What do I say?

The woman I love lies in a room far away, alone. She says everything will be ok, she says she will win this fight, she says she has faith, she says…… She says she misses me.

I have often wondered; what is love? The movies would have you believe it’s a look, a moment, an encounter filled with music and rainbows, strangers meeting on a balcony with electricity shooting through their veins as they saunter off into storybook bliss. In reality love comes in all forms, at any moment. I believe love isn’t always apparent, it sneaks up on you when you least expect it or comes from a direction never envisioned. Sometimes love is seen through Gods eyes not yours. You learn this when asked to follow him, trust him like no other, no matter what anyone says, no matter who passes judgement because you know what you feel is love.

Love means seeing things through another’s eyes, not your own. Putting aside personal aspirations or needs to put someone else on a pedestal, even if just for a moment. Sometimes I don’t want to put anything aside or see through another’s eyes and I fight with my own selfishness, but love means knowing without a doubt that anger will never betray your feelings and forgiveness comes easy because you know love.

Love is having a sense of humor no matter the situation. Life is filled with funny moments experienced through both happiness and tragedy. Although there will be some who don’t envision any humor you portray, a moment remains funny none the less and it is love allowing temperance for another’s inability to embrace your vision of humor.

Love comes from holding someone’s hand. Happy, sad, or simply a comforting moment shared between two people for any number of reasons. Old, young, sick or healthy, to hold someone’s hand is a gift given that I think we take for granted. Human contact in it’s most basic form yields love.

Love means blindness. In a society that consumes hate like a Thanksgiving dinner and breeds intolerance for self centered glorification, to love regardless is a powerful statement. We are all born the same, with love in our hearts it is how we are raised that enables societies need. Love, true indomitable love conquers all roadblocks placed in our paths, thus destroying any hate others need to survive.

Jacy was brought to me through God, she taught me to believe in others again. I am sure I have said this before, but she took an broken angry man by the hand, against what all others wanted and showed me how to trust in myself and believe in love. She loves everyone and shows that love every day. She can be angry as a corned mountain lion while in the same breath forgiving as a priest. She challenges me and shows me how to be a better man every day.

I know what love is; it is my wife.

Our house is not the same. The sounds of children give it life, there is a warmth that comes from watching four of your offspring actually working together, laughing, and acting as though they enjoy each other’s company. Even with their mother absent, they are trying hard to keep some semblance of normalcy. They miss her greatly, but know I need their help so they have put aside many of their trivial arguments, moments of discontent and are working hard to keep this machine that is our life running smoothly. But even with all their efforts our house is not the same.

My bed is empty. I am the type of guy who would drive 36 hours straight, just to sleep next to my wife as opposed to alone in a hotel room somewhere. Pillows are stacked high, placed appropriately to simulate her missing silhouette. Where some may take this opportunity to stretch out, explore the generally off-limits other side of the bed I look at it as a sacred place. A place where only she sleeps, her heavy breathing absent, a constant rustle from restless leg syndrome under the covers, the glow from her ipad no longer lighting up the room at 1am, even her scent has begun to fade.

I cannot sleep.. The day keeps me busy enough. I have always believed to be a good husband you should do as much as you can as often as you can to assist your wife. I know it drives her crazy when she vents about something and I immediately try fixing the problem! It is just the way I am hardwired, I am a fixer by nature, it cannot be helped! There is nothing to fix here, I have only my problems, my harried schedule, my heartburn and stress and there is nothing I can do about it. So I just lay here looking at the ceiling; wondering if she is sad and feeling alone. I can’t sleep.

My heart aches for this time lost. I don’t understand why we are doing this? What on earth led us to this point? I just want her to be here at home! To be with us all the time! Her laughter, her smile, her goofy ass ways! I long for the moments when her goofiness drove me crazy!!! She is missing out on her children, her animals, her marriage and I want desperately to find someone to blame!! But who or what do I blame? There is no one, nothing, it is what it fucking is and that is bullshit! There is no getting back this time lost from her life, like a patient awakening from a coma to wonder what is, what was; my heart aches.

What do I say to people who ask how she is? The truth is too painful and to lie, well a lie is just a dishonorable thing to promote. I don’t mind keeping everyone abreast of Jacy’s condition, it does help others to better understand the severity of her situation along with the suffering of others traveling down this very same path. But what do I say to those whose hopes read far too much into my accounts. We all have hopes, but it’s hard to keep pacifying those with no intentions on hearing the truth. Do I keep telling it like it is or do I falsify my facts for a softer, gentler outcome during conversation? Some days it can become so intense a small bead of sweat rolls down my back and while looking for a legitimate out my eyes scan the room for the woman who would always save me in situations like this, but wait that woman is who we are talking about. She is not coming, she lays undisturbed in a hospital room 100 miles away. So what do I say..

Her kiss. When I married my wife it was her kiss which solidified our union. Your wife may have a nice kiss, but my wife, well… Today there is no kiss, tonight none as well, I long for her kiss, as it settles me when I am angry or tense. The only kiss I get now is through a mask, it is not the same and is always followed with how much she needs me. I need her too, yet it’s my heart that needs one of her kisses.

Some days I feel like I am failing.. Trying to be everything to everybody takes a toll. I have plenty of help and a routine that is working well. A community graciously at my beck and call, I am blessed. The kids are fine, the animals are doing well and the ranch is running fairly smooth, but I can’t help but feel like I am failing. My heart wants to be next to her every minute of every day. She is small and frail, no longer the strong woman who could run 24 miles then teach two spin classes in a day. She can no longer see and can barely walk to the bathroom which has left her with a fall protection device upon her bed. She longs for the ability to just stand up without running out of air, then needing to sit down just as fast as she stood. I am not there to help her, to make her walk, my schedule leaves me going every three days and it is not enough! I am her husband, her best friend, I promised to care for her in sickness and in health and yet I am not there! She should not have to cry alone, or act surprised when she sees me because it’s been to long between visits! My world is running so fast while her life is locked down, frozen, like the hour hand of a clock running in slow motion! I know this is what she wants, she tells me every few days is fine, she needs a happy routine for her children. There is no reason both of us should be absent and she is right! Sometimes I hate when she is right for I only want to be selfish and only think of her! Yet to see her sad and missing me, well, some days I feel like a failure.

So what do I say?……

Can someone please tell me what I am supposed to say? Can you? Place yourself in these shoes, stand tall because it is how you were raised to handle adversity, look into your children’s eyes daily, and hope you don’t give away too much while praying for an answer to come soon. I have become weary of sadness, tired of worry, tired of being scared, tired of being without my wife, my best friend and partner in crime. I have grown tired of being me. Wondering constantly while holding her as she worries about her life, her children, her home, her friends, the ones she loves, as she worries about my wellbeing  if she can remain strong enough. I know she can’t see me but I hold her and look into her eyes anyways because I know she can envision the look of love coming from my face ..

What do I say?………

The answer? There is nothing to say. I will keep moving forward, making life appear seamless for my family even though it is far from so. She needs to know all is well, that I am well, and her sole purpose in life is to heal then come home. She needs to know the fight is not me, the fight remains against her disease. My job as her husband, as the man who loves her more than she will ever know is to continue on, support her anyway I can while quietly, carefully caring for the life we have built together, forever.

What do I say?

I say, I love you….

I wrote this a few days ago. I have held onto to it, not wanting to post it, fueling a panic button that I may just be losing it a bit. In reality after reading it over and over again, it is the way I feel. It is the way I believe many would feel about their significant other in the same situation. Why? Because I do believe in love.

This morning  (August 19) Jacy can finally see a little better. The latest from the doctor in regards to the experimental drug is her body has accepted it and she is currently (his words) on a slight “uptick” from the median line of survival we are all hanging onto. This is great news! Although things can change for any reason at any time, the fighter that is my wife is coming through! This weekend they wean her off more of the steroids and up her drug a tad bit more.

So I kept it another couple of days. As of August 22, she had a little slide. The pain pump is back in place, she has severe edema so she is receiving Lasix again hoping to shed the fluid. A catheter has also been re-installed as her bladder refuses to quit bleeding. The plan remained the same as steroids continue to be weaned and the experimental program continues.

So please keep her in your prayers. I am fine, that is why I write. Writing allows me a freedom and ability to say what I feel, share it with others who may feel the same way, helping to cleanse my soul and recharge my emotions to handle the next moment, day or week.

Thank you for that….   Betty.