIN!

I really am having trouble envisioning a world without my wife in it. It just doesn’t seem fair or right, or both. Not completely for me either, but for all of you, and to the world. She had such big dreams that would have benefitted so many. I would have been so proud to help her see her dreams come to fruition while continuing on as the Montessori kids used to call me; Mr. Jacy.

And thus none of this will happen and here I am on a capsized boat named life. I have no life vest and I am drowning, slowly.

Drowning in a sea of tears..

I know you can’t say it back. But I love you Jacy..

Can we talk? Please???

theycallmebetty12 Comments

I wrote this piece on August 4, 2018. I could not bring myself to post it back then. But as I sit here struggling with so much guilt and pain over my wife passing away this last week on October 20. I think it speaks volumes to my mental status over these last few months. I also think that if you are reading this, struggling with how you feel you may or may not be handling adversity in your life. You will see that its ok, the pain is real, the rambling mind is real, and you need to understand you are not alone. I may feel alone right now, but know I am surrounded by love. You are too. Just reach out and ask for help. Please….

Can we talk for a minute? Please?

Don’t worry, this isn’t going to be one of those talks where it ends something like; it’s not you, it’s me.

Because trust me, it’s all me.

But we need to talk none the less.

You see I am having some problems with our relationship. I recognize that I haven’t been forth coming or honest about my feelings lately. That keeping things really close to the vest as it were has been my modus operandi. It has been tough for the both of us I know as I am constantly peppered with questions when seen out and about. But the thing is, I am not doing it on purpose. I am cowering in silence.

Things are rapidly changing in my life and as much as I live to talk with you through this medium it hasn’t been a priority out of fear. Couple that with a request to stop writing about a certain main subject (my wife), exhaustion on my part and a feeling of continual inadequacy in all aspects of my life and well you can see how the information clam has sealed tight.

I hope you can forgive me, but I’m having other issues as well. My brain cannot get past the continued bad luck that keeps raining upon me and my family. It never seems to end! I swear some days I am afraid to go outside, open the mail or even take a phone call out of shear panic to what’s waiting on the other end of the line. Everyday life is scaring the hell out me, I never know what rock is waiting to fall on my head, what vice is waiting to squeeze the last ounce of compassion and care from my heart, what nerve will finally be worn raw!

I lay in bed at night thinking about you and how bad I need to talk to you but when the time comes I just cannot bring myself to open the laptop and stroke a few keys! I know if I do, maybe something I say or am going through may help you, may give you strength or tell you it’s ok! As in for example; hey, see that guy has the same problem, life isn’t so hard and isolated after all!  But for some reason I just can’t do it! I have even gone as far as staring at the screen while trying to find the right words, but only my anger at this life comes through in ugly, disturbing tones. Things written that do not show a strong man able to conquer all but a weak tired man ready to climb into a cave, never to be seen from again, and then of course I end up deleting anything I have written.

My anger is off the charts! I find more days than not I am ready to blow! Some days I pray for someone to look at me the wrong way so I can finally lose my shit! Let out all this pent up aggression, depression and frustration. But thankfully it is never to be.

I will never understand how I won this lottery of spousal death twice? The first time around was relatively speaking quick, from diagnosis to passing was just under a month. I thought that was bad, I thought what the hell, how can this be? I thought life is so fucked up when it’s taken away so quickly and harshly! But what’s happening this time is 10 times worse! We have had hope, then sadness, then hope again, then more sadness then miracle hope as in a Bone Marrow Transplant and then more sadness and then a little hope and finally being told; this is as good as it’s going to get. Maybe she will pass within a year, maybe a little more, maybe a little less.

Even with all that, nothing compares to watching what all these medications in combination with GvHD are doing to the love of my life! Watching her deteriorate to the point where some days her brain is spot on and others she is almost a dementia patient. What the fuck!!! I get so freaking mad when I see her struggling and I know it comes across wrong or feels like I am taking it out on her and the kids but god damn it I am pissed!

Are you still with me? It might get a little dicey from here on out.

What fucking God would do this to a person? What God would take away a mother and wife twice from a man? What God would sit back and watch all this happen while I am supposed stand under this cloud of despair and think there is a supposed purpose to all this? Are you fucking kidding me!!

My kids hate everything! The older ones are running away, the younger ones are trapped here but for the most part staying either in their rooms or hiding behind a video game screen.

Every day is the same as we try our best to all take care of mom, while terrified to leave the house as she cannot see and struggles due to breathing issues to get from one room to the other at times! She puts on a super brave face for everyone out of fear that she is letting someone down. But in reality she is in more full body pain than any of you could ever imagine! Her ribs are broken (yea that’s right broken) from coughing all the time, her feet and legs swell up as she can no longer adequately move fluids throughout her body as I said before she is blind and don’t let her bump anything as even a pencil size eraser bump will turn into a dinner plate size bruise and sometimes those bumps will break the skin which leaves blood everywhere!! So tell me, please, what God would do that to a person??

I hate being at work, and I hate being at home! I want our life back! I want her life back! Hell I would trade places with her in a minute. But we all know how stupid that sounds because it is an impossibility!

I wake up each morning worried something is going to happen to me! Seriously, what if something happens to me? Tell me I am wrong at how scary that sounds! You can be honest, I won’t hold it against you! But think about it. You wake up every day and you are it! The sole provider, the sole parent, the sole caregiver (that she trusts) at home, and you feel as though you cannot take any more, but for some reason it just keeps fucking coming!!!!!!!!!! Just because she is sick and dying doesn’t mean the bills stop, or the debt goes away, it doesn’t mean the kids can just automatically accept that dad is now the end all be all for parenting, it doesn’t mean the ranch will just run itself! No it’s all on me! Fucking Me!!!

You know what is even funnier? Come on, guess what’s even funnier???

Through all this, I am supposed care about your emergency when I show up in my fire engine!!! Don’t get me wrong, I do, I still give it 100% when we pull in front of your house, but please forgive me if I am not as excited about your papercut, vomit, alcohol laced sickness or cancer that you thought you had but really didn’t because you were misdiagnosed during a DMV physical by a third party doctor who swore you had a pacemaker which you had no idea you needed due to a history of diabetes that runs through your entire family but missed your third cousin Billy.

Yeah……

Still here?

Sorry I know this was supposed to be a talk between you and I and it has instead turned more into a rant. I never meant to bring you any worry or discomfort, I hope you can forgive me. I am just tired, really, really tired of it all.

Deep inside, I am struggling hard. I wake up every morning and stare at her to see if she is still breathing. Somedays I am lucky and she is up, fumbling around in the kitchen making coffee, other days she looks dead to the world and I freak a little. Every day is spent in the house trying to keep up. I no longer know which way to turn.

I feel as though there is nothing positive going on in my/our lives. I have a career that has been placed on hold for 5 years now and I feel it slipping away. The horses and the ranch are barley getting by and I have other people riding our horses as I cannot even throw a leg over one. I am struggling to find joy in the little moments with our kids as those moments are few and far between plus when the times are good there is always a backhanded slap from something that goes wrong when we get home. I feel myself aging at a rapid rate and I fear death may find me soon too and that scares me the most. Eventually losing their mom then losing me not to long after. The thought of my kids having no one when this bell is finally rung is petrifying.

I have always tried to make light, be funny, show anyone that will listen that no matter what, you can get through anything. And now I feel like a hypocrite. For I have nothing positive to say, no words of wisdom, no stellar advice.

All I hear in my head is the sounds of sadness and quote from long ago.

People die every day, what are you going to do about it?

Answer: Nothing.

Thanks for taking the time to listen.

 

 

 

8 Heads in a duffle bag..

theycallmebetty3 Comments

Although my fingers have been fairly quiet as of late my brain has not. There is this strange struggle that goes on inside my head on a daily basis. It is as though two entities are fighting for the right to think and during that struggle neither seem to be able to act accordingly.

For the most part I have spent this entire process of dealing with the arduous task of caring for a Leukemia survivor, GvHD patient with positivity and faith. Struggling with the highs and lows, while finding strength and solace in my abilities as a caregiver with an upbeat attitude has helped immensely. Jacy and I have been so blessed to meet many of the people we have spoken with through the long reaching tentacles of the internet. Knowing that simply by sharing the human condition you have helped another is humbling to say the least.

But what do you do when you’ve reached what feels like the end?

Now I know deep inside, and I mean right now really deep inside, I fully understand it is not the end, that I not only want, but need to continue being open and honest. But I am struggling. Badly. It is why the argument inside my head continues on, it is why no matter how hard I try my fingers just can’t seem to find the keyboard, creating words that are meaningful to others while allowing me an avenue to vent, love and share with solicitude.

Constantly I stare into the screen and wonder what it is that is hindering my thought process, why do I feel as though I am constantly drowning and the only relief on the horizon is a shadowed man throwing paper life preservers?

To say it’s all too much that life is more than a person can handle has and always will be a cop out to me. I have been to other parts of the world, stepping from within the spoiled confines this country and my own personal bubble for which I reside affords us all. Witnessing true abuse of the human condition, desperate pleas from those who reside in squalor, with no more than two pennies a pair of shorts and no food to their name. Governed by those who care not about their people’s physical health and financial wealth but furthering personal gain. So I know, there is more inside me, more to give to my family, my community, my friends and my life. I know because I have seen true struggle and what I am facing inside is a mere droplet inside a rain storm.

Yet, struggling I am.

I used to go to work and hide my pain. It is a great place to hide ones inner demons as any day surrounded by good, like-minded people can bring about a recharge of the inner soul. One purpose, one goal, be there for the community and its citizens, save a life, save property from the destruction of fire, or help someone simply change their smoke detector batteries. The privilege of caring for one’s community on a daily basis is amazing. Spending 48 hours winding through the autonomous machine of daily chores while finding comfort in the twisted humor of your co-workers is electric! Starting a new guy down the right path while helping to refresh the volumes of knowledge 23 years has stored inside your head brings renewed life.

Instead as of late I’m feeling like a cornered parole, unable to do anything correctly while nervously twitching at the thought of going back inside. Working for a city (management) that no longer appreciates the enormous amount of effort we place with so very little in return. Refusing to acknowledge our continued attempts to assist not only them but the public to the best of our abilities while suppressing our very innate need to always help. It is demoralizing to say the least when you feel a department many have worked so hard to bring to the forefront is slowly slipping backwards and there is nothing you can do but shake your head and watch.

Coming home has always been the respite from the atrocities seen at work. A safe haven if you will where one can leave their heavy gruesome baggage at the door. But it seems I can no longer walk up, drop the bag and not worry about it for a few days.

It’s like 8 heads in a duffle bag (movie reference), you know at one point you held the bag but now it’s gone missing and no one needs to see what’s inside. So what do you do?

You panic.

Therefor in a constant state of panic I am! Oh I may look cool on the outside (or really angry and moody as has been brought to my attention) but inside a constant state of disarray exists! No longer am I able to complete a single task as my life spins out of control. Raising these kids mostly on my own, caring for my wife using the same skills acquired over many years at work, the line begins to blur between work and home. With that blur the demon heads are no longer at rest inside that bag on the porch. They come out at all times of the day or night. Some days they bark at my inner walls, clawing and screaming so loud I cannot turn them away and so, I bark back. For those who know me, who know me well, when I turn on something I do it in grand style. It is never pretty, it is mean spirited and hurtful. It is shameful to say the least. Then the bag disappears and more panic sets in as I must find it and keep it from anyone else. It can never be seen! EVER!

So here I am, still left wondering.

What is in store for our family? What is in store for their lives? How am I supposed to protect them from the boogeyman, that hidden danger or beast waiting just outside the door? What lays ahead for my life and how am I ever supposed to keep moving forward? I mean, I am moving forward aren’t I? I wake up every day and put my feet on the floor, pull up my big boy pants and move through the day just like everyone else. But where is the break? Where is the respite we have been told is coming? When does my wife get a break from her constant inner struggles which are also mine? When does she no longer feel pain? When does her body become strong again and she no longer needs to live on a regiment of medications that leave her weak and sick? When do we see the pot at the end of the rainbow? Hell I would even be happy to just see the fucking rainbow!! Why has my life been hit so hard, and why does it continue to get hit time and again? What the fuck did I do to deserve this and if it’s a Karma thing and it’s me, why is my family paying the price, over and over and fucking over again!! Can we please get a break? Can we please just have our lives back????

I am angry, angry as hell and I feel as though I can no longer hide it! People tell me I need to take time for me, hell I tell others to never lose who they are and work hard at taking time for themselves to keep that spirit alive! But lately taking time for me feels like being trapped in a buildings revolving door and I can’t get out! Spinning so fast I can only feel a moment of either freedom or pain, never able to fully step from within the confines of the door to one side or the other.

I worry so much about my children and all they have been through, I am in constant worry for my family and all they feel as we still make our way slowly down this forsaken path of a leukemia nightmare. I worry for our ranch and this life we built as I find struggles in maintaining its future for our family. I worry for my job as my passion has waned through this continued personal battle. I worry for myself as I push it all down deeper inside.

Please don’t tell me God doesn’t give me anything I cannot handle. That is a twisting of the actual verse Corinthians 10:13 referencing sin, and sinful choices. That although sin is irresistible, the lord will always give us an escape from such temptation.

So what is the end game? There has to be an end game right?

Is the end game hidden within 2 Corinthians 5:10

For we must all appear before the judgement seat of Christ, so that each of us may receive what is due us for the things done while in the body, whether good or bad.

If that’s the case then my wife is saint!!

But the question remains, why must our family continue to struggle? Haven’t we all had enough?

Why do I lay my head down at night and have mild panic attacks because my insides feel tormented. My mind never shuts down and I feel as though the other shoe has yet to fall. Why must I live in this constant fear? I don’t want the other shoe to fall, it cannot fall!

“Deep breath”

Thanks for taking a moment to read this and witness me losing my mind.

I have stored that up for a long time now. I just needed to get it all out. I know the answers will come when they come and there is nothing I can do about it. I know there are others who feel the very same way I do, and I hope if you are reading this you know its ok.

It’s ok to ask why, its ok to feel inadequate, its ok to feel as though you may be failing, It’s ok to struggle and its even ok to carry the extra load.

You know what’s not ok?

Keeping 8 heads in a duffle bag on your porch.

Yeah that’s never ok…..

2017 a story not yet written.

theycallmebetty12 Comments

The easy way out is to sit and complain, feel sorry for yourself or constantly wonder why? I have never liked the phrase “It is what it is” and yet for some strange reason it seems to be flowing from my mouth more than ever lately. As though my repertoire of emotion driven responses has taken a thoughtless vacation. In reality I have allowed myself to quit, therefore to find conversation worth having has lost its drive, its zest, leaving no creative or emotional yield.

Our family has started the year out with continuing troubles. It is beginning to feel as though each year meets us with a newer version of this show we call our life. A downcast tragedy written and directed by who?

Our lives are a journey, we are never guaranteed safe passage through it all and though it would be easy to complain or blame God (trust me I have done my fair share of why me? And what the fuck!!) In the end it is up to me not God to make a difference. To cry towards the sky with a shaken fist screaming at a creator or heavenly being leaves only the foolish exhausted and hoarse. God (depending on what you believe) may have created you, but you and you alone need to be able to hear the voice when it calls to you. To open your eyes and your heart, to remove the blinders and stigmas that come with the drudgery of day to day living before you can make an appropriate decision or change with your life.

The reality of it all is we (my family) are nothing special in the grand scheme of things. We (my family) and our troubles are but a spec amongst the hundreds of thousands living with troubles/struggles of their own. What makes our struggles any different from those struggling around us? What I do believe is how we handle our situation in particular may lead to another feeling hope while they wallow in the despair of their own personal pool of troubles. Sharing, compassion, and the ability to constantly learn, change and grow is what makes us unique as human beings.

I often find myself thankful for the social media platforms we all enjoy. I believe it helps us all to find, create, share and understand much more than we ever could prior to living within our own social boxes or narrow geographical boundaries.

On one hand I believe much of our perceived troubles come from looking at others who consistently post online what appears to be a perfect life. If we don’t feel our lives are up to snuff we tend to live through others and that can lead to feelings of resentment or envy that we may not have the ability to recognize. And yet we also see others who are struggling with every aspect of life so we tend to either selfishly feel a little better about ourselves, or we become distraught with those troubles igniting our inner compassionate drive thus feeling an overwhelming need to help. Another amazing human trait that could easily be lost within the alternate reality world surrounding us. Although social media often times comes across to me as the biggest reality show on the planet (and I hate reality shows for there is nothing “real” about them) it is a mind boggling creation to say the least.

Where Social media becomes a place of hope from the heavens is during days like today. One blurb, a sentence or quip and Social media becomes what it was initially intended, a place of connection for everyone you care about to come together. Words of encouragement flow like rivers to the sea. When someone is in trouble, within seconds there is another there to help. When a message needs to be heard by the masses this electronic medium becomes the town crier! It has become a community without terra firma.

 

So thanks to this wonderful world of connectivity, 2017 has not started out as bad as one would think. We are here, we are all alive! Encouragement and love flow freely through texts, blurbs, snaps, postings, phone calls and the shared written word. I say take whatever life has thrown at you and find a way! There is always a way. No person should ever feel the world or deck is stacked against them solely. It is your life, you and you alone make the decisions on how you are going to handle the curveballs life can and will throw your way. I may not like what is happening right now, I may feel frustration over how our life is going and what is happening within the confines of my little niche in the world, it may pain me to see the woman I love and our children suffering through what is essentially a not fair situation. But there is always something to be learned, a message to be shared, a heart to be touched, a moment of never ending love to be cast upon those involved.

We will get through it all, journey be damned.

Jacy is still at Stanford and will be there for an as yet undetermined period of time. She has a pretty bad case of pneumonia along with Rhinovirus (a cold). Now a cold is not so bad except Jacy has an extremely compromised immune system which can lead to very serious complications if she becomes infected.

For a few months now, Jacy’s heartrate and ability to breathe have become a huge concern for us. She can’t make it from the bed to the bathroom without a heart rate of 160, and her oxygen saturation levels dropping into the high 70’s, low 80’s even with oxygen on at 4 liters per minute. She ends up winded and exhausted by simply moving 20 feet. It has left her demoralized and feeling defeated.

The other morning as Jacy was having trouble controlling her heartrate and breathing, and the world became rapidly smaller she felt as though she was going to die. It was painful and it was scary. There was no feeling of bliss or relaxation coming over her and in that moment as the lights were growing dim she realized this was not the way she wanted to go. She was choosing for herself, fighting for her right to pick where and when!

Yesterday in the hospital still sad that she missed out on Parkers birthday she vowed to fight even harder. This thing, this GvHD will not win! There is way too much at stake and no one is going to tell her how it is going to be!

So today she sleeps, today I quit whining about how tired I feel, today we relish in the endless love shown us by friends and family through phone calls, texts and the almighty social media! Today we look forward to what tomorrow has to bring.

Tomorrow isn’t written yet and what we do with it determines how this story goes….

 

 

 

 

Jacy Update; One year later.

theycallmebetty8 Comments

She walked down the hallway to a thunderous applause. Smiles, cheers, and hugs were the benchmark set for the morning. As always she made it (strolling down the hallway) look effortless and few would know she was doing her very best to simply stay upright. She had made it, she had survived when many felt she wouldn’t. She outwitted, outlasted and outplayed what was initially supposed to be at the very most a 4 month stay. It was almost 8 months instead. She had become a survivor.

That lone walk one year ago down a Stanford hallway, headed towards an exit was five minutes of pure bliss.

Fast forward one year.

Today marks the one year anniversary of my wife walking unassisted through the hallways of Stanford Medical Center to an awaiting car. She came home on that day and sobbed uncontrollably upon crossing through our gate onto the ranch. Her eyes cast upon land she felt she would never see again. It was a miracle and my faith had grown stronger.

Over the last year;

We have been to the Emergency room more times than I can count and it hasn’t gotten any easier. Even though no matter what hospital or emergency room someone remembers Jacy and we are always treated like family. But each time her body dictates we head that direction it feels like a giant step backwards and of course the inevitable panic attack associated with walking through those doors ensues! Fear solidly grips her mind as the thought of never coming back out is always present.

She goes to Stanford every two weeks for three to four days of treatment for her GvHD. It is a struggle, it rips at the fabric that is our family and we are very blessed to have continued help through immediate family and friends. We knew this wasn’t going to be an easy journey but wow, what a journey it has become!

I have become well versed on all medications associated with GvHD (Graft versus Host Disease) their indications and contraindications and with this knowledge my professional skills have been sharpened; specifically in the arena of assisting, acknowledging, and caring for any patient who has or has had Leukemia or cancer.

Our faith has been tested. We are constantly wondering what the bigger picture is here, what the “big” plan is supposed to hold and if we will ever receive a clue as to what is the answer. We wait patiently, trying our very best to understand, crying together, praying together, wondering about what the future holds-together. We feel robbed, she feels robbed of a life that once was so active and brisk. We both feel admiration and jealously as we watch other families, couples and dear friends moving on with their lives, posting pictures of holiday weekends, trips to Disneyland, camping and nighttime outings. It brings about feelings of remorse over time wasted, projects never tackled, feelings never shared, opportunities missed. All while a clock tic-tocs away in our heads.

It is a lot of weight to carry, not knowing if you are going to live or die. Knowing inside you can still feel the strong powerful woman you once were trying her best to roar like a lioness while recognizing those memories are waning, fading away, replaced by memories of milestones like the time you walked unassisted from your bed to the bathroom without collapsing or were able to get dressed with no oxygen on in just under 15 minutes. You are struggling to make the most of every day while only having enough energy to be cognoscente for 5 hours or less. Sleep is the only thing you know. You quit staring out the window because you can no longer have what’s outside. Fear gripping you constantly as anxiety rips through your soul. The only cure is more medication and a television filled with trash TV to keep your brain occupied 24/7. It becomes the new normal.

It is a lot of weight to carry not knowing if my wife is going to live or die. I have worked hard at caring for her over this last year. I have always thought of myself as kind of a half ass husband, but I can say without a doubt, I have done my very best to care for this woman I love. Making sure she has what she needs when she needs it, being there to hold her when she cries, assist her when she walks, make sure her medications are on time and she has food to eat before she takes her pills. I have grown to let her do things even though I don’t think she is ready for it. It gives her drive and purpose and if she can’t complete whatever she is trying to do, I am right there, a step away to encourage her when it is all over. I miss date nights with her, laughing our asses off at a little hole in the wall we would frequent in Winters, drinking wine and beer. Her staring into my eyes our faces inches apart and that smile! Oh that lovely beautiful smile!

But what I have instead is a better understanding of what marriage truly is. We all say the words; in sickness and in health, till death do us part. But how many truly understand the meaning? Marriage is a journey. And much like any journey it begins in the comfort of a room, with hopes, dreams and well intentioned plans. You both start out on the journey together, with fanfare, family and friends all wishing you well and it all seems smooth in the beginning; but when the journey strays off course, life becomes hard, bitter, with at times both of you not following the same plan you begin to define your relationship, and as storms come and go you rebuild, alter course and travel onward. A solid bond between two people and a solid relationship will flourish and grow with continued love and understanding thereby creating a foundation of stone.

I feel our relationship has done nothing but grow, leaving that foundation of stone for our children to stand upon and hopefully flourish. So although it has been a difficult year, good has come from this giant hill we are climbing together.

I haven’t been writing a lot about Jacy lately because we are living in our new normal. But as we move into the New Year approximately two hours from now I thought we would start the year off with an update.

Jacy has been feeling very sick, she is exhausted all the time, and can barely get out of bed. She has oxygen on 24/7 as without it her saturations levels fall dangerously low. Our family just returned from three days at the coast with family. Jacy was able to get out one day for four hours. She sat on the beach and enjoyed the ocean air surrounded by her sisters. It was an amazing moment for her and our family! Once back at the house she slept (not by choice) pretty much the rest of the time.

We are waiting to hear from her doctors as to what our next step should be.

She is scared as she doesn’t feel right, which of course is a different “right” from whatever “right” really has become for someone as sick as she is on a daily basis. She just seems to stay weak instead of getting stronger and that isn’t good. She has asked that as we head into the New Year, if people could please take a moment and send some prayers her way she would appreciate it. As we have seen over this three year journey a little prayer power goes a long way.

As the year comes to a close, I want to personally say Thank You to each and every one of you who have assisted my family in any way. Without the love and support we have received this journey would have been unimaginable.

Thank you all, Happy New Year and may all of you be blessed with an outstanding 2017!