Category: Families

When a mullet is more than a mullet.

theycallmebetty6 Comments

2

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…

I think I may have just gone crazy?

theycallmebetty25 Comments

im back 2

They say the struggle is half the battle. The lord will present you with nothing you cannot handle. Anything worth having is worth fighting for. It is better to try and fail than to have never tried at all. To live a life without challenges is to have never lived. (Yes I was paraphrasing)

Personally I have always felt; to remain positive, even when not showing it outwardly is to shine light upon your darkest of moments. When I am down I always remember that and it helps me to realign my thought process. I am not sure who said it, if it’s a combination of a few philosophies or one day I just made it up. But it is my go too.

Today Monday 19th 2015. I am officially tired of everything. Nothing, not even my go too is working. I am sure this is a passing feeling as I have never been one to wallow in my own despair. But today I just can’t seem to get a grasp on things.

I am going to complain, something I hate, but please allow me this moment. I need to get it out, I always do better writing than talking so if you’ll forgive me this (deep breath) here goes.

I didn’t sleep last night-AGAIN! My head hurt so bad I wanted to scream and whenever I did fall asleep it was filled with horrible nightmares centered on my family and wife. My brain won’t shut off! It is going a hundred miles an hour, all the time! I lay there constantly wondering if I am doing a good enough job or if I am failing my children? If so how do I inspire them, motivate them, move them without becoming frustrated! Last night after a long weekend with two of my kids turning into complete shits, I lost it with one of them. I was two steps away from becoming my father which is a condition I fight with daily. I don’t want that for them, it just shows them the easy way out is to yell, become intimidating and that is not how I wish to raise them. I needed to walk away into the darkness of our ranch and in the same fashion as how I work a horse, ponder just what I AM DOING WRONG first before pointing the finger completely in their direction.

My life has been centered on this family and my job for 19 years. What many people don’t realize is when you are accepted into the fire service, the fire service becomes your family as well. So I carry a huge amount of guilt for being gone from work as long as I have as though I have let them down as well. Some mornings I will stop by after dropping off kids just to sit and have a cup of coffee with the crew. It is not that I have nothing to do, just the opposite it puts me hours behind an already crazy ass schedule, but it allows me one whole minute of normalcy with my other family. Even if nothing is said at all. I am very grateful for the time off allowed thanks to my second family, but I do miss them.

What am I going to do if Jacy can never work again? I know that sounds selfish as hell but hear me out! Since we moved here I have worked very hard to build this place, to not owe anyone anything, putting every spare penny into new barns, doing the work myself, not taking a single loan but waiting patiently and in some cases building things with scraps and spares from other peoples lost projects. It is why we both drive 200,000 mile paid for cars, have a 15 year old horse trailer, still live with broken flooring in the house, a 30 year old kitchen and a hole in the ceiling. We have always lived on a thin line, trying to provide our children with a life most never dream of living. The life she always wanted for her children, the life I lived to some extent as a child. We knew it was going to be a struggle but took the challenge head on and a challenge it has been. Pay cuts, overtime loss, and raising costs of living, the very same struggles many of you face on daily basis! We are not special or any different than anyone else! Since Leukemia has taken over our lives my whole process has been reorganizing, selling things we don’t need, working for any extras needed around the ranch and slimming us down to a livable amount. I have put away every spare penny possible to cover her being out for an extended period of time. But what if? Do I have what it takes to keep reinventing ourselves? I always feel like I am never going to measure up. As though I am missing that one thing that others have to make themselves successful financially. We are making it without her income, but what if? I just can’t seem to shake the “what if’s” no matter how hard I try!!!! Is that normal? Am I just overreacting, should I just trust it will all be ok, and if so I just wish God would show me the way! Maybe he already has and I just can’t see it through a clouded mind that won’t shut off! I swear it’s as though my brains on crack! I really don’t care if my wife ever works again, I just want her to come home! To have a home to come home too! I just want to take care of her and see her with her children! To see her laughing and smiling surrounded by the animals she loves! I don’t care about me, my point was, hell I don’t even know what my point was anymore. Now that I have written it all out it seems arrogant, selfish and pitiful.

Speaking of her coming home. That proposed moment just keeps getting farther away! Every time she gets a possible date something else happens! I don’t know how she does it! She keeps a smile on her face and says; well what ya gonna do? She is right of course and we usually have a good laugh, but my nerves are raw. I am scared for everything she is going through, scared every time I walk through the doors, scared at every turn there is going to be more bad news, scared our lives without her for long periods of time will continue to be the norm, scared she will one day not smile anymore and feel as though there is nothing more she can do. Listen the prognosis is still good. There will be an outpatient date for her, but the hill just feels as though it is getting larger and harder to climb when it comes to her having any resemblance of a normal life. I know the retort is instantly; well at least she will have a life! But this is my one moment of bitching so let me have it! I want her home, I want her to never have to worry about her health ever again! I just desperately miss our life!

God! I just re-read this and it sounds self-centered and contrite all in one! Shit am I going crazy?

Today Jacy is going into the O.R. for a procedure to hopefully find and resolve her bleeding bladder issue. I am praying for the simplest of outcomes. The other options for controlling this issue are not what we want for our girl. Please pray for her today, that she gets the right answers, that everything goes smoothly, that she keeps a smile on her face and soon we hear she is smiling all the way home.

Thank you all for letting me vent. Tell me I am crazy, tell me I am ok, just tell me something for today I awoke feeling as though I was going to explode! I erased nothing in this rant, changed nothing even though I hate most of what I wrote, but I needed to write it and since I am unable to speak about it out loud, you have all just become my councilors. I am sorry for that, but good job on obtaining your degree.

The wedding crasher…

theycallmebetty8 Comments

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

Have we turned a corner?

theycallmebetty11 Comments

Unknown-11

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….

calvin_and_hobbes_wagon

When a shower isnt a shower….

theycallmebetty6 Comments

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.

And away they go!

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I have spent the better part of the evening reading each and every emotionally charged snippet about children heading off to college. I went back and re-read what I wrote about Cody leaving last year on my blog and found myself choked up all over again.
To every one of you feeling the pain of having to say goodbye tomorrow or the next day or next week understand this; yes it hurts, it is going to hurt, there is no way around the pain of watching your child walk out the door alone. Yes it is a good thing, you have done your job it is time for them to shine! No you don’t have to be happy about it, no matter what anyone says to you, this is your child, your emotions, let those emotions flow freely, you have earned it!  Yes you are going to miss them terribly along with their dirty laundry, snarky comments, goof ball friends and most importantly you are going to miss just sitting with them sometimes not saying anything at all. It is hard not knowing what they are doing or how they are feeling along with  constantly wondering if they are safe,  after all that has been part of your existence for the last 18 years! But in the back of your mind you know you have done your job, so trust me it will be ok. These children or now young adults no matter how we may perceive them are the very best part of us heading out to make their marks upon this world and that is a good thing. They will come home and they will leave again, but know this, each time they come home they will be a little different, a little wiser, a little more educated, and a little more like the adult you always hoped and dreamed they would become. So while you are grabbing for tissue to sop up the misery, take your free hand and pat yourself on the back for the best my friends is yet to come! I promise!

Feel the warmth

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sun

Today the sun shone upon her face as I witnessed how its warmth made her feel. We take for granted our daily lives and how simple everyday processes are there, waiting for us, unobtrusive. Like knowing your right leg will follow your left, or when you itch, a dominant hand will scratch without so much as a second thought. So goes our lives, the sun will rise, the sun will set, followed by the moon. Yet we never think about what if we no longer knew the sun was there?

Every day for millions that fire in the sky is too damn hot! Every day for millions it shines over and through clouds leaving them to damn cold. We take it all for granted. One thing I have noticed since this journey began is how much I miss living near the coast. The valley is a wonderful place, but driving back and forth to Palo-Alto I can see the majesty that is fog rolling in over the foothills, that cool breeze proceed its arrival letting you know the fog is almost there, never having to hear the steady drone of an air conditioning unit running for 24 hours on occasion. I grew up in a charming little town, filled with dairy’s and cattle ranches several miles inland from a tip of the bay. Sonoma was an awesome place to grow up. Every night you could watch the fog roll in over the valley walls, rolling out in the morning to leave a cool, crisp moistness for all to enjoy. As humans we complained it was too cold, or too hot during the day and man just once I wish that fog would wait until later to roll in making everything wet!

I have been away too long, I am not sure if it’s my age, the fact I recognize we complain way to much or seeing life through my wife’s eyes as of late has changed my perspective? But I appreciate everything this earth has to offer us as human beings.

So I rambled, where was I? Oh yes, What if?

Watching my wife slowly step ever so carefully down a long and busy hallway, eyes fixated on a double set of doors roughly 50 yards away. The light shining through those doors indicating they are in fact a righteous pathway towards freedom. My focus is solely on making it there without her feeling so tired she can longer fathom making an extra step, thusly cutting our journey short. Ensuring her pathway is clear as we traverse this major artery of the complex. My worries are there, but I am trying my best to not let them show. She has only completed a few loops around the quad over the last week or so; her small world of circular entrapment. Today’s journey for her has become the equivalent of walking into the next town.

Double gowned, IV stand in tow running on battery power, a hat to protect her new skin from the dreaded UV rays and of course sporting the ever so stylish Darth Vader mask, keeping any air she breaths clean of all harmful organisms. We crawl, people staring, some smiling, others with a “good job” look upon their faces and of course the trip wouldn’t be complete without those who just don’t know what to do when they see her walking towards them. To look away, make eye contact and freeze, stare mortified or the just plain look of pity. Oh well it really isn’t their fault so what can you do?

We make it to the door and as I open it, the sweetest, most perfectly timed light, warm breeze hits our faces. For me it feels great! But for her, well this is where I was going with all this rambling from the beginning, it is heaven. This woman who hasn’t felt a breeze, natural warm air, cold air, fog, or glaring heat for 44 days is slightly blinded by the brightness and in one deep breath, relaxed and happy.

I witnessed how the warmth made her feel! We didn’t make it to Stanford’s glorious, well-manicured fountain area another 25 yards away, but we did find a nice bench, under a tree and there we sat, beneath a beautiful mixture of sun, clouds with a hint of fog just off the horizon. We listened to the fountain, and all the wonderful ambient background noise. Light and movement were a neural overload for my wife but she enjoyed every minute! We talked as if we were on a date; that is if the date was near a hospital and my date was heavily sedated. (No rufie jokes please) She sat with her eyes closed for a bit, feeling the suns warmth, the light breeze, free from the beeping machines in her room, while quietly wondering when she was going home.fountain

We had a wheel chair available for the trip back, but she refused, her stubborn Cuban side firing back up! So after twenty minutes or so, Jacy said it was time and we slowly, carefully made our way back down that long busy hallway, into the BMT unit and back to her little room with a window.

Once inside the BMT unit it was heartwarming as almost every nurse cheered her onward, congratulating her for making the journey, inspiring her to be stronger, to become healthier in her recovery. I cannot say enough about these special people who work inside this wing of the hospital. We all know and I have said it before; my wife could make friends with the hardest of people. Yet everywhere we went, even in the hallway outside the BMT wing, nurses or Stanford employees were coming by to wish her well. They all know my wife by name, they all have a smile on their face and they show just how much they care. It is inspirational.

Tomorrow is a new day, no matter what has happened today, good, bad, or in-between remember this, there is always someone out there doing a little worse than you. Be their inspiration.

The sun still shines on your face, you still have the freedom to be where you want to be and when you want to be there, you have the ability to make the very most out of your day, every day.

So please take a moment and be thankful you can still feel the warmth.

hobbes

Gonna pump you up!

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hanz and franz

We are going to PUMP YOU UP!!!

Fighting Leukemia is a long hard battle not for the faint of heart. These men and women struggle with more pain, both mental and physical than anyone could imagine. Their continued inner conflict seem to come from the heart because no person wants to go through something like this! Once you read all the information you then have questions, doubts and wonder why exactly someone would put themselves through endless hours of physical and mental highs and lows. But they selflessly do.

Believe me, these patients don’t do it for themselves! I have listened to a few survivors now, both in conversation and as part of this wonderful network slowly being formed through contact both on this page and other media sources. Each of them all believe saying yes to life was the right thing to do, the responsible thing to do; having treatment was a choice and they all believe they’ve made the right choice. But??

Of the four I am currently chatting with online, each one slips into a sentence these words: I am not sure I will do it again. Or the ONLY reason I went through it all was for my family.

Think about that for a moment. I have been faced with serious choices over the last 20 years in regards to others, and I always tried my hardest to make a decision based on training and what I would want someone to do for my loved one. Never in my wildest dreams did I ever think; what if it was me? What if I needed treatment and without that treatment I may perish?

These loving, kind, vibrant individuals faced with an option, treatment with a 50/50 chance or no treatment and let nature take its course eventually leaving behind loving family and friends. It boggles my mind.

I am overwhelming thankful for the choice my wife made. She was rocky for a minute, but it was only a minute and then her normal, lets kick this things ass mentality shifted into overdrive. I am grateful the people I have met who have survived not just Leukemia but all forms of cancer made that choice letting modern medicine have a shot! I am thankful for where we are in the advancement of treatments for all kinds of cancers, because 20 years ago the outcome would have been very different.

These people are my heroes, I am honored to know them, to talk with them and hear the love, kindness and respect they hold for a new found life. Some are completely different than before, nothing bothers them, and they no longer get upset over the little stuff, waiting for each and every day to greet them with the sunrise. Others hold a new respect for their surroundings, knowing if they hadn’t made that choice how much different things would be today. All of them are grateful for their families, loved ones and friends.

Each one of them is open and honest about their struggles, willing to share feelings both positive and negative, hoping I see in the end it will all be ok. Writing about Leukemia as it decimates a loved one is filled with negatives, it just cannot be helped. But there are positives and these people prove that to be so!

To each and every person battling to live, for your family, your friends, your loved ones, I love you all, I will always share your stories of inspiration to hopefully help another father, husband, friend such as myself. You all make me proud to be who I am, what I am and where I am right now with this life.

With that, I believe it is time we update the wife’s condition.

Wednesday, things were very rough! Jacy still couldn’t walk, pain everywhere throughout her lower extremities. The fevers had returned with vengeance, and vomiting appeared to be an every 30 minute abdominal workout. The doctors pulled her Hickman line for fear of infection and placed a Picc line in its place. She was still heavy on fluids, and any effort to urinate (which was a must every 10-15 minutes) was met with burning pain and small abdominal spasms. When I left her on Wednesday night because I was headed home due to a large fire near our jurisdiction, she was knocked out from pain meds.

Friday I snuck over in the afternoon and Jacy had been moved into the cardiac unit. Fevers were running high without rescinding, she was still vomiting a lot, and her lungs weren’t exchanging oxygen well so O2 saturation levels were very low. She was also diagnosed with HHV6-B

HHV-6B primary infection is the cause of the common childhood illness exanthema subitum (also known as roseola infantum or sixth disease). Additionally, HHV-6B reactivation is common in transplant recipients, which can cause several clinical manifestations such as encephalitis, bone marrow suppression and pneumonitis.[5]

Sooooo cloth gowns, masks and gloves for everyone!!! SCARYYYYYYYY!!!!!

I know you are asking yourselves; hey! Didn’t the title say “we are going to pump you up”? This has all been kind of a downer!

Well MY PEEPS! Word on the street is Jacy was slipped a little steroid cocktail and BAM! Instantly feeling better! That’s right within a day her fevers had subsided and by the end of the next day she could walk the quad without pain!!!! Whoop whoop!

roids

Jacy was moved from the cardiac unit yesterday and once again is blessed to have her very own room. (A luxury I might add). The doctors ran a bunch of tests today which included a colonoscopy and she still has plenty of sores in her throat along with a full body rash. Doctors have stated they are trying their hardest to get everything under control so she may be released to outpatient care hopefully by the weekend!! Way to go Steroids!!!!

Getting her out of there and into the redwood lined, mountainous retreat that is her father’s place will be a spirit builder for certain.

So after a very long storm the first bit of sunlight comes cracking through the clouds and hopefully we will feel the warmth of her smile once again.

When angels cry

theycallmebetty7 Comments

 

angel 2

Today I felt a sound;  piercing silence with destitute angst, grasping upon fibers of resolution with no sustenance for carrying such weight. Fear, exhaustion, sadness, weariness, exasperation; the last few exhales of a frail and emotionally barren patient who feels as though one more night without resolution may become one night too many.

I felt it! I didn’t hear this sound, although my hearing is just fine as human beings we carefully and most often selectively choose what we hear and when. Yet every now and again it is more.

While on the beach we hear waves yet I feel deep in my chest their mighty power swell, withdraw and swell again crashing onto the pummeled earth we know as sand.

Riding my horse, any horse; I can hear the animal breathing hard leading me to know she is working, but what I feel is so much more. Tightening, relaxing, stride reaching or falling short, flex, give, kindness, frustration and freedom. I carefully feel deep inside what I hear leaving me satisfied or yearning for more.

My child hugs me and says I love you daddy, but what I feel inside is warmth, love, caring need, want, respect and knowledge that this being was not only the very best decision made in my life but, I will always love them exactly the same way long after I am gone.

So when my wife calls me this morning quietly whimpering, leaving me struggling to understand what she is trying to say. I feel that.  Through calm patience allowing her to gather enough breath only to break apart, crumbling into tears because its been a long night with no sleep, excruciating pain, another fever, and a new inability to adequately exchange oxygen within her lungs. I let her cry.

I don’t hear her cry, I feel it.

Phrases like: I am done, this is all I can take, I just want to go home, spew forward with no resolution.  I can’t take the pain any longer, I feel broken, I’m never getting outta here, I am scared, so very scared!  All spew unabated from her raspy, quivering vocal chords.

I feel it deeper.

My throat is tight, yet I can’t let her know, my stomach hurts so quietly away from the receiver I take calculated precise breaths to not let her know my heart is breaking.

Because I no longer hear her words but feel her pain.

Today they are doing a procedure to extract a portion of her lung for testing.  She does not have adequate oxygen flowing through her system and they are concerned as to why.  Her white cells are there, they are multiplying, they are accepting their new home. She has a fever that will not go away, vomiting has not ceased, fluid retention stays the same and with each and everyday she feels her road to normalcy slipping away.

Two days ago she felt good, we all  felt positive, but for some reason two steps forward continue to multiply into three steps back. Like climbing a mud slicked hillside or traversing through a severe rain storm. This journey was never promised to be easy, it was explained to us in very plain English it may be a rough road.  Since we have been at Stanford I have personally witnessed people walk out, ready for the next phase.

I know there is hope, I feel it without so much as a word spoken.

Yet it is not me suffering through each day, I am not staring at the same four walls, no big blue curtain surrounds me or leaves minimal privacy as my body aches to urinate every five minutes. My life is not surrounded by nurses or inundated with endless needle sticks, buzzing, chirping squealing machines. At no time do I feel like screaming from boredom just to hear something other than the television.  When I arise in the morning my legs work, I stand just fine, without assistance. There is no button to push asking for help or more IV pain meds, no pills to swallow every four hours, no reciting my name, birthday and address for security purposes every time a medication is given. I don’t need strangers helping me to shower, cleaning up after me or wiping my backside when things go sideways.  Every morning a group of attending’s with their mentor does not surround my half-naked body staring and talking as though I am not there unless a learning moment needs explanation. Oh they are nice enough, friendly smiles and all yet it is not in my wheel house.

All of this happens everyday for my wife, my feelings are positive, I know it is all going to turn out ok, I feel it.

I hear her desperation, I hear her cries for help, I hear her pains, wants and wishes.

But when my wife calls saying she’s done; I cannot hear that, I can only close my eyes and feel an angels pain.

Life? Leukemia? You just dont have it all figured out…

theycallmebetty6 Comments

stay positiive

Life has a funny way of throwing things into your face. You may think you know what’s going on when in reality you are just as clueless as the moment you awoke this morning, groggy eyed, wondering if everything flailing inside your brain was a dream or a continued reality you just cannot grasp.

Last week I dreaded going camping, it felt as though I was trespassing on the sacred vows of marriage. The thought of leaving my wife behind at Stanford where she has been for three weeks to camp with friends, drink beer, fish and play a variety of water sports with our children; well It just didn’t seem right.

Unbeknownst to me early on the morning of our departure my wife after having a particularly hard night filled with rigors, 104 temp, vomiting, and excessive fluid buildup leading to a case of difficulty breathing had in fact only one thing on her mind. It had nothing to do with what was happening to her, on the contrary it had everything to do with me. That morning as we loaded up to leave, lump in my throat, with nervousness screaming aloud in an already crowded room known as my subconscious, my wife asked her doctor if she was going to die.

Jacy didn’t want to know if she was going to die for her own welfare, although she was terrified with so much pain and discomfort. No my wife asked by simply stating; I just told my husband to go camping with our children, to go meet friends and have a good time. He doesn’t want to, he feels the need to be here, with me. Doc am I going to die? Should he go? Her answer; I cannot tell you whether or not you are going to die, but what I can tell you is even though this is hard right now, you have all the positive signs of making it through; we can manage your symptoms you just need to stay focused. If I were to tell you anything it would be to let your husband know it’s ok to take your children camping. We are here and you are receiving the very best care. And with that my wife never said a word.

The weekend was perfect, every child did exactly what they wanted to do, be it tubing, wake boarding, or just plain old fishing with dad it was a sunny break after a long bleak storm. Every moment, around every corner of the campground I looked for my wife, I knew she wasn’t there, but it’s what occupied my mind. I answered all the curious questions and felt at home as we were surrounded by some of the most caring wonderful families. It was definitely a delight.

Saturday night I was feeling my emotions associated with this weekend were all figured out. You know as in; this was Jacys way of allowing me the ability to tell myself it was ok to have fun without her, to not worry or feel stressed if even for a short period of time. That my mind and body needed to quit worrying for a minute and just regroup so upon returning my abilities to remain strong for her and the kids would be renewed!

Then I met a Gary (name changed for privacy)

Standing by the band (yes this camping trip had a band, and they were good, really good), beer in hand, feeling pretty confident with my all-knowing sense of entitlement, Gary walked up and introduced himself.

You see Gary has a wife, Gary’s wife is a two time Leukemia survivor which included two Bone Marrow Transplants. Now I had a few, so I am not positive, but my recollection was the first round was actual bone marrow and her second round stem cells exactly like my wife. In great detail Gary discussed each and every day, the highs and the lower than lows. Side effects, sicknesses, water weight, seizures, the BMT wing at Stanford, we talked about it all like warriors likened to each other through battle. He talked with sincerity about a wife who was ten years free and clear when she didn’t feel right and she knew. About whether or not to go through with another BMT. About making the right decisions and struggling together through it all. Gary was a kind gentle man who spoke from the heart.

After we finished talking my head was swimming, how they mirrored many of the same issues my wife currently faced, how he struggled the way I am struggling now and reassured me with patience it would be ok. I left a little early, went and laid down, overwhelmed by it all.

The next day we hung around camp, fished off the dock and hung out with our friends. The boys/girls went tubing while Parker and I fished. In the middle of the day Gary was standing near me when a nice lady walked up to which Gary stated with a smile; there he is, you wanted to meet him? She looked confused for a second, then putting it all together stuck her hand out to shake mine and introduced herself as Sara (Name also changed for privacy), Gary’s wife.

Sara and I had a very nice talk about Bone Marrow Transplants and it was during this moment that a realization struck me right over the head. We weren’t only supposed to be here for the relaxation it afforded our children, the ability to unwind some of our stresses or allow my wife to feel as though she wasn’t impeding our children from enjoying their summer.

No, once again life had shown me how arrogant it was for me to think for a second that I had it all figured out.

You see God always has other plans.

We were there so I could meet this couple, hear their story and understand that it would be alright. It was going to be hard, there was no doubt to that fact. But in the end, it was going to be alright. We would survive this, she will survive this disease, this transplant. There would be plenty of dark days on the road to success, but to fully understand success comes at a price and through hard work, a life able to be lived was just over the horizon. This man’s wife was here, she survived twice to be with her husband and their children and now she was here helping me to survive as well.

When we left on Sunday, we all hugged and said our goodbyes, I didn’t get the chance to say goodbye to Gary and Sara, but they have been constantly in my thoughts ever since.

Don’t ever think you have life figured out for you would be wrong, God knows, and if you listen closely you just might hear what he has to say.

UPDATE: I wrote this Sunday night and something told me to wait. So I listened to that inner voice.

Monday was a hard day for me as I watched my wife suffering through almost thirty pounds of water gain, her face and lips swollen, her inability to speak because of lesions in her throat, almost in tears due to excruciating pain in her legs and knees with an inability to stand for more than a second without collapsing. There is or was nothing I could do, but hold her hand. She slept on and off, would hallucinate in the middle of a conversation with me, and constantly thrashed around uncomfortably with what looked to be an Alaskan pipeline of IV tubes going into her or drains coming out of her. But through it all she would smile, tell me she was happy I was there, and we would hold hands before she fell asleep again.

IMG_3050

Tuesday-Today; another long hard night with a myriad of problems, at one point she sounded destitute, unable to handle her state of being. A few hours later she called and said she was feeling better, we talked for a while about my meeting this couple and she agreed it was all in God’s hands. A few hours later she called again and could speak fairly clearly. She said; the day was just looking a little better and we talked about the kids. Then this evening she called one more time. Her blood results came back and white cells are forming! She is engrafting! It is the first major step towards recovery! The nurses were also referring to her having the ability to become outpatient within a week or two!!! It was all too much for me to comprehend when she told me and I am afraid I may not have come across as excited enough, but all I can say is thank you God, thank you everyone, keep the prayers coming she will need them to get through this next week and we will all pray her new immune system likes its new home and continues work hard for our girl.

All things happen for a reason, I am fairly certain my attitude would have continued in despair if not for a chance meeting during a camping trip that I was certain I wasn’t supposed to be on.

charlie brown