Day 11. I’m so sorry you had to go…

Eleven days

It’s been eleven days since we said goodbye. It wasn’t pretty, no longing stares or pointless conversation. Goodbyes are always hard, I am glad we didn’t do the whole; it’s not you, it’s me thing. That would have been pretty pointless.

The thing is, I have never been away from you this long. I have never gone a day without hearing your voice, laughing at something dumb or had you to bounce ideas off. I understand that seasons change, lives change, feelings change and with it we should learn to accept that change, embrace that change and learn to grow from its opportunity. Yet I am so confused.

I feel as though I tried really hard to be everything you needed me to be in the hope we would grow old together, raise grand kids together, and be there for each other. Best friends until the end! It was the plan right? I mean you said it was, you said you would always be there for me to dote over, to help pick me up when I was down, carry some of my load as I to carry yours, meet me in the middle of the toughest situations and walk hand in hand through this messy thing called life! You promised me that I could go first! I know it’s selfish, but after everything that has happened in my life, I just didn’t think I could bear to live through another emotional loss of such magnitude!

And yet here we are. You have left and I am alone.

I cannot get past it, I know, I know, it shouldn’t have been a shock, things hadn’t been working out for a while. But it was a shock, of the greatest magnitude!! When I think of the moment your left and trust me it occupies my every thought, I can’t catch my breath! I cannot think straight, to see you leave that way wasn’t easy by any means!!! I have never seen that look on your face! Your bright, sunny, amazing smile encompassing your olive complexion and radiant eyes has never, and mean ever looked that way before!!! It, well, it was horrific!!

Days later and all I can think of is who am I? Missing your voice, your advice, your goofy demeanor is bad enough, but let’s cut to the chase! Who the fuck am I? I have been 50% Jacy for 17 years and I really liked that, a lot! WHO THE GOD DAMN FUCK AM I? WHO AM I SUPPOSED TO BECOME? WHO AM I SUPPOSED TO TALK TO AS I FIGURE THESE THINGS OUT? YOU AREN’T FUCKING HERE SO WHAT THE BLOODY HELL??!!!

Ok I am sorry. I am really angry! So fucking angry!! I am angry at God, I am angry at Haiti, I am angry at Leukemia, Chemotherapy, experimental drugs, promises, Stanford, Kaiser, fuck I am even angry at myself buying into all this bullshit the same way you did! The only difference is you never wavered, you always felt you were going to beat this fucking thing!! I spent so many nights not sleeping, worrying for you, for your safety, for your mental well-being. I dove into the process and everything and I mean everything pointed to dark, black places that no one should go! But you, you always shone brightly, always with a kind word or positive thought. It is one of a million reasons I fell in love with you. You always knew I was a realist, a black and white kind of guy and although it bothered your unicorn and rainbows outlook at times you could always trust me for the straight answer. And I never disappointed.

I hate that I know the things I know, I hate that my profession has given me insights I never should have had, I hate that on the morning you left I knew that was the day you were leaving.

On the flip side, I am also thankful for the knowledge I have, it allowed me to care for you in ways others could not. It kept you safe and warm and nothing, I mean nothing kept me feeling closer to you than when you would tell me I was the only one you trusted with every single aspect of this shit sandwich we were handed. I was always prideful of our marriage.

I guess none of it matters now though does it? You are gone and here I sit.

Jacy, please know, that I understand completely why you had to leave. The hardest thing I’ve ever had to do in my life was lean down on that Saturday morning, kiss your cheek and whisper in your ear that we would be ok, the kids would be ok, I would make sure all of your dreams for them would come true and it was ok for you  to go. It killed me to say it, but it was the right thing to do. All I could think of after was that bullshit saying; if you love something set it free, if it comes back it is yours, if not it wasn’t meant to be. I don’t know why I thought that, because we were meant to be.

You were in enormous pain, you have been for some time. You have been struggling just to make one more day time and again. I no longer wanted you fighting for me and I know you Jacy Mirelle! That is exactly what you were doing. My heart is so torn, it aches beyond any pain I have ever felt, but saying goodbye was the right thing to do even though I know you loved me and you were never coming back. I’m trying to let the reality of it all ease things for me. I mean I know you are no longer in pain, you are in perfect form free from this world earthly struggle. But I guess I am just a selfish man who knows he had something special. You taught me about love, true love, how to love and be loved in return. How does one go forward when that much love has vanished? I am surrounded by so much love and support, yet I am achingly alone. I am trying really hard baby, I really am, but it’s just not ok that you left. I am not mad at you, I could never be, I just miss you.

I’m scared and I need a cheek snuggle really badly.

I’m really sorry you had to go, I love, love, love you..

 

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Can we talk? Please???

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.

 

 

 

The Face of Leukemia belongs to another………

Oh god! It’s happening right now!!! It’s happening right now! Oh my god, oh my god, holy shit, I’m not ready, or lord I’m not ready!!! Please don’t go, PLEASE DON’T FUCKING GO, YOU CANT LEAVE ME, YOU CANT LEAVE, PLEASE BABY PLEASE D O N ’T  G O…………..

I… love … you….

Time of Death (TOD) 12:10

Date: 10/20/2018

No it’s not a reality show, or some made up Holly wood bullshit and I am not writing a paragraph for some future best seller!

It’s the playlist running through my head every day since my wife succumbed to GvHD or Graft vs Host Disease one week ago. GvHD, a nasty derivative of a Bone Marrow Transplant post Leukemia diagnosis.

I have been a firefighter for 23 years. Nothing, and mean NOTHING prepared me for those 30 seconds as I watched the woman I loved, cared for through sickness and health, good times or bad, take her final, gasping, breath at 12:10 on a bed she made me swear she would never be in (hospice provided hospital bed) in the transformed living room of the place she loved more than anything-her home.

I cannot even begin to tell you the number of people I have personally witnessed perish. I cannot tell you the number of people I have personally watched suffer in agony as the one they loved slipped away. I cannot tell you the number of times I drove back to the station after an incident, filled with sadness for those people and sluffed it away with humor or companionship from my fellow co-workers.

I cannot tell you how badly all of it hurt and came to a head at 12:10 on Saturday the 20th 2018.

The storyline if there was one should read: quietly I wept by her side knowing she was in a better place, free from pain, one with God. I took comfort in knowing these things and because of this knowledge was able to open up and allow others to grieve by her side.

But this isn’t a storyline! This is my life..

If I hadn’t been in a chair, I would have fallen to the floor, If my sons hadn’t been by my side I would have crawled under the bed, but make no mistake, I wailed, I sobbed, I kissed her face, over and over, and over again, just praying for one last look, one last mumble, one last anything.

There was nothing. She was gone, I was crushed, my heart is consumed with pain, I feel immeasurable guilt for the multiple hours she spent alone, trapped in this house as I ran from one place to another, and the thought of living life without my center, my navigational north by my side is unbearable.

Today is the one week anniversary of her death.

I have made it a week. The house is empty, oh so empty. I still am not used to the silence associated with no medical equipment running, no sounds of her coughing or calling my name for assistance. I need more than anything to hear her making dumb jokes, asking if I think GvHD has made her sexy or wanting nothing more than a cheek snuggle. I pace around in the morning early, trying my best to fight the urge to go downstairs and check on that fucking empty room.

This is NOT how she would have wanted me to be. I sit in her room and tell her I am sorry, I tell her I promise as time goes on I will get stronger, but right now I am mourning. I have come to realize I am not mourning just the loss of my wife, my best friend, a person who gave so much of herself to those around her which in turn made me a better man. I am mourning the past, the five years lost, filled with sickness, Stanford, Kaiser and such. Date nights, alone time, reconnection, weekends, and walks around the property, loading up and taking horses anywhere or nowhere at all. I am mourning what we didn’t have for 4 of those five years. I am mourning what we will never have again. I am mourning for my children, for my grandchildren and that is what hurts the most. That woman lived for babies, for being a presence in their lives and the thought of my grandchildren never meeting their goofy, fun loving grandmother. The thought makes me sad, so sad, as if I am drowning in a perpetual sea of sadness.

I am sad my son’s wives will never know the true unfiltered love of a mother in law with no agenda. I am sad my daughter won’t have her mother at her side on her wedding day.

And I am angry.

The hardest part for me is why? I am not supposed to know the answer, I am supposed to believe and follow faithfully. My faith has always been strong. How many times must a man suffer? How many times must a family suffer? What is it I am supposed to learn from all of this?

My whole life I have wanted nothing more than a family, to marry, grow, and together step through the seasons of life. To celebrate 50 years of marriage, to celebrate weddings, anniversaries, births and birthdays. To have a ranch where they all come together with their children built upon the seeds their mother and I threw into the mix. To die an old couple knowing we did our best, grew our crop and watched it flourish to harvest together.

To pass on our love, compassion and set an example for our future Franceschi generations.

I have been robbed, she has been robbed, and our children have been robbed. For that I am angry.

She would tell me to knock it off! To not be angry, we all knew this was a possibility, that she did this for no other reason than to be by her children for one more day, to hear their voices and feel their presence for one more day. She would tell me she succeeded and that it quite simply was time to go. She had a funny way of always knowing. She just had a way. I loved her for it.

Right now, I wish she was here, for 7 days later, I really need her to help show me the way…

The Face of Leukemia now belongs to another.

Picture taken at 11:30 am. 40 minutes before she slipped away.

I am not fine…

I am not fine.

There it is, I said it. It has taken me a long time to come to this conclusion. But, I have acknowledged it, pulled it out from under the emotional rock it was hiding and verbally stated its presence.

I am not fine.

There are many reasons I am not fine, and it’s not a simple answer to the question of why? But it is a truth, a truth I have been hiding for quite some time now.

I spent this week in San Diego as a participant in a Health and Wellness for public servants seminar. The first day started with an amazing opening speaker who really inspired and justified my resilience in accepting this time away from Jacy. After that it was a lot of the same old build up, and for us fire guys a reiteration that ICS should always be used while managing any type of incident. Including a mental health crisis. After 8 hours of what was new and interesting information for most and a segment of boring refresher for us fire people. I prayed the class would only get better. It did not disappoint.

Day two found us thrown into the emotional arms of a speaker covering the essentials of support, where that support comes from and what it looks like when built properly. He carefully broke down through his own experiences where we go wrong as public service personnel when it comes to identifying the who, what where and why of our foundations for strength while working these spiritually, emotionally and mentally taxing professions.

As he stood there expounding on his failures, the recognition of a skewed priority system, the ability to deny professional help after a triggered emotional event and the wall he built around him by simply stating he was fine when asked. It hit me, hard, like a ton of bricks that everything he was saying fit me to a tee. That I to have been pronouncing my resilience nonstop and answering every question in regards to how I was doing with the five year demise of my wife as I was “fine”.

But I wasn’t fine. In fact I had been living this lie for so long I actually began to believe my own bullshit.

You see in those few moments as I wandered in and out of his lecture, with every key point fitting me perfectly I knew it had gone on long enough. But where did all this come from? How did I get this way? Why have I been able to carry this load so well for so long and still be standing?

Day three gave me the answer.

During a transition in classes on day three, having freshly been removed from an hour long course on family crisis and the emotional well-being of children in regards to perceptions related to our jobs.

I received the phone call no one wants.

My wife, the love of my life, the strongest human being I know in this world was in demise. As many of you already know Jacy has been fighting a very long hard battle with GvHD post Leukemia transplant. The GvHD has won. We quietly placed her on long term hospice four weeks ago. Affording us instant access to RN’s who would come straight to the house when needed. Also giving me a strong base to stand on as I have been the head nurse to my wife for over a year.

 

 

 

The phone call went something like this: James, Hospice is taking Jacy off the Stanford medications, she can no longer swallow, or eat and really it’s about pain management now. She has but a few days.

Of course there is much more to it than that but this is neither the time nor place to run through her complete medical chart, emotional state or my irrational state of mind.

As of late I have been referring to myself as the air traffic controller of our family, that call was the equivalent of having a plane drop from my screen. Call sign, call sign, pandemonium and panic ensue.

Yet it was also in that moment, standing on a deck just outside the convention overlooking beautiful Mission Bay trying to keep it together as 600 hundred of my fellow public servants could see me from many vantage points I not only realized 100% I met every single criteria for a public servant-no a human being, father of four, dad, a fucking husband in distress and the honest recognition I needed help. Just like that, the clarity as to how I have been able to keep going for so long hit me like a brick.

My father.

My dad could drive me crazy! His self-righteous bullshit was always something I rebelled against! But since his passing here at the house almost three years ago I have come to realize that even though I fought against him so hard for so long there are traits he taught me that I carry proudly to this day.

Son; always put one foot in front of the other, life will knock you down but you need to keep going. What else are you going to do?

Of course in his later years he did nothing but sit on his butt and blame everyone and everything for his perceived failures in life instead of cherishing what was around him. This was also a bone of contention between us because I believed the latter and it made me mad he wouldn’t follow his own advice.

But here I was, overlooking the ocean, swelled up with a myriad of uncontrollable emotions. Not more than a few hours earlier I had been talking to one of my co-workers about how tired I was after five years and several Leukemia associated battles. Trips to Stanford, scares, triumphs, disappointment, doctors’ visits to Kaiser, Jacy crying in the elevator proclaiming she wasn’t ready to die, because she felt there was so much work left to do. It all has taken a tremendous toll on us all, of course no more than what it’s done to my wife.

The only life I have known for five years is that of a single parent (I fully admire all of you single parents) doing his best to get three of my four kids where they need to be when they need to be there, run our ranch, work my job as a firefighter, and care for my wife 24 hours a day many times with little sleep. I am blessed the most amazing support structure in Jacys family and with the assistance of our Gina I don’t know how I would ever have gotten it all done, but either way, yeah I was tired.

But what struck me, what really opened my eyes at that very moment was the realization through wonderful training that week, was that I hadn’t been placing one foot in front of the other for five years, no, no my friends. I have been doing it for 18 years.

 

 

 

I never dealt with or recovered fully from the loss of my first wife. I have been doing the emotional two step in one form or another for a very, very long time, affecting my personal relationships, my children’s ability to grow as human beings and my own self-care.

So yeah I am tired, I am so fucking tired.

But in that same instant, I’m not ready!

I am not ready for any of this, I have the skills to handle it, I have a complete support network in place to handle it, and I have the contacts to some of the best professionals in the business to handle it! All of that is something I didn’t have in 2001 when Kim died. I have been praying for peace for my wife, but her mind says she isn’t ready. I have been wanting to have a moment where I don’t need to worry about anyone or anything, but I am a man who cares deeply for his family, all of his family so that is not a viable wish. But I am not ready to say goodbye.

On the flight home I stared at the ceiling, I could hear my wife’s angelic voice in my head as I replayed moments from the past. It hurt because we haven’t had a conversation that was completely lucid in quite some time. I relived many of my favorite times with her and realized how much I will miss even the tough times. She is the only woman in my life who understood I never ever meant any harm when at times my mouth wrote checks I couldn’t cash. Which means she is also the only person who could ever call me on my shit without receiving the full verbal wrath of James Franceschi! Something I am always embarrassed by when it inadvertently happens.

I don’t do alone.

What am I going to do without her? Why is or did this happen? I have been so focused on keeping her alive that now as the time dwindles away I haven’t remotely considered how I am going to function without her, her strong willed personality, her gigantic kind, giving heart, her ability to coerce me into doing things or trying things I never, ever would have done or experienced completely against my will only to have me thank her for it afterwards. That larger than life smile, how will I go on without that larger than life smile in my life? How are my children going to function? Cody and Jake have been through this, they still have no idea what’s ahead, and they are quietly struggling as well but what do I say, what do I do? What is Jess going to do in a house filled with all boys, no mom to be there for prom, homecoming, graduation, and all the girly things that need to be addressed in the way only a mom, no, only my wife can do! What about Parker, why is this happening to Parker her only child? She fought so hard to bring him into this life and now she won’t be there for him either!! She is his everything!!!

Listen, I understand I am not the only person in the world this has or is happening too. But what the hell???? Why is this happening to me twice and how in the fuck do you justify taking away quite possibly the kindest most giving person I have ever known. Why not me? I have spent my life as an asshole, isn’t that the way it’s supposed to work???

 

 

 

Jacy Mirelle Glenn Franceschi answered a call 16 years ago. She fought hard against all odds to answer that call, fulfil that vision and she has without question made me the man I am today! Something I am so, so grateful for! She fought long and hard, working night and day to create the James Franceschi that sits here typing, wondering why? Is God saying her job is done and if so couldn’t he have found a different, less painful and disturbing way to tell her?

I love, love, love my wife. What am I going to do the first morning I get up and I don’t hear; Good morning my love as I grumble across the kitchen floor and make her coffee and breakfast? That first morning the kids don’t yell goodbye mom see you after school, hope you feel better today, while she does her best to respond with: have a great day! The first time her hospital bed isn’t there, the oxygen machine isn’t running, the doorbell isn’t ringing with medication deliveries and the house is cold and empty as if she never existed? The house she created, the home she filled with warmth and love, the ranch we tried to build together???

WHAT KIND OF FUCKED UP SHIT IS THAT??? MY BEST FRIEND IS DYING SLOWLY AND THERE IS NOTHING I CAN DO ABOUT IT!!!!

I’M NOT FINE, THERE IT IS, I’M NOT FUCKING FINE!!!

8 Heads in a duffle bag..

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…..

An Incredible Journey

I am on an incredible journey and I don’t know why.

Why was I chosen to walk this path filled with so many unexpected surprises? Why do I struggle with the same challenges day after day, feeling as if there is no reprieve? Why I am even allowed a new morning when others for who I look up to, revere or admire are facing their last days or have simply vanished, passing from their earthly constraints.

Every day I awaken, place my feet firmly upon the floor and stand up. I then make a conscious decision. Do I carry on, or give up? Do I meet the day’s challenges or pull the sheets over my head and cry foul? Do I continue to regress emotionally or do I say fuck this, square up my shoulders then throw a middle finger towards an overwhelming temptation to just quit?

Lately it has definitely been the latter. I’ve been putting on a good face while struggling to get out of bed then smiling the smile, telling the same old jokes, letting the actions or words of some bring me down and basically feeling as though I should be giving up. I am not happy, not happy in one little bit.

The darkness has crept in and I haven’t seen any light for quite some time. Between the duties of caregiver to my wife, caregiver to the public and struggling to remain a vigilant father while my children struggle with their own feelings for which they have no knowledge or control over in regards to our current situation. I have slowly faded away. Not all at once, but little bits at a time.

It feels like constant darkness in my head, every moment of every day and there has been nothing I can do about it.

So you begin to ask; if there is so much darkness why do you proclaim this an incredible journey?

Because like it or not, hate it or love it, detest its existence or clamor for more, it is an incredible journey!

As human beings it is our job to grow and share. It is not a right, you are not rightfully given another day on this earth. You have no right to prosperity and wealth, you have no right to a job, a house, a marriage, a life of any kind. You have to earn it!! Then grow and share through the process!

That’s right, I know this may come as a shocker to some, but your life is earned. What you have accomplished by the time your final day comes (and it comes for us all) is 100% purely up to you!

My grandmother came to me in a dream last night. (Don’t get all; holy shit he’s gone off the deep end) Although I know dreams are a conglomeration of memories, subconscious thoughts, neural transmissions and blah, blah, blah. It was exactly what I needed at just the right time.

My grandmother on my mother’s side was a very interesting woman. She graduated from Stanford during a time when women were considered less than men. She dated a few notable individuals of the time. She made her own way through life when in her forties her husband, my grandfather died of a heart attack. She had a very successful career in finance when women were considered nothing more than secretaries and used her skills to set an example. She traveled the world going where she wanted when she wanted with nothing holding her back!

As a child I vaguely remember her stories about life, travel and the many lessons she put before me. Whenever we visited she used buttons to teach us about money, plants in her greenhouse to teach us about life, books to teach us about literature and conversation to teach us about the human equation. I woke up this morning wishing I was 8 again so I could hug her and listen more intently.

She wrote a book about her life. I have it on a shelf. I have read twice and when I awoke this morning it dawned on me that I may need to read it again. I need that emotional connection, to relearn what it means to be me, throwing caution to the wind, standing up for and protecting my ethics, beliefs and way of life no matter what anyone else says because my life is mine. To help stay on track, for in my heart I still believe that we all learn from one another’s triumphs and mistakes. During this crazy time where our socializations seems to only focus on a small device that spews nothing more than negativity an hate tearing the very fabric of this country. Maybe one small voice, writing about his struggles in an obscure seldom read blog could remind us there is a positive, no matter the circumstances and that choice would mine to make. No one could take it away.

My current situation has a myriad of balls all up in the air, a juggler’s nightmare as gravity brings them towards me at a dizzying pace! It constantly comes up in conversation when people say; I don’t know how you do it, in regards to the struggle associated with raising four children, working as a firefighter while caring for my wife with stage four Graf vs Host disease. Watching as she withers away, gets strong then withers away again. Is frustrated with the fact she is going blind yet bravely and with great fortitude works her way through daily activities for which she refuses to give up on. She is strong, brave and amazing.

It (the how do you do it comment) is a simple enough statement, it is never meant with any disingenuous undertone, and my response is usually almost always; it is what it is. I say that as to not offend anyone or hurt their feelings. But my real thought is; how could I not! This is my life, my family, my wife, what the hell else am I supposed to do?

I realize we live in a decaying society where it is easier to point a finger, post it on Facebook, complain publicly, give up and run away than it is to stay behind and fight for the ones you love! Fight for the life and family you have created! To me that is a sad moniker of what our lives in this country have boiled down too. If the going gets tough-make a spectacle then QUIT!

There are those that wonder why I write so openly about my personal life and if it affects anyone close to me.

Yes it does affect those close to me, but I have always felt deep inside it was my obligation to share everything. Why? Because I have yet to see one writing that adequately covers or assists the multitude of struggles and emotions I am feeling. Everything ever written in regards to being the spouse of a Leukemia/Bone Marrow Transplant survivor is generic! Nothing even remotely touches the many facets of life this horrible disease along with recovery post-transplant throws in your face. It is all glossed over as to not scare you. Well guess fucking what? Life is a scary thing, now throw in all the new challenges associated with a wife whose body is trying to kill her and well you better sack up and learn from someone who has walked the path! Stay firmly away from those who wallow in a dream world where after treatment life just carries on as if nothing ever happened!!! Which is where I think I come in, for those who want the truth and seek it through my writings.

So then I wonder do people think my attitude comes naturally. My ability to cope? To understand and carry on?

Because it takes work, patience and the ability to listen, not pass judgement when you can and keep an open mind. It takes and incredible amount of faith and that faith is tested, over and over and over again! This journey I am on reinforces all those things on a daily basis!

So then my mind digs deeper into that simple question of “how do I do it” and I wonder some more. Do people believe that being a firefighter comes naturally? That we are all born with some obscure kryptonite type gene that predisposes us to the atrocities of the human condition? You see, firefighting, that is the easy part! It always has been and always will be. You still need to understand basic chemistry and have a few years’ experience using those skills to know exactly when and where placing the right amount of water at the right time will put out the fire while saving lives and property. This professions education is real, the long hours studying and keeping those skills are mind numbing. As a firefighter you need to become proficient at a little bit of everything. Building construction, demolition expert, code compliance, hazardous materials, chemist, investigator, auto mechanic, auto technician, computer genius, locksmith, heating and air technician, heavy equipment operator, financial advisor, ER doctor, supervisor, pastor, councilor and truck driver. If you added up the salaries of all those things each member would be worth over a million a year and we can go into the private section with our degrees and make three times what we struggle to earn in our jobs, but that’s not why we do it. It is an overwhelming need to help people. But as if that load of constant learning wasn’t enough, and as I said, fighting fires using all that education is in fact the easy part, you know what the real struggle is? The thing that keeps us up at night, the thing that not one mother fucker prepares you for that haunts your very soul when you lay your head down on that pillow?

It is the endless onslaught of death that we must deal with on a regular basis. Dancing in our heads like ghosts from Christmas past. Dealing with them any way we can, through counseling, good friends and time away from the big green fire engines. It is also coming back the station and reading in the local paper that our city council doesn’t support us in the least. Or we are attacked by the public because we go as an engine company to the store to purchase our supplies which we pay for from our own pockets or that our retirement is some magical golden egg that is draining the state’s coffers when we pay an ungodly amount of money per month out of our own pockets to fund it. Its understanding and coming to terms with the fact we are not funded in social security therefore we only receive from social security what we put in prior to joining the fire department. But hey none of that matters as we lay our heads down at night, trying to erase all those horrible images while also knowing we are unsupported you know why? Because most of us won’t live past 60! It is a statistical fact we will all contract some form of cancer from all the chemicals and carcinogens we have absorbed or inhaled throughout the years! But no worries we’ll just keep pushing it all down deep inside so it doesn’t show when we get home! That way our families and spouses won’t see or feel our pain, so they can have that great husband or father home for few days all happy and cheery like normal families!! Right? Right?

Why do we do it? Why do we keep coming back for more? Because we wish nothing more than to make that one save, that one moment in life where a positive impact on another human beings life has been made. So despite being treated like shit by our public officials, living with our deepest emotions, we can rest easy knowing another is alive, enjoying their family because of the sacrifices we willingly made. Fulfilling our own prophecy through hard work and dedication. Bringing life full circle.

This journey has allowed me to witness my wife fight for her life while I hold her hand, struggle as she struggles and rejoice as she rejoices. We don’t always agree on the topic of rejoicing but through this journey I have learned the importance of shutting my mouth while allowing my spouse to find the joy she needs over little accomplishments. I have learned to keep my mouth shut as she sheds tears, relinquishing my need to fix things. For there is nothing I can fix and only a shoulder to cry upon or an ear to yell into is needed at that moment in time. I have found understanding I never knew I had as unwarranted venom flows from her mouth one minute and angel’s wings sprout lifting her high over her pain another. I hug her when she needs to be hugged and leave her be when she wants nothing more than her headphones and a television show she has seen 100 times so she can listen to it as her eyes will no longer allow her to watch.

This journey has taken a toll on my life and although as of late I have been angry over its direction, angry at the life we now lead, angry at myself for being so very fucking angry inside!! ALL THE DAMN TIME!! It is still my journey, I am writing (quite literally) my own story. It is up to me how it ends.

At the end of the day, when my time has come, I want my children to look back and not remember the struggle. But remember their father handled it all, with strength, grace, positivity, faith and a plan. Ok let’s face it a few good old fashioned Irish/Italian hot headed fuck you fest temper tantrums as well. Then I want them to be able to go to a bookshelf, pull out a well written book, open the pages and read the story of my life, their lives, and the lives of those who loved them unconditionally. I want them to ride along in this journey page by page and remember the way I remember my grandmother.

Does labeling this shit storm we live in a fantastic journey mean I will become more positive? No, it means I know who I am and what I need to do.

Will my mood cease to be down and at times dark? No, I am human and with that naturally comes forms of negativity. It is life.

The blog has been dark as of late because I have been struggling with so many emotions tearing me up inside. I am sorry I haven’t been able to share for those who reach out to me on a regular basis. Time to light it up again, hit that keyboards and continue along with this fantastic journey.

God help me…

 

 

 

 

God, could I get a little help? Please……

I have a confession to make.

I think I am mourning the loss of my wife.

Over the last couple of weeks, the two of us have held some very emotional and poignant conversations in regards to her health, my mental health and our families future.

She is by far the strongest woman I know. Her courage and tenacity is second to none. This shit sandwich she’s been handed and forced to eat time and again would leave most average humans gagging while pleading for the feeding to stop. Yet she bites down, grits her teeth and trudges through every mouthful!

I try to remind myself that God will never give us anything we can’t handle.

The other day during a conversation with her doctor she told him she’d had enough! It was time to either get busy living or get busy dying!

Think about that statement! A mashing of words spoken with the seriousness of an appellate court judge! No bullshit, no grins or giggles, no carefully chosen not wanting to hurt anyone else’s feelings words! This is a line in the sand and no one had better fucking cross it! For the first time in a long time I didn’t laugh, find a joke or even smile a nervous smile. She was making a stand and if you truly know my wife then you know never to cross her when she makes a stand!

And I think once again: God will never give us anything we can’t handle.

The last couple of days have been harder then normal. My irregular heartbeat is back, (which always leaves me panicking) my stomach is on fire and the head is pounding pretty hard. These are all secondary reactions to an emotional outpouring trapped deep within this sack of skin. I don’t know how to adequately express what I’m feeling or even describe it’s magnitude which tears my innards apart! Three long years I have been holding it together! Three long years I worry about tommorow and what it may bring! Three long years have been the worst juggling act I could ever have performed, always feeling like I am one hand movement from dropping all the balls.

Three long years and I continue to think: God will not give us anything we cant handle.

In that time I have gained 25 pounds, developed sleep apnea which leaves my chest and head hurting every morning and I have cried more times than I care to remember! Seriously cried like a baby! I’ve cried in the truck, the barn, while working a horse, after waking up from a nightmare to find she isn’t there only to quickly realize she’s at her dads for treatment! I have cried while blogging, in my dorm at work, after a call with a cancer patient, while reading a book and even while taking a shower.

To be honest I cry at everything nowadays! Like some stupid, weak, lovelorn teenager!! Show me a stupid animal video! Hell here comes the waterworks! A love story movie. Tears! Wedding videos! You guessed it more water!! And you know what makes it even worse?

I am angry as hell, looking for someone to blame and yet I continually tell myself; God will not give us anything we cannot handle!

That anger leads me to yell at our kids way more than I should, I yell at drivers on the road and sometimes I daydream someone will cut me off so we can fight! Senselessly hoping not to win, but instead to feel the stinging pain of loss. I know it’s wrong and because I know it’s wrong I work really hard at tempering my emotions!! But this long term tempering is wearing me the fuck out!! All political rants get deleted from my FB feed so I don’t get angry. If an argument starts I do my best to walk out of the room or tune it out by acting dead or stupid, much like a fainting goat! I have figured out how to curb all this anger when cornered by using a tried and true method of striking first with wicked biting sarcasm! But sometimes that bites me in ass when I take it to far and then hurt someone else’s feelings! I can’t win! Developing these weird coping mechanisms are only piling more worry and angst on top of an already over loaded emotional mountain! Yet I keep doing it because going through this joint struggle over the last three years I have found there are more important thing for me to focus on in life! Like waking up, or breathing!

And there I am wondering if God is really giving me what I can handle or if it’s all a big fucking lie!

Today really brought it home for me and it hit me harder than before. A friend posted a picture of my beautiful wife from five years ago and through all my inspirational quotes, kind words and such I realized why I am in this strange place mourning for the loss of my wife. Not that she is gone in the traditional sense of the term, because she obviously isn’t, but for who she used to be! That woman, that confident, beautiful woman who could teach 30 kids in classroom, come home and ride horses with me and the kids, whip up a dinner from absolutely nothing, then toss her hair into a pony tail, throw on some clean clothes and let me strut her sexy ass out on the town!

I hate what the drugs have done to her, I hate what this disease has done to her, I hate that everyday she wakes up and no longer recognizes the person looking back in the mirror and sobs. She’s had me cover all the mirrors in the house so she doesn’t have to look at herself and that makes me mad at God. I hate that she shakes so bad she can’t hold simple items and there is nothing I can do help! I hate that she struggles to get up, walk or climb stairs! She was once a toned, hard fitness instructor and now is a frail version of her former self! I hate that I feel like I am failing her, and I can’t do a thing to make any of this any easier in any way! I hate that she doesn’t know how beautiful I still think she is or how she continually stresses over some imaginary thing that should drive us apart!

I hate, I’m angry so I hate some more and I think again; God will not give us anything we can’t handle.

The realization that I am also mourning the loss of OUR life together weighs like an anvil around ones neck. I go to parent meetings alone, doctor appointments alone, after school activities alone and rodeo with the kids alone. She is miserable because she can’t be there for her children and it is a horrible heavy guilt for her and I am torn up because I can’t imagine how that must feel as a mother. Now, I don’t mind being alone, it’s good to be alone every now and again, just not all the time. Thankfully I am surrounded by some of the most wonderful, caring families anyone could ever ask for and they treat my family as if we were part of their families! Rodeo families are hands down the best in the whole world!!! I seriously look forward to seeing these people every month! But at the end of the day, when everyone goes there separate ways, I sit alone, in the trailer, pondering what life would be like, if Jacy had never gotten sick. All of the fun she is missing out on and how guilty I feel when I forget for a moment and start to have fun myself.
Then I’m mad it’s not me. Jacy is something special. I am not. She has done almost everything right her entire life. I have not, in fact I spent most of my early life doing just the opposite. She is kind to everyone, I can be a bit of an asshole. So why? Why has God burdened her with this punishment and left me alone? Why is God putting this upon our family, our children, our friends and relatives? Is it truly because God thinks we can handle it? What kind of bullshit is that? Does that mean people who hold no struggles are weak in Gods eyes so they get a free pass?? That makes no damn sense!

I always say we need to have faith. Believe in our faith. I believe in God. I believe there is a reason all this is happening. I believe we are being tested. I believe there is a plan and I hope God reveals it soon for as of now I can no longer see the Forrest for the trees.

The fact is pride is what leads us to believe we can conquer all without help or faith. It is how this simple statement I have repeated and lamented over continues to come forth.

“God will not give us anything we cannot handle.”

In reality it reads: No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it.” (1 Corinthians 10:13)

The way I read this is as such: God WILL give us all more than we can handle. He will challenge us, challenge our ability to retain faith and he will forgive us our temptations.

I believe my faith is strained right now. I believe we (my wife especially) have been given way more than we can handle. I believe the temptation to just quit is great.

So…..

God, could you give us just a little help? Please….

I’m not sure how much more of what you are giving us we can all take.

(Fuck I’m crying again)

2017 a story not yet written.

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.

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!

 

 

 

 

 

Let’s go, let’s show, let’s rodeo.

Red was loaded down. The old truck held every conceivable piece of equipment one needed for a successful weekend. Saddles, bits, hay, shavings, chairs, clothes, food and one 33 foot long trailer. Three horses tucked neatly together separated by aluminum dividers munched on hay pressed into a bag that hung directly before their faces.

As we pulled out of the driveway the truck sputtered a few times, we even had to shut it off once or twice to reset the computer so she would keep dragging this heavy load. But no one cared. Any other weekend old reds antics would bring a look of nervousness upon our faces, an eye roll or two that this 208,000 mile beast was acting up again. But on this day we carried a bit more weight, and with that weight came a feeling of ease. Like we couldn’t do any wrong. I have to admit, even my feelings about whether we would make it or not waned.

For in the back seat, smiling from ear to ear, nestled between her two smallest children with a bag of needed supplies at her feet was Ms. Jacy!

Ms. Jacy had decided after two years of missing out on rodeo, not being a part of her children’s lives, unable to laugh and have fun in camp at night with all our friends, she was going to this rodeo hell or high water! No cancer, no leukemia, no AML, no bone marrow transplant, no GvHD, no nothing!! And so after carefully packing her bags, loading supplies into the trailer, GO, is exactly what she did!

There were plenty of worries/fears to go around. What if it is too dusty for her lungs to handle? What if she has an issue with her breathing? What if she becomes so fatigued she can’t move? What if she develops an infection from being around the animals??? What if, what if, what if?????

What if she was never able to personally witness the joys of her children participating in the one activity they really love ever again? Yeah, we believe that one thought outweighed all the other “what ifs”.

In reality, Ms. Jacy has been getting stronger. Her lungs still don’t want to fully co-operate, and neither does her body, but she has taken the stance of what doesn’t kill me should make me stronger! With that stance also comes a belief that she can look at life two ways.

  1. Sit in the house all day waiting for things to change, hoping they change, praying they change then regretting having done nothing but wait.
  2. Muscle through the pain, the discomfort and focus on what’s important. Living life, any life no matter what that life holds because in the end you can sit and watch it go by or jump on board and ride the wave!

Now as her husband I cannot lie, she worries me constantly. But if you know my wife then you know there is nothing, and I mean NOTHING anyone can say or do to change her stubborn Cuban mind once it is set!

So with that being said, she came along, which is exactly what we all wanted and it was a fabulous weekend! She was so happy to see her close friends, to watch her children perform, their children perform and to just be a part of life again! It was tough at times, by mid to late afternoon her feet would swell, she would be exhausted, but the kids were great, her friends were fantastic, and she never, not even once felt like a burden to anyone!

At one point during the rodeo we came back to find a poster on the side of our trailer! It was created by all the kids and it told of just how much she was missed and loved. It melted her heart.

Each morning she awoke with a smile, ready to watch rodeo, participate in any way possible, drink coffee, take pictures and catch up with people she hadn’t seen in years. It was the very best therapy anyone could have asked for!

The kids all did great! It was the best first rodeo I can remember in a long time! Oh Jessica struggled with her new horse and at one point actually fell off (of course she laughed at herself), Jake had a great Saturday but a stubborn Sunday and Parker didn’t quite get his steer wrestled, but it was a weekend filled with laughter and plenty of smiles.

Sunday night the traveling circus rolled back onto the ranch. Old red made it without a single hiccup which I found unusual. But as we cleared the front gate and rolled towards the barn, there lay three people, all half asleep, all exhausted from the weekend, all with looks of contentment upon their faces. (Jess rode home with friends) It was a thing of beauty.

Now of course this was short lived for as soon as I parked they all abandoned me to unload everything as if I was somehow their personal servant or barn boy which of course sent me into another stratosphere!!! But I digress…. Deep breath…. Phew…. Ok….

The point being, for a weekend, our family was back together, doing what we love, with momma in the stands cheering them on, sending them momma powers, and good mom mojo while I worked the arena, helped get horses ready and coached them along. It was the way it was supposed to be at that very moment in time. A step closer, as if life was almost back to normal.

It was a perfect weekend.