Time for a holiday drink?

Black Friday has come and gone leaving those of us who remember Christmas of old wondering why, and how we as a society ever allowed ourselves to believe this consumer orgy was ever ok. Every blogger under the sun has pounced upon Black Friday so don’t worry there will be none of that today. It was merely a blip on my mind leading to another topic dear to my heart.

My entire blog for the last two years has been devoted to my lovely awesome wife Ms. Jacy. When I started this blog it was about family, fatherhood and the joy associated with raising children. Instead much like a Sunday goulash (only older people remember our parents making that little tasty number) it’s combined many facets of our life. I am thankful for all of you who faithfully follow my writings and the kindness you have shown is flattering to say the least. But today, if you will allow me, I am going to step away from Ms. Jacy (please keep reading) and return to why I began this writing exercise in the first place. Fatherhood.

As I stated, Black Friday has come and gone which leads us officially (Wal-Mart be damned) into the holidays. Friends, family, co-workers, festivities and wonderful Christmas parties await us around every corner. It really is the most wonderful time of year and for many it is anticipated all year long.

Including our kids.

Over the last few weeks several conversations have arisen between myself and other parents in regards to underage drinking. With the holidays approaching and school soon to be out it appears to be an even hotter topic. Don’t be fooled our children are participating whenever and wherever they can. It is disturbing how easily it has become regardless of rules, laws and such for our children to actually obtain alcohol. Thus a serious problem lies and the temptation is no less for my child as it is for yours.

Those who read my blog and have known me since childhood also know for me to speak out about underage drinking is akin to the pot calling the kettle black. So let’s set up a little history.

I began drinking at 13. It was easy to acquire, just hit the old man’s Black Velvet stash and replace with water. (Yeah I know the kids think they invented that trick but it’s been happening for generations) As I became older it of course was a rite of passage for many parents who condoned drinking and had done so feverishly as kids to pass that legacy on to their children and friends, so obtaining alcohol was no big deal. Of course the “rule” was you don’t leave whatever property you are on while imbibing, but that rule was never followed.

Everyone has an argument as to why they drink/drank. Either to be cool, fit in, hide from something or someone in their lives or just because. I drank to fit in, I also drank because I was very unhappy, drinking allowed me to open up, act the fool with no repercussion and pretend to be something I was not. As we grew older the alcohol grew in quantities and the locations in size as more and more young people like myself congregated to our little gatherings. Whether up on the mountain, cruising in the next town over, down in the sloughs or the backyard of some approving parents’ home we partied and we partied hard. Laws be damned!

It all sounds glamorous doesn’t it? Fun, fun and more fun! We were young, we pretended to be adults as the image of alcohol portrays and we survived or at least most of us so what’s the big deal? Right?

Somewhere between my sixteenth and seventeenth year at a party my consumption reached the limits of my body. To this day some 32 years later I do not remember the event I am about to describe. What I know came from friends who witnessed it and the parties involved. I have carried great guilt over this for many years and as a fireman it is what keeps me trying my hardest to keep teen drinking in the spotlight.

Having consumed way too much for some reason I decided to climb into my father’s 1963 GMC and drive home. Now once again I remember none of this, what I do remember was waking up the next morning to my father feverishly wanting know why his truck was missing a mirror and had damage to the hood, door and cab. I didn’t know. Of course being an outraged man further fueled by the stench of alcohol within my room that answer didn’t sit well. What I later learned was while driving away from the party, I struck another truck parked on the side of the road and drug it for a bit. There were people outside and it is amazing no one was hurt. Terrified of what I had done, I did what any other immature young moron would do, I lied.

It wasn’t me, how could I have done this? But it was all true and the sad thing is, instead of curbing my drinking it only pushed me further into a bottle.

By today’s standards that would have resulted in my life being irreversibly ruined. An arrest, a court date, a law suit from not only the involved but those who witnessed the incident claiming mental stress. My parents who had nothing would have lost everything! Why? Because of my ignorance, because of the ignorance of those around me, because at that age making adult decisions is not an option, let alone alcohol fueled decisions.

But it was 1983/84. A different time for sure. My father owned a restaurant in town very popular with local law enforcement and I cannot tell you how many times an officer would say; You’re Bobs kid aren’t you? I would nod yes, use my best level headed Eddie Haskell and with license back in hand head to the nearest friend’s house with a promise my 64 Chevy or my 81 Chevy would no longer be seen on the streets of town. That would never happen today!

Jump forward ten years and beyond. I am at the sight of my very first vehicle fatality. I remember it like yesterday. The car was an 84 Buick, it sat roughly 18-24 inches off the ground wrapped around a tree. A 18 year old male and 17 year old female still strapped into their seats compressed into a space of no more than 4 feet wide. I watched as life drained from their faces. Their eyes once glistening upon our arrival now flat almost sandy looking with a distant far off gaze. They say you never forget your first on scene death, the ones you just couldn’t rescue and “they” are right. Many have come and gone, some have stuck with me more than most, but your first, Yep that will be with me till the day I die.

They were drinking. They came from a party. They promised to not go anywhere but I imagine when you are in love and the car is right outside there are plenty of reasons to head off under a moonlit sky to find solace in an orchard. They were probably just working their way through that “rite of passage” we all talk about.

How about a car load of senior girls from the next town over headed home from a party? They too had all been drinking but the funny part is they didn’t cause the accident! 70 mph in the fast lane when two others jostled for position causing an accident that collected them in the process. Their car hit the medium and rolled several times. Funny thing about drinking and driving, sometimes you forget the simplest of things, your house keys, your phone, oh yeah; your seatbelt. Young ladies strewn everywhere! 3 on the ground. My patient, she received an on scene tracheotomy. It was to no avail. Her friends? All gone. Why? Seatbelts…….

Arrive at a house where the parents have been away for no more than an hour. What do they find upon entering their residence? Their underage son, angry he could not attend a party with some friends for New Year’s Eve has decided on his own to polish off the family bottle of Tequila. Yup he is a genius. When we arrive he is nothing short of the devil himself. Fighting, spitting, swearing and rapidly disintegrating as Tequila takes over his body. He was safely transported and survived, but what we learned later, just barely. He had consumed enough alcohol to quite literally walk the line of death. Why? Because News Years parties are a rite of passage! His parents made the right choice but it didn’t stop him from continuing down a very dangerous path.

I don’t want my child drinking. I know it makes me unpopular with many, but I don’t care. Drinking and screwing off cost me ten years of my working life. Drinking and screwing off almost cost me a future. Our children all have bright futures if we show them the way! The right way! Not some antiquated thinking that results in time and again others being hurt or dying! You can sit there all you want and claim you have it under control, it won’t happen to your child BUT YOU ARE WRONG!!!

Have you ever had to tell someone their child, friend or even adult friend or child is dead? I HAVE!!! There is nothing honorable, fun or even remotely great about that moment! It stays with you, eats at you, and gnaws at your soul! We walk around with our heads in the sand thinking everything will be ok, but guess what? It won’t! Not one adult parent I have ever spoken with has said; well I expected this to happen! Nope it usually begins with why? Then leads into; he/she was supposed to be at so and so’s house! Followed by I didn’t even know they were doing that! Yep that’s how it is!

This has to end. We as adults need to break this awful chain. We can keep going around year after year counting our blessing, being thankful it isn’t our child but then when we let them drink are we really acknowledging that we understand the consequences? I think not.

Every year at this time I usually post some little paragraph about holiday drinking, driver safety and hoping everyone I care for stays safe. But this year I hope by opening up about myself, my past, the future that lays before all of us with teenage children you can see, it is not up to them! Oh they bare some of the responsibility, but really it starts with us as parents. If we preach no drinking, hold them accountable for their drinking habits and hopefully do a good enough job of showing the possibilities before them without making a critical mistake we can stop or break this chain once for all.

It is our job to make the hard, unpopular decisions. It sucks! Make no mistake, there are times I would much rather be my child’s friend, but I am not! I am something much more important than any friend will ever be, I am their father.

Listen I am a realist, I know my little blog isn’t going to do a thing towards stopping this generational fueled epidemic, but please, this holiday season take the time to know where your kids are, what they are doing and help me try to break this chain of alcohol abuse. Nothing would make me happier than to never hear or witness another young life lost way too soon.

Thanks for making it all the way to the bottom of this page, I promise a cheerier post tomorrow.

 

 

What????

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Never in my life have I seen anything like this and trust me I have seen some crazy ass shit! Last night I came home from the hospital, distraught, worn out, fearing for my family, my wife and myself, for you see the thought of losing the very center of our lives, my wife, their mom was overwhelming to say the least.

So I put out the call!

I have said it before and I’ll say it again, I believe in faith! Now faith is a funny thing, there are those who believe it ties directly to the bible, some believe it is a feeling or an attitude, while others believe it is a positive energy randomly floating throughout the universe! Either way my beliefs are not what matters here, what does matter is as long as I can remember having faith in something is what’s kept me alive and running. Without faith in myself, in God (yes I am one of those) and in the ability to keep an inner positive attitude no matter the situation without disturbing anyone else’s emotional process, I could not have survived these 49 years. Faith has proved me right more times than not and when faith let me down there was always something to be learned from that experience.

Prayer warriors

Wow! There is definitely something about prayer warriors that is mind blowing! Everyone I could ever imagine along with their friends and friends I don’t even know, joined the prayer warrior cause! Last night and this morning I was completely blown away by the amount of people saying prayers for my wife! Even the Atheists in my group were hoping for positive energy to encompass my wife’s being! To say I was humbled by it all is an understatement! I personally believe in the power of prayer, there is something to be said about a mass of people converging their beliefs and energy into one combined focus to accomplish a positive result.

It worked!

That’s right ladies and gentlemen, it freaking worked!!!!! We went from end of days through the doctors own words to; hey there is a possibility you might make it out of this mess! That is huge!!! Thank you, thank you, and thank you!!! A huge thank you to every one of you who prayed, focused, thought or said a kind word while moving through their day. I have said it before and I’ll say it again, she is my world and to see how many people are in her corner is astounding!!!

So here is the gist of things!

Today her doctor came in to report the test results from yesterday’s exploratory investigation and it looks as if the bleeding has slowed down in her gastrointestinal tract. (YAY!) Her lungs continue to be an issue but they are not as concerned as it appears treatable. So after hearing the day before that her body needed to wake up and start working or else! We’ll that’s just what it did! The doctor then went on to talk about another patient who had similar issues to Jacy’s and after a year in the hospital walked out a free man! This man now runs marathons and lives a fairly normal life. Yes he is still plagued with GvHd issues but he is healthy, home and living life to the fullest!! Doc also explained that even though Jacy’s road is going to be rocky (paraphrasing) she has a shot at making it out of the damn hospital! Woo hoo! THAT IS ALL WE HAVE EVER ASKED FOR!!!!!

So to all you prayer warriors again I humbly say thank you!

I don’t care what you believe, there is definitely power in prayer, and positive thought! We owe it all to you guys! Everyone came together, praying as hard as they could and it worked! This morning I opened FB (Facebook) and was blown away by how many people took time to remember why they either liked or loved my wife! People were sharing positive memories of her and I must say, seeing some of you change your profile pictures to a memory or personal experience with my wife was so incredibly touching! Looking up from the screen it was raining, but only behind my glasses! I swear when this is all over I am throwing a huge BBQ, inviting everyone and I plan on kissing or hugging every person who has ever thought a kind thought or prayed for my wife! I spent last night dreading the worst and today I feel positive energy abounds!!! Jacy also feels as though a weight has been lifted from her shoulders, she is still scared of the unknown but there is hope and hope feels pretty darn good!

Keep them prayers coming people! Let’s harness all that positive energy and prove once and for all it just isn’t this woman’s time! She has plenty to do here still on earth and a husband who will stand right beside her!

Once again! Thank you all! I love you, Ill pray for you, and hopefully one day soon I will pay it forward!

Love is something special

Yesterday I sat with my wife on her hospital bed. Leaning into me we listened to others talking in the room and I staring longingly at her once again realized I am a very lucky man.

It is very easy to fall in love. The world is filled with interesting, beautiful people who intrigue and excite our lust for closeness. Each person’s definition of love is different, thereby allowing varying levels of intimacy amongst those parties involved. There is love acquired over time, love by design, and love at first sight. There are people who know a particular person is the one for them right away and while pining away for their affection develop love through mutual interests. It takes a special person to not only peak those interests but keep them thriving. A person who is willing to walk side by side supporting and surviving every possible situation one could develop or live through over time. For you see, love is not for the faint of heart or quitters.

There she sits. Yesterday while staring at her it came to me that I missed her more than I let on at times. Everyone at the hospital gets to hear her laughter, see her smile and relish in her constant silliness. All the things I took for granted or at times bothered me because of my own selfish moodiness I now longed to have back in my life on a daily basis. I was actually jealous of their ability to bathe in her good Karma.

Today someone sent me a picture of an actress on a current show (I won’t give the pleasure of repeating its name because this show is sheer poppycock) and stated she looked just like my wife! I dismissed it and then after coming back to this picture three, four or five times it dawned on me they were right! Just like that my selfishness missed her hair, her eyebrows, her eye lashes, and her round face with make-up, wearing a slinky dress on date night or goofy overalls on the way to school! I miss the way she smells, her choice of lotions always leaving her skin smooth and soft. I miss her holding me tight while dancing, whispering in my ear “I love you”. I looked at the picture of this actress over and over and I yearned for the wife who at one time didn’t have Leukemia.

I am a very lucky man

Most people felt that way at one time in their relationships but having grown used to their partners they no longer feel a longing deep inside for their significant other. Time, life, work, children and school have robbed them of time they should have spent with each other, instead creating a divide and conquer relationship which ultimately leads to a divided relationship.

I long for her to come home. I hate leaving the hospital, I want to stay there all the time. To hear her laugh between coughing and vomiting. To watch her smile even though the news she has been told sucks. To hold her hand even when she feels as though she is a thousand degrees. To walk with her down the hallways even though she must have help from a nursing assistant. To sit and eat lunch like two old people with no teeth! She with soup and me complaining there isn’t enough candy in the drawer.

In the past we too were a divide and conquer relationship! I divided to conquer and she wanted us to handle things together. She never gave up on me even though there were many times she could have, many times I may have needed to talk her into one more chance, she calmly continued loving me. Stubborn and tough she never ever gave up, she always knew that even though I was going to fight, kick and scream, I would come out the other side, wiser, gentler and more giving.

That is why it’s my time to be there for her! I know she is kicking and screaming on the inside! So I keep her going, telling her it’s going to be all right while showing her how to remain calm, think things through and understand there is a better tomorrow for her waiting. When this is over and she comes home she will have known I never gave up on her, I calmly helped her to understand it is ok to feel sad, ok to feel frustrated and ok to want this all to end as long as you vent it all out and then restart towards the finish line. She is fighting hard, but she is not fighting alone. She is not superwoman, she did not become the fighter she is today without losing a few rounds in life. She will come home knowing I love her with all my heart and soul, and I am thankful for all she has given me.

Our lives will never be the same. Leukemia has made sure of that. But what our life will be has yet to be written. An open page awaits us and as much as I long for the wife of days gone by, I cannot wait to see what life has in store for us as a team, a couple, as friends who are lucky enough to be married to one another.

Like I said; it is easy to fall in love, staying in love is something very special indeed.

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When a mullet is more than a mullet.

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It came from my mouth like venom through a snakes bite. Over and over again I struck, not just during one opportunity but through countless encounters. My victim continually wandering into my lair, setting himself up for attack, never backing away but every now and again wincing just a little. It was cruel and at first unintentional, but intentions can change with the wind, leaving the recipient wondering what the hell. Soon every attack had intention and meaning, usually in front of others as if it made me a better person for calling out my victims perceived flaws. It didn’t. My strikes were evil, demeaning and showed that I was nothing more than a full-grown bully. Others would join in and like a pack of hungry dogs we feasted upon our victim’s distress. Gnawing, tearing away at his very fabric, and never once thinking about the consequences or where it may leave him emotionally. All in the name of the past, our perception and what we felt was humorous.

Last night, awake, staring at the ceiling, my mind raced over the last few months and how hard it’s been for me to keep mentally strong. Focusing directly on each child’s needs, where I may have succeeded and where I have failed. Wondering about the future and what it holds for this family I continue trying to plan the next step. Our children will need their father to be overly understanding as emotions are high. My game needs to be spot on as to not let them get away with things they shouldn’t all while easing up just a bit allowing them to feel whatever emotions they feel in regards to their mothers absence.

My daughter and 15-year-old son have presented the largest challenge.

Parker knows who he is and is very comfortable with himself. He tells you how he feels and makes no bones about you overreacting to any portion of his mental/physical/educational progress. His mind in some areas is a bit regressed while in others he is wise beyond his little 10 year old years. Lately though school has been a significant challenge for him. Myself, the school and a dear friend who has been assisting him at home have all come up with a solid game plan to keep him in play. We want him to rodeo badly as we think it will be a good distraction and it is after all what we do as a family. He wants nothing to do with rodeo and fights us at every corner. Frustrating to say the least.

Jessica my 11 year old daughter is coming into her own. Straight A student who always strives to please. She is currently expressing herself by being defiant, to everything, and I mean EVERYTHING! She has a problem controlling her weight, it is a giant burden for her that she takes very seriously. Since mom has gone back into the hospital and been gone for these four months I recently found she is sneaking food at night again. A sort of coping mechanism for her emotional status. She hides the food out of fear. Fear that she will get in trouble for eating after hours. There was a time when this was a huge issue in our family and we even went as far as building caged doors for our pantry to keep not just her but all our little vultures from eating us out of house and home. She is struggling hard, not just with the eating, but back talking, arguing, and picking fights like a drunken sailor with only hours left on shore leave! Somedays she marches around with her fists all balled up and you just know, like a back alley brawl it’s about to go DOWN!

Our rodeo cowboy Jake has also been “bucking” (see how I did that?) the system as well! He hits everyday toes turned out, hand locked tight ready to turn out and hit it hard. More times than not he hits the dirt hard, but the boy saddles up and just keeps trying. Jake too has been working at finding his place amongst all of this family drama. He carries a lot of responsibility when it comes to the ranch and he is such a large man sized boy I often forget he is just that; a boy. He struggles with his grades, constantly. He is also struggling to make the right decisions when it comes to friends and after school extra-curricular activities. We have all been there and I think it’s why we want better for our children. I have made no secret about my past, about my high school experience. I chose the easier way out and I need them to learn from those mistakes. Taking the easy way out put me close to ten years behind in life. Unfortunatley like his father he has this need to experience things, to learn the hard way, and it scares the shit out of me. We have been butting heads very hard over the last few weeks to a point I feel like we were going nowhere. Lately besides grades, his behavior and his decisions when presented with an opportunity to run astray with his friends have not been good. I have also been riding him pretty hard about his new, old school hairstyle. Emotionally he looks like a beat dog.

So here is where I am going with this whole thing.

Today as we are preparing for a family visit with Ms. Jacy my gander hit the fridge. There upon it is 20 or so pictures of our family from over the last two years. Do you know what I saw? Our kids, our happy well adjusted, personable children. Smiles on their faces, hugging their bald mom, laughing with each other, holding up trophy buckles, works of art, hugging the dogs, yes the dogs are family too! Our children that I spent all night worrying about how I was doing as a father all looked ok. Each one showed their own style! Their own version of who they are at the very moment a shutter froze them in time. I saw four individuals, four young people choosing their own paths regardless of anyone else’s wishes and doing it with confidence. It was an amazing moment filling my heart with joy! But you know what stuck out the most? Jakes mullet.

Jakes mullet stuck out like a white flag waving from the trenches! Telling me it was time for me to wave that flag, surrender and ask forgiveness. For you see each one of our kids has something I constantly pick at, like a good parent should! You know, a slight course adjustment or suggestion to help them understand they aren’t fitting into a classification, a social mold if you will. A couple of things dawned on me in that very moment. One, why should our children fit into any classification? Are we not supposed to allow them a certain freedom to find out who they really are? If that means some heartbreak now and again then so be it! It will teach them how to handle themselves in tough emotionally charged situations. And two, no matter the other out of the norm issues I had in fact been particularly hard on Jake and for what? A chosen hairstyle?

When Parker said no to rodeo, claimed art as his thing and took to ditching a ball cap in favor of a flat brimmed drivers cap making him appear very artsy in deed, did I scoff at the notion? Hell no! In fact it is 100 percent ok that he hates rodeo, horses and all that goes with it. That is his choice. He has tried it, given it a good go and ended up in the hospital a few times! Trust me his thought process may change at some point and if it doesn’t so be it! That’s who he is, we love him for it and by the way the kid is very creative! His art shows a caring heart, personality and great love for all things.

When Jessica started stealing food from downstairs to hide in her bedroom. Eating at all times of the night even though we spent countless hours chastising her for such behavior did I freak out? Well YES I freaked out! I freaked the hell out! Worried my daughter’s weight issues would expand, she would be uncomfortable with herself and have huge body issues as the result of bullying! But somewhere along the line I realized the problem was not all her, part of the blame was us, more importantly me. So I pulled her aside and let her know it was ok to eat. If she felt hungry, just eat, take what you want and eat it. My only rule? Let me know you are going to eat so I can approve it or find you an alternative. She looked shocked as though the words coming from my mouth were some form of cruel joke! But nothing shocked her more than when I told her as long she is comfortable with herself, as long as she can look in the mirror and love herself for who she is, then who cares what anyone else thinks. My job is to educate you, help you make the right choices and hope you come away a strong and confident woman. If that strong and confident woman is what society deems as overweight or out of the norm then tough shit! I told her I loved her and gave her a hug. She left with a huge smile.

One thing I have repeatedly told all my children is find who you are, embrace it, make the most of it, discovery is how you find yourself so that when you are an adult you can be happy with the person you have become and you will never shrug off reinventing yourself. Yet here I was tearing apart those very values by continually ridiculing, mocking, terrorizing and just plain bullying my son over a stupid haircut! Now let’s be frank, the mullet is hands down in my opinion the dumbest looking haircut around, conjuring up images of Billy Ray Cyrus in two sizes to small faded jeans jumping around like an idiot! But that’s just it, it is my “achy breaky” image of what that haircut means to me. To him it represents several of his rodeo heroes, men he looks up too, that he wishes to emulate! I am sorry that just isn’t a bad thing and if it is what defines him as a person right here, right now, then so be it! This is how he takes those words of advice and runs with them, learning, crafting and molding the person he wishes to become! Somewhere I lost that, somewhere I felt it was ok to tear him down over and over again. On the fridge there was a card with a picture of him with both long and short hair. You know what? He is the same kid! The kid I love for who he is, not what his damn hair looks like. Today I sent him this text.

“Hey, just wanted to tell you something that’s on my mind. I know things have been rough lately between us, I hope you are learning from each encounter as I am learning from them as a father. I believe you are trying your hardest in school so don’t let yourself down. Continue to strive to always be a little better for yourself, not for me. I realized today I need to lay off you about that damn mullet. I have spent my whole adult/fatherly life preaching to you kids to be your own person and yet I contradict myself by giving you crap! If that hairstyle defines you right now then so be it! I apologize for all the grief I have given you. I am proud of you for being comfortable with who you are and that is one of the most important things for any young man to achieve. Keep up the good work, have a fantastic day, I love you…”

He replied by saying thanks dad, it’s just a rodeo thing and I don’t care about the mullet grief. I am working hard on my grades and I love you too.

Maybe it was just me.

So bring back the mullet son, business in the front, party in the rear! Either way, a mullet, a few well-placed photographs, and a sleepless night all combined so I could learn when fatherhood crosses the line into parental bullying, ending with the discovery that your child, hell your children are really doing just fine…

The wedding crasher…

Standing in the shadows of an open dimly lit arena. Sparkling white Christmas style lights strung through roofline trusses bring a serene glow to this event centered on two young people professing their love. They stand before family and peers, nervously speaking as to this union, this moment, hands twitching bodies touching for support, faces beaming as if they just won the lottery. Little do these two know they have and it will take some time before they fully understand exactly what they have won and the stakes involved.

My eyes dart back and forth, as through a microphone sounds of tears falling reverberate across this vast space. I am alone, the woman I married is not here; she lies in a hospital room far away. My heart aches. There is something about a wedding that always brings it in for me. Whenever Jacy and I attend a wedding we always hold hands, we always relive that moment 14 years ago when standing in front of family and friends we said; I do. Looking into her eyes, no matter what our lives hold outside this very moment we always know we made the right choice. The sacrifices were worth it and every day brings a new sunrise, a new reason, and another chance to fall in love all over again.

Everyone is so happy! The tables clumped into groups, families tied together reminiscing over old times while devouring food and drink. I came as a guest, a friend of the grooms’ family. I knew hardly anyone which was refreshing. It allowed me a rare chance to sit and watch unmolested. Smile at new love, chuckle at old love still trying, and witness youngsters sizing each other up from the sidelines. All I could think about was my girl and how lucky I was to have her in my life.

A few weeks ago a wonderful woman was explaining to me how my blog moved her. She could not believe one person could write about the troubles that have befallen our family. How easily I share feelings the way I do, professing my love so publicly. Sometimes when I finish writing a piece I too have a hard time understanding what has come from brain through my fingertips onto the screen. I think about the kid who hated school, who struggled with bad grades, who lived only to party and cause mayhem with his friends. I wonder about individuals who held no reservations in explaining to me on a regular basis that I would never amount to anything and what they would say now. Heck, I believed them for a very, very long time.

My writing comes from experiences, from love won, love lost and love taken away permanently. Writing was never easy for me, it was and still is hard! But over time I have found my voice, my muse, my, well my being. It is my release from the day to day tortures that haunt us. Everyone has them, they are in different and varying degree’s associated with all aspects of our lives! Without writing them down, releasing them from my cranial vault, they would in fact weigh me down to where I am certain I would not be able to rise too any occasion. The writings on my blog are a mere fraction of what is stored upon an electronic cloud.

As this woman spoke so kindly of me her husband jokingly replied: Thanks James for ruining it for the rest of us. Now I have known him for a long time and his pithy comment was intended for a good chuckle. I took it as such chuckling along but as the weeks went on, it crept into my psyche, slowly gnawing at me without remorse. It has been eating at me ever since, chewing my insides like a cancer and we all know how well versed I am on that topic as of late. How have I ruined anything for anyone? This is my story not yours; I am only sharing this journey in hopes it reaches and helps someone else, another husband, partner or longtime friend traveling down the very same road! How on Gods green earth am I ruining anything for anyone?

I mean, hey, I get it, this joking statement admonishing me for somehow pulling my “Man” card from the file of all men by showing how I really feel about the woman who swore to spend the rest of her life with me is somehow wrong! Let me reiterate, I know he didn’t mean it that way, it was purely said in jest! As idle conversation to be laughed at! It is my own brain churning that statement over and over again as if I should carry some form of guilt for sharing anything! But in the end it only proves I suppose that some words, even the simplest when spoken in jest, combined the right way can in fact hurt.

After sitting on this for a while I began to wonder, have we as men lost our ability to show how we feel or express our love for another? How many years after marriage are we supposed to quit saying I love you? At what point is our relationship just an existence? Do we simply just cohabitate, thriving off the inadequacies of our significant other, never recalling what it was like the first time we held hands or kissed. Forgotten are the hopes and dreams of a young couple in love? Our lives drug down by normalcy, children, financial responsibilities, the suffering of our friends with whom we bitch to about those we supposedly love?

Jacy and my relationship is far from perfect believe me. We have both spent more than our fair share of times upset with the other over both important and trivial matters. It would go on for a few minutes, a few hours and on rare occasions a few days! It is part of marriage! No couple is perfect! I am more scared of a couple that never fights than a couple who fights, forgives and loves. But one thing about Jacy and I remains through thick and thin. We both LOVE each other unconditionally.

We have learned over time that being in love means learning how to forgive. Sometimes even when you still think you are right. Why? Because when you look into each other’s eyes you should still see that glow, a glimmer in the corner that lets you know she loves you and the person you met all those years ago is still there waiting only for you. You should be able to answer without a doubt what it is she brings to your relationship and why you admire her for it! She should be able to respond instantaneously in the very same fashion.

Listen, if I am ruining things for everyone else, then so be it. I didn’t learn all of this the moment I was married. The person I was before my wife was someone who was angry and in pain. I trusted no one, and put walls up all around me, shoving those closest away. I was self destructive and brought a heavy toll to those who surrounded me and it has taken years of talking and listening to turn myself around.

When Jacy came into my life it was a revelation. I knew, she knew, we both couldn’t believe it. We both fought against it, but we knew. The day I married her my heart exploded with joy and in no time she took to loving me as no other had ever done. She loved me for who I was, what I was and because I was me. Since then I can without hesitation tell you that over our 14 years she has changed me from a arrogant, egocentric, self-centered man to the person I am today. ( I know, not much different right? Ha Ha) I truly disliked who I was before and without her pushing me when I didn’t want to be pushed, picking me up when I had fallen down, believing in me when I felt there was nothing left to give and showing me how to care for others. Without this woman, today I would be a miserable human being inside and out.

There is no way anyone will ever get me to feel sorry for being lucky enough to express my feelings. Jacy Franceschi is my wife, if you have ever met her then you know the instant joy she brings into your life. She is friendly, open and honest, she may say things you don’t want to hear, but they are better said than any wall or wedge being driven between two people over an inability to communicate. She will in fact give you the shirt off her back. Listen when you are down, help you to get back up and cheer you on when things are great. I have never known a person who can make friends instantly no matter where we are, and it is her smile that is her signature trademark!

What is happening to her is beyond unfair! For all she has done for so many it just isn’t fair! Not that God, or any other spiritual higher power you may believe in is keeping tabs on who deserves or doesn’t deserve to have cancer-Leukemia. But for me it doesn’t make sense. I am struggling with why this woman I love, who loves me in return should have to suffer this way. She once told me it was better that Leukemia happened to her than me, because she felt I had suffered enough in my life. That was a hard pill to swallow. But the reality is, I am still suffering, the loss of my wife for the last four months has been overwhelming to say the least! I miss her every day. Her smile, her kiss, her laugh, her down right goofiness at times. I miss watching her and Parker snuggle at night while reading, seeing her and Jake laughing over a goofy joke, I miss listening to her and Cody talk about dog training, I miss her and Jessica talking over the last softball game. I miss it all! It is my family and one person is missing leaving us very incomplete.

She is also the strongest woman I know. What she has gone through is beyond words. There is a reason I only post pictures of her from behind. Out of respect. What Leukemia and the resulting GvHD have taken away from her is more than many of us could ever handle. She is gaunt, without any fat or muscle left on her frail bones. She struggles to walk daily, cannot see most of the time and her skin is mottled red. Her hands shake and she is constantly coughing like a twenty year smoker. She needs assistance to shower, move or go to the bathroom. Yet every minute of every day she greets every person who walks in her room with a smile. She asks about their day, how they are feeling, wanting know who is dating who, who has a child on the way and shows she cares, that she is more than just a patient, she wants to be your friend. She says please and thank you without hesitation and cracks jokes to anyone who will listen. Each time the doctor talks to her about progress she believes it will be next week or the week after that she will go home. Jacy has surpassed many others who tried but haven’t made it this far and she has done it with style, class, determination and grit! She refuses to believe there is any other option but to go home. She is simply amazing, she is my hero and I love her.

Standing in the shadows of an arena, under some twinkling lights, watching two people in love start upon a journey towards an unknown future. A smile breaks across my face, for they haven’t a clue and neither do most. They know they love each other, they know they are now husband and wife and that is all that matters right now. Yet their marriage now becomes about what they don’t know, the future and that’s the way it should be, there is so much waiting ahead for them both. As they walk out of this arena tonight, I only pray they remember marriage is not a fairytale it is in fact hard work, but the payoff is worth every single struggle. I could say I wish we could go back to that day, knowing what we know now, but it wouldn’t change a thing. We still would have done all the things we have done, fought for each other’s love the way we have over the years and worked our hardest to become better human beings. I wouldn’t have it any other way.

I said there is no way I will ever feel sorry for being lucky enough to express my feelings the way I do, and I don’t. I feel sorry those you don’t know how to express theirs. Don’t wait until it’s too late, because when it is, you cannot turn back the hands of time. Regret is an awful weight to bear.

Jacy I am coming for you honey, warm up those hands cause I plan on holding them for a really long time.

us

12 Angry Men…

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The summons stared me in the face like an angry, arms crossed child. Neither of us wanting to give in to the others wants and needs yet both knowing there was only going to be one winner. A summons for jury duty, reissued as a continuance had already been granted. Myself not really wanting to be there, instead only thinking of the re-arrangements to our already taxed schedule. But as 0630 rolled around and we stared at each other with contempt, I blinked first, the jury summons won thus off to The Halls of Justice we went. (Cant type it without hearing the justice league cartoon)

Standing in line with other prospective jurors it was blatantly obvious no one wanted to be positioned in front of this building. I meandered slowly towards the door, belt in one hand, anything metal in the other, doing my best to not look annoyed as I proceeded through a metal detector. Once inside I quickly found a seat and the waiting began.

Several times instructions were read. Our summons clearly states all blanks on the reverse side should be completed prior to arrival on your assigned date. Apparently only 10% of us understood the instructions or even bothered to read this nasty little note. Finally a representative arrived and began reading from a list of names. There were to be three groups. One group assigned to courtroom 207, the other assigned to 208 and the third group was to stand by as alternates. No one wants to be in the alternate group as there is no timetable assigned. Either you are released right away or kept all day long as jury selection trudges forward.

So a little known secret. I love jury duty! Seriously, I think jury duty rocks! I have been on a jury and was picked to be the foreman! It took four days total and was very interesting. You really have no solid foundation for how our justice system works until you have been on a jury! But under my current circumstances it was not appealing at all. But I was there and would perform my civic duty regardless.

As a young gal stood at a podium reading names for group one and two, I secretly wished they’d call my name. I know I needed to be at Stanford, and as confusing as it is, I also knew I wanted to be on a jury, it’s kind of like the two biggest kids on the playground picking teams! You pray you are not one of the last two kids left with two captain’s arguing over which one of you sucks less! So I sat, listening to an alphabetic order, praying F would be for me! Well I ended up in group three. Bummer, the dreaded unknown!

Then something happened, they readjusted their numbers and just like that! I was headed to courtroom 208! Five minutes later they excused all alternate jurors! DAMNIT!!! I could not win! So I resigned myself to a possibility of four or five day’s jury duty. Sitting in the courtroom trying my hardest to listen to our judge I couldn’t focus! I kept thinking about my wife, laying there wondering when I would arrive. Then it was the kids, how will I get them where they need to be all week-long? But the final straw was when I realized I had no idea what the judge was saying! I had been sitting in the courtroom for 45 minutes and the only thing I remembered was raising my right hand to be sworn in! Also I had become overly stressed out over my phone being completely shut down! One of the rules of the courtroom! What if Jacy needed to reach me, or her mom or dad? There was no way I was going to be able to survive this and still care about the defendant’s right to a fair trial!

The judge asked at 1145 for all jurors who felt they had a valid hardship in conjunction with fulfilling their obligation to serve to please form a line outside. She also asked anyone who felt they would have an issue with serving to please raise their hand. 30 people raised hands, all grumbling as they did so. I did not. No way was I going to be a slacker! Good men and women have died for our freedoms and with those freedoms come the responsibility to fulfill our obligations. We Americans have one of the best judicial systems in the world. It may be flawed but it beats the hell out of being thrown in jail to rot with no rights at all! So this guy wasn’t going to be one of those guys! That’s right! Damn proud to be an American!!

11:45- The line is long. I am third from last.

Oh shut up! I hear y’all now grumbling about all that patriotic shit I just spewed! The long and the short of it? There was no way I was even close to being able to pay attention. As conflicting as it was for once it was about me, my needs, and the needs of my family. I was sorry for the defendant, but I didn’t put him there and my wife needed me! End of story!

Walking up to the podium, lump in my throat, I really did feel guilty. The judge was really awesome, from the beginning she was funny, with great dialogue! She reminded me of Judge Harry from the TV sitcom Night court!

I placed both hands on the podium looked up at her as she said hello. I shook my head (I think she could tell I was bothered by what I was about to do) and said: I feel guilty standing here right now.

Judge: I have that effect on people!

Everyone chuckled

Judge: What is your name for the record?

Me: James Franceschi

Judge: Go ahead Mr. Franceschi

Me: I didn’t raise my hand earlier and for that I am sorry but you see my wife, well my wife had a bone marrow transplant in July. This date today was my rescheduled summons, a date I picked because she was supposed to be home by now. She is not. She has had every ailment possible and continues to struggle through setbacks at Stanford hospital. Therefor I don’t believe I would be a good pick for this jury as my mind is obviously elsewhere.

Judge: family is the most important thing and should come first.

Me: Thank you, and please understand I am who you would want on a jury. Every time I am called I look forward to being picked and the last time I was here I was not only picked but the other jurors picked me to be the jury foreman as well! I had an amazing experience serving as a juror.

Judge: Thank you for your service Mr. Franceschi and let’s just say this ones on me! Your service here is complete and thank you again. The court wishes the best to you and your wife.

Me: Thank you judge

As I walked from the podium I heard the judge say thank you again and that she wished others could have heard my testimony. Slightly embarrassed, I quietly said thank you again and after a moment with the bailiff I was on my way. I hope one day I am called again and it is in her courtroom so I can be a part of her machine. I am sure anyone who serves under this judge comes away with a smile.

Two hours later I was with my wife. When I am with her my blood pressure drops, my head stops hurting a little, my heart beats a little slower, my smile grows a little larger.

I busted Jacy out of her room for a stroll to the fountain. We found a shaded seat as she cannot be in the sun and even with a mask on her face I saw her smile through her eyes. The warm breeze upon her skin, the sound of water crashing down and a duck or two chatting away in the distance. It was amazing just being by her side, knowing it is, was and always will be where I am supposed to be.

After we had all the sun and fun we could stand, I rolled her back inside where she proceeded to walk not one, but two laps around the quad. This girl wants to go home and bad! Of course this left her exhausted and within a few minutes she was fast asleep holding my hand.

Two hours later the day was gone and I needed to say goodbye. I hate saying goodbye. I still hate walking out the door. But I do so knowing she is being taken care of by some of the best human beings I have had the privilege to meet. I love her and so do they. It shows every time I arrive and am greeted with a smile.

This week she is starting another experimental drug to help control her bleeding bladder. Please continue to pray for rapid healing as prolonged exposure to this drug can leave irreversible damage. But it is our only rational option. I say this because the other two options, the way I understand them would leave her either on dialysis for the rest of her life or incontinent.

A day that started out with possibly twelve angry men ended with one happy wife and one humbled husband who is always glad to have another opportunity to simply hold my wife’s hand..

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The fight..

She smiles whenever I walk through the door. Warm and happy, clapping her hands together with joy. As men and women we secretly hope our spouses are this happy to see us all the time, youth and a certain naivety lead us to these false hopes. We (husband and wife) eventually learn life will continually get in the way of how our relationships are portrayed within our imaginations. We have also learned over time that children, work, sports, school, social gatherings and general daily survival slowly tear down the very fabric our relationships were built upon when it was just the two of us.

Juuussst the two of us, we can make it if we tryyyyyy, just the two of us. You and I…

Sorry couldn’t help myself but C’MON!! You heard it too when I wrote it!!! Don’t shake your head no! You know it and I know it, you  heard it! Anyways….

Then Leukemia happens. It scares us to death! Just the sound of it. Leukemia. Yep it carries as much weight if not more than simply saying Cancer. Now we throw in remission, survival and cancer free. Re-lapse, Bone Marrow transplant, GvHD, success and failure statistics and well the emotional roller coaster of life and death drive you closer together. You begin to realize all the times you took each other for granted while expecting your relationship to never change or evolve. But it had changed. It had changed a lot. Of course nothing like you see on television, where there were secrets and you no longer spoke to each other. You know? Soap opera like stuff. No you both had settled into your roles as partners in this game of life. One handling the children’s education and transportation, the other handling finances, overtime work and building a future out of our property. The both of you sharing house and ranch duties, parenting, cooking, cleaning, laundry while you both try your hardest to equally dole out duties and discipline to our four ever needy children. Yes life can truly get in the way erasing the simpler times when you waited all day to see each other, then dreaded the moment you had to leave.

Every day I am home I cannot wait until I see her again. We don’t head out on a romantic date, no carriage rides, fancy dinners or moments alone in the park. Two people sitting sometimes quietly while the other sleeps, holding hands waiting for the next nurse to come in, ruining that moment of normalcy. I have said before I believe holding hands is the simplest form of compassion. These days it feels as though the nurse has walked in to interrupt us doing something we shouldn’t be, like teenagers hiding out in the barn. Yet we are simply holding hands, it is all we have.

6-7-8 hours within those four walls disappear in flash! I hate leaving! I hate leaving my girl behind! Walking out to the car I have learned to transform my emotions, change my demeanor, and count my blessings. For the easy road would be to remain angry at someone, anyone for what has happened to my wife. The once vibrant, larger than life woman has melted away to around 115-120 pounds depending on her water weight that day. Where toned tan legs once powered her successfully through a mini triathlon, two long bones remain, not one muscle in sight. Where long, gorgeous, curly hair rained down over her shoulders, a bald head remains. Her gleaming eyes and gorgeous face trying to peer out from under swelling and drug induced exhaustion. An athletic, active woman who rode horses and ran the perimeter of our property now worries about getting out of bed and walking a little farther down the hall every day. But I turn that all off as the building disappears behind my shoulders to focus on the positives.

She has beaten the odds so far and is still alive.

Jacy still has fight, lots of fight! Which is why she continues beating the odds! This woman, this beast wants to participate in double PT every day no matter how exhausted! Some days it doesn’t happen but she still tries! She continually defies nurses’ orders by getting up on her own to use the bathroom even though it is against protocol. Sitting in her chair for hours, sometimes all day as opposed to just staying in bed, waiting for things to change. Eating even though she has no desire to eat, drinking plenty of water and nutrition drinks which taste yucky. Using large rubber workout bands when she does stay in bed, hoping any little extra helps her to get home that much faster! Yep she is still fighting, like the angry Cuban stuck inside her, she is fighting and fighting hard!

So instead of moping on the way out the door, worrying about whether or not she will make it, I think about what and whom for which this daily battle rages. She fights first and foremost for her children, there is no doubt! Then she fights for her family and friends. She wants desperately to be there for all of your life changing events as a daughter, niece, aunt, mom and friend. It is what drives her forward when she begins feeling low.

Lastly she fights for herself, for you see she knows if there is no her, there is no me, and if there is no me, there is no her. Our love for each other has stood the test of time and will continue to do so. So she smiles when I come through the door, happy and giddy just to see me for a little while.

I sit down quietly, kiss her through all my hospital garb, and hold her hand. We smile, laugh, and talk. The hospital melts away for a few moments and I no longer see the woman waging war, but the soft, gentle, warm spirit I married 14 years ago.

We are winning……..

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Have we turned a corner?

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Everything is going to be alright, maybe not today, but eventually because beautiful things happen in life when you distance yourself from the negative and have faith.

Are we turning a corner? Has our journey gone the distance or is this just another phase filled with false hope? Will we be rejoicing or hanging our heads, heavy with burden and frustration over continued grief?

It appears as though Jacy has turned a corner in her treatment! Day by day, hour by hour, as her doctors continue slowly (and I mean turtle slow) reducing her steroids, she is feeling stronger! Her breathing has cleared up immensely, her intestines are somewhat co-operating, and although she remains on a steady regiment of Lasix, her swelling appears a bit reduced.

Walking these hallways is still a struggle but she is walking the entire hallway, not just to the door and back within the confines of her room! She is eating three meals a day! Although bland food and only in minute amounts it is a positive sign indeed for it translates to her body accepting nutrition!

Jacy’s doctor came in yesterday afternoon to announce they believe it is time to drop her dosage of Jakafi (experimental drug). This is huge! It means she is definitely moving in the right direction. It also means she is slowly becoming one of the 30% that survive this new experimental treatment! Her doctors will begin tapering dosages slowly and in segments. Starting today they will cut a few milligrams from the Jakafi then sit back and watch for 7-10 days. The fear being a relapse of GvHD (Graf vs Host Disease) which would put her right back at square one! Of course no one wants that, but at some point the process needs to begin and everyone on her medical team feel with all the positives lately, now is that time. Fingers double crossed!

Steroid dosages will also be slowly dropped again. She has done very well over the last 10 days since her last dosage adjustment which has been very encouraging. Jacy’s skin, still mottled with red marks, looks more like a giant stretched sunburn than the blistered, peeling abnormality previously covering her body. The doctor says her skin is healing very well and looks fantastic! Her skin looks so well he also announced there will be no more photopheresis treatments either! Such good news and having seen the previous skin condition I would agree with the doc, it does look fantastic! Don’t any of you become jealous when this is all over but she will have the skin of a teenage girl! Of course what would you expect, treatment is only a couple million dollars and you may die, sooooo…

Her immunosuppression drugs will also be adjusted as they fine tune its need in regards to controlling her new white cells and how they operate! This combined with a steroid reduction should allow her vision to improve over the same 7-10 day period barring any type of re-lapse. Her periods of visual acuity have improved, but she seriously cannot wait to be able to see again 100%. I tell her no hurry, she may end up with perfect eyesight and realize what a mutt she married and dump me! Ha!

So are we turning a corner? Does this nightmare possibly have an end date? I think yes.

Yesterday when I arrived her brother, mother and step mom where there and we all had a fantastic time laughing and joking about everything from family and friend dynamics to the absurdity of hospital existence. It was great to see her smiling and chuckling as though it was a normal family gathering at any one of our houses for any number of reasons! The only thing missing was good bbq and a bottle (or two) of wine. I felt great when I left her last night. I knew with all the energy spent with us she would most likely sleep well.

From the beginning I have touted faith. It is not something I just say, it something I believe! Whether your faith is absorbed in religion, a god, a spirit or just a continued faith in yourself. One should have faith, it helps quell any negativity and although I am also a realist, having faith has allowed me a better grasp of working my way through my emotions when they arose.

Does this mean I am no longer scared? No. We still have a very long road ahead of us in regards to a full recovery. In reality we both will remain scared for a very long time to come. A simple cold, cough or sniffle. Her feeling run down, tired or lethargic. Losing weight or gaining for no reason. Any mark, blister or lesion. All these things and more will have us running back to the doctor at a moment’s notice. Hopefully as time passes these feelings will pass as well.

For now, Jacy needs to get to the next level of care which involves her leaving the hospital for her dads house where she will begin daily outpatient care treatments right back at Stanford. She will be with family, in a familiar setting, living in an apartment that we have stayed in numerous times and that is a humongous boost for morale. Not just for her but the entire family.

The next level after three months of outpatient? Come home! I cannot even imagine what it will feel like for her to walk through our back door, live in her own house, sleep in her own bed, and not rely on others for care after possibly 9 months? I am positive she will need to work her way through multiple emotions associated with being gone for so long from her ranch, children, animals etc…

There has been nothing easy about this journey for anyone. It has been and continues to be an uphill climb. But when I think about where we are compared to a month ago, and how well she is responding to treatment in combination with her doctor sharing such good news yesterday? I say yes we have turned a corner and that uphill climb appears to be flattening out just a bit. None of us can wait for the ride down the other side of this crazy ass Leukemia ridden mountain!

Have faith, move forward, when you fall down get back up and try again. For if you have faith there is nothing to hold you back from success but you.

So to the question posed at the top of the page.

I choose rejoice….

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When a shower isnt a shower….

My chores are finished, children, horses, goats, chickens, ducks and dogs have all been fed. Walking onto the rear porch I look back as our ranch lays peacefully under a dusky sky, the sun bidding a final fair well. It is perfect.

Everyone has their own end to the day, a moment when the world stops and we are able to take a deep breath. Walking into the house the kids are chatting it up after dove hunting, and a hum of laundry shaking our houses foundation rattles off from the basement. Taking a moment to converse with each child, I relish in understanding the what, where’s and how’s of each of their days. My oldest has done another fine job of making sure homework is finished for me to check, their stomachs are full from the wonderful meals arriving and they have showered, washing away the days grime.

Ahhh the shower. Hot water rushing down my body, soap, a shave, it is all I look forward to each and every night. Its cleansing properties revitalizing me, relaxing my stressed out brain and allowing me the comfort of shorts and a t-shirt. My idea of pajamas.

I never realized just how much we take for granted the prospect of having a shower. While in Haiti showers were a luxury, yet our group was allowed a cold bucket shower each and every night during our first trip. The second trip to Haiti a year later left us an even greater asset, actual bathrooms with tiled showers! So we never really lost that sense of what it is like to not shower, to be clean.

Now there is always camping but I say; Camping doesn’t count! Most camping trips it is a rite of passage to see how many days one can go without showering! Of course being the manly men we portray ourselves to be, it never matters what our mouths and egos have arranged for a final shower date! In the end our wives, girlfriends or significant others ultimately pull the “you stink” card demanding a shower now or sleep alone, outside with mosquitos the size of VW Bugs. Yes dear!!!

Yesterday morning my wife called me. Now first off I was super excited that she could see the phone well enough to locate my caller ID! But then she tossed out this very exuberant statement: I took a shower on my own today and it was heaven!

You see Jacy hasn’t been able to see or get out of bed due to lack of muscle strength and motor skills, so to hear her say that she had in fact taken a shower on her own was, well, heart stopping! After congratulating her my first question was did you need any assistance? She said no because she was bad ass that way! We laughed and while she recounted every water drop and how wonderful it made her feel as she sat there basking in its warmth I thought to myself. How long has it been?

Before I could ask, she blurted out how much she missed being able to shower for herself, to wash herself, to feel independent enough to care for herself! It had been roughly 17 days of sponge baths, bath wipes and lots of cream or powder. 17 days of having multiple people handle you, wash you, and manipulate your body for efficiency while undertaking this task. Yes the nurses there are phenomenal, yes they care for each and every person like they were family. But when you barley have enough energy to eat let alone wash yourself how quickly would having multiple people handling your hygiene get old? Not to mention leaving you feeling just a tad bit defeated?

She went on and on, it was awesome to hear her happy, her voice still cracking, sounding horse and dry, but happy. Who knew the simple act of a shower (something we take for granted) would become an extraordinary event, allowing her to regain control of her life if even for just a few moments.

Which leads me to an update: Jacy is getting stronger, her doctor told me the day before yesterday they will continue weaning her off of steroids. The experimental drug Jakafi is still holding its own which is a good sign for now. There is still a plan B drug in place should there become an issue with continued use of Jakafi. Her eyesight remains blurry with bouts of clarity. Even though she won’t recognize it out of sheer frustration, it appears to me as though she is having more moments of almost being able to see than not, another good sign! Random misspelled texts lend proof to my theory! Her sense of humor is improving with each little victory and as of this very moment she is on a phone call with a BMT, GVHD survivor who like her had stage 4 GVHD, was in the hospital for a very lengthy stay and in the end he survived. He is a teacher who is currently back at work and living his life to the fullest. More to come on what transpired during that conversation. She is a fighter, and doing so the only way she knows how, with grit. Thank you all once again for the continued support and prayer.

Oh? One of those calls….

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Why must you ring? Why?

One of “those” calls, the phone call we all dread.

We all know the story, have heard it recounted a million times whether through a friend or family, on television or in the movies. This haunting recollection is always recounted like an old wives tale and for some strange reason it chills even more so simply through its timing. Midnight to 5am.

The phone rings, its 4am. Nothing good comes from a phone call at 4am. No one I know lives on the other side of this big round world just waiting to chat my night away, no one I know has been counting down the minutes to converse with me during what would be considered to any other normal human being, bedtime? No one. Not one, single, solitary person.

So that means when the phone rings at 4am it is without a doubt bad news, it always means at 4am that it is bad news. Right? Publishers Clearing house is not calling to inform me I just won 10 million dollars at 4am! Although they could, seriously PCH call anytime, PLEASE!!!!!

It rings, I don’t hear it. Sound asleep, weary from a long emotionally charged week my body is in deep REM sleep. Somewhere in my dream there is an apparition yelling at me to arise, screaming to wake up, something is not right! I wearily crack an eye to a very dark bedroom only to recognize the sound of a voicemail populating my electronic gadget of life.

Heart rate doubles instantly like an electric shock, as though the bell has just gone off at the fire station and I hear the words “Structure Fire”. Bam! I am awake! Searching fumbling for the phone, fear instantly grips me, thoughts, horrible thoughts of what may be; enter my brain! They keep coming as my fingers can’t quite grasp this stupid phone! Nothing is working! Squinting hard, no recognition is working and I can’t find my damn glasses to see since my fear induced jolt knocked them off the nightstand. Like Ralphy from a Christmas story I carefully search the floor praying I don’t take a misstep thus hearing the cracking of a shattering lens.

I have them! I can see, hitting voicemail a somber, I am guessing through dialect Asian gentlemen calmly explains Jacy has been moved to ICU. Her O2 saturation is poor, her breathing is labored, her red cells are down and she is in need of one on one care. If I have any questions to call.

Thank God! She is still ok!

I lay down for a moment to stare at the ceiling.

Once the emotions are out of my system, my heart rate has returned to normal and I’m done being scared, a thought crosses my mind. Why? Why does a late night call always bring the worst instantaneously from our subconscious? I know history, tales of woe and an assumed perception of the worst has everything to do with it. But I just wish there was a way I could shake that thought process from my mind. Anywhoo, this is how my week was to begin, with a single, heightened, middle of the early morning phone call.

After arriving to the hospital, doctors announce she had contracted a form of pneumonia giving her grief which explained why her breathing had been so labored. Her doctors said the GVHD was still responding well to the experimental drug Jakafi and their hopes remained positive as far as continuing to slowly wean her from all steroids which would help with her continued muscle deterioration. She has recently developed diabetes which is being treated accordingly and is also one piece of the picture in regards to her continued loss of vision. On Wednesday she participated in a bronchoscopy which did not make our girl happy at all, having a camera shoved down your throat when you have no strength to fight left her feeling a bit more helpless. By Thursday for some reason she had reverted completely and was back to feeling a failure in her recovery. She needed all our love and care to snap her back into her super woman fighting spirit!

I contracted some form of a cold and have not been able to see her which has been difficult to say the least. It is hard when the woman you love wants you with her more than anything and there is nothing you can do but stay on top of your medications and pray this stupid cold goes away quickly.

She wants to come home, it is all she thinks about! She wants to see her children, to hold them to watch them, to simply sit down and do homework, participate in their lives. On days she feels like quitting all it takes is reminding her what’s waiting for her at home and we can usually snap her out of a funk.

As of today Jacy is doing much better. This incident happened on Tuesday morning and although there have been a few bumps in the road for the most part she has held her own. The tests came back from the bronchoscopy and she has HVV6 a herpes virus we all carry to some extent, it masks itself in a few ways including pneumonia. Good news is she was already being treated with the appropriate medications so a minor adjustment and we shall see in a week. Jacy can no longer walk as her muscles have finally weakened. She still has limited use of her eyes which has been the hardest on her. She works very hard at staying mentally strong which after 67 days can be a bit daunting for a person who is used to doing everything for herself. Thanks to the help of her family she can sit in a chair for about 45 minutes without assistance, she is participating in physical therapy daily which includes the use of bands giving her muscles some resistance. She recently was placed on a special air mattress to help with her bed sores. She is seriously one tough cookie and my hero.

Our family thanks everyone who continues to pray, help, and care. She is the light of our lives, the toughest woman I know and she will come home. It just may be a while..

Hopefully I don’t get another one of “those” calls…

12:11 Sunday: Just in as I place the final touches on this latest edition!! HVV6 responding well, her lungs are clearing up! She is off oxygen and finally saturating in the high 90’s on her own. She has also been moved from liquids restrictions and will be able to consume fluids which means solid foods are not far behind!

Keep those prayers coming, she needs prayers of strength to help her mentally feel like she is improving, keeping her spirits high!