Tag: surviving spouse of a GvHD patient

Wake up, put both feet on the floor and take a step forward.

theycallmebetty5 Comments

The sun has risen, the sun has set, over and over and over again. For 4.543 billion years the sun has risen, the sun has set. Under its warmth or hidden in the shadows of the earths darkness lies the stories of roughly 105 billion people.

My story is no different from millions of others, I loved then lost, then loved and lost again. My heart aches as did the hearts of somany others. We all shared or carry the darkness that comes with such grief. I am not special, I am not different; I simply am.

So why can’t my brain accept this fate of mine? Why do I feel so much pain and anger inside? Why can I not understand this outcome, accept this outcome, and realize that no amount of anything is going to change this outcome; bringing her back?

Why do the people I love die? Why have they died for so many before me and continue to perish all around us or so it seems. We all know death is our fate, we as a society choose to look the other way, to ignore its significance when it comes to ourselves claiming it will never happen to me or standing by the adage of when it’s your time, it’s your time.

She (Jacy) always knew she would die young. She always knew.I hate that, because I don’t know what the hell to eat in the morning and cannot fathom knowing, I mean hand on the bible knowing that I was going to die young. It is unconscionable to me, so how does that affect your life, your meaning of life, your belief system?

Every day I do what I have always done for my whole life, I am not happy about it, some days go better than others, but during my childhood I was never good enough, at anything and was reminded of that fact regularly; yet I still do the same thing I taught myself early on, over and over again.

I get up, I put my feet on the floor, and I always take one step forward.

The pain will always be there, the loss is very real, I absolutely hate walking into my house, her house, the house we built together, for there is no warm echo of her voice, only cold walls and pictures to remind me of what was, and what never will be again.

But I move forward.

I believe you need to keep moving to lessen the impact. To understand what that person meant to you, not by staying home curled up in a ball but by trying your hardest to laugh, have a good time and remind yourself that you don’t know you’re going to die. That you don’t have even the slightest inkling what your last day on this planet may be. So keep moving, keep your head up and keep striving for that next big finish line, covering ground, climbing not sinking further into a hole of despair.

Again the pain is still there, oh it’s still there, and it hurts badly, so very bad, yet in the morning I put both feet on the floor, and took another step forward.

I said goodbye to Jacy’s car the other day. It took me two hours to clean it out. We purchased it new in 2007 to support the adoption of our daughter. We traveled all over in that car, as a family, singing 80’s rock, watching movies, laughing, so much laughing. It was a part of our family as silly as that may sound. But at 220,000 miles, a computer that was bleeding off power, one power door that no longer worked and another that only opened manually, a front transaxle that needed replacement and an owner who was no longer alive, unable to ever drive it again, I felt that maybe it had to go.

Cleaning it out, I discovered Jacy had surrounded herself with the most precious of commodities; pictures. She had pictures from all years ofevery one of her children hidden in easily accessible places.  They were everywhere and it made me cry. She loved them all, so very much to the very end. To the very bitter end….

But I cleaned it out, with tears in my eyes, a wet sleeve from drying my eyes and patience for what she left behind. When I left the car at the dealership I took one last picture. I don’t know why, it was just a car, it was Jacy’s car.

I put both feet on the floor, and took another step forward.

I felt guilty driving my new/used car. It is nice, it has 60,000 miles on it, I will be paying for it for five years, and it will start anew chapter in our lives for child transportation. But I can’t help but think how much she would have enjoyed the ride. How her ribs wouldn’t have hurt so badly going from the house to Stanford, or her dads. How I should have thrown caution into the wind and just hoped we could have paid for it so she wouldn’t have suffered so badly. I cried most of the way home carrying so much guilt asI didn’t feel I deserved such a nice ride. I gazed at the empty seat wishing she was there, singing badly at 80’s songs, butchering the words and laughing between tears of pain.

The next morning I put both feet on the floor and took another step forward.

We celebrated Christmas. We did this by going to mass on Christmas Eve. It was the first time I had been to our church since she died. It was one of her favorite places. We gathered and prayed, we sang and prayed and I prayed she was there with me. I kept my eyes closed so tightly and tried sovery hard to feel her presence, to hear her voice when we sang, I wanted so badly to know she was with us, to feel her hand slide gently into mine. But it didn’thappen. I couldn’t feel her. I tried so very hard, so very hard it hurt. I kept it together, we took a family picture by the tree. We as a family went todinner after then home. I didn’t go to bed until 2am. I couldn’t sleep becauseI was so upset that I couldn’t feel her there with me! I was sad, angry and devastated.

The next morning I put both feet on the floor and took another step forward.

We gathered in the morning. Cody made a splendid breakfast and gifts were exchanged. Very quickly we noticed mom’s absence. All the goofy gifts she would order online for each of us. Well thought out with some form of funny undertone. There was a giant hole in the morning festivities, and after allwas said and done I found myself alone for the afternoon cooking dinner for just us. It was lonely and sad and well, strange. I closed my eyes and prayed for her to talk to me, I waited, I tired and nothing happened. The house was cold inside and to me there was no warmth of Christmas. But I tried, the kids didn’t seem to notice and all of them had smiles on their faces. They all enjoyed agood Christmas dinner, there was hugs and laughter, but it just wasn’t the same.

The next morning I put both feet on the floor and took another step forward.

Jacy’s dad’s house was the place to be. It was warm, it was festivious and it was filled with love. Everyone was happy and had a good time.I see her everywhere there, and her step mom does too. It is not easy. I walked out to the cabin where Jacy stayed when she needed to be close to Stanford.Just a short 24 months ago she would have been laying there, happy to see me, smile on her face and love in her heart. 24 months, 730 days, 17,520 hours ago,she was here in this spot. 4 months, 122 days, 2,928 hours ago she was asleepon the very couch I sat on today. 2 months, 67 days, 1,608 hours ago she told me she loved me for the last time.

It’s hard to be happy, when you carry so much guilt for things you could have done better. It’s hard to be happy when the center ofyour universe is gone. It’s hard to be happy when you sit on the end of the bedat night hitting yourself in the head because you don’t know who YOU are or howto find out. It’s hard to be happy when the only person on this earth who loved you unconditionally, who you could tell everything to is no longer there to hear you, to hug you, to give you the love you so desperately need. It is sovery hard to find inspiration.

But you know what?

Tomorrow, I will get up in the morning, put my feet on the floor and take another step forward.

Not for Jacy or because it is what she would want me to do.But because this is who I am. It is who I have always been. I don’t have tolike it, I only need to learn from it, to show the way for my children, and tohopefully help just one person who doesn’t think anyone knows, or understands this pain.

My only goal in life is to aspire to inspire. It is all Ihave left, it can’t be changed by time, it cannot die and leave me, and longafter I am gone if I have affected the lives of just one person then it was all worth it.

I love you Jacy Franceschi. I miss you terribly….

I have become afraid.

theycallmebetty2 Comments

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

So here is my problem.

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

Let me rephrase or clarify the upper statement.

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

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

Yeah picture that! So fun.

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

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

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

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

But see it doesn’t get better either.

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

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

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

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

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

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

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

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

A Little Christmas message..

theycallmebetty8 Comments

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

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

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

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

Guess what?

I don’t want too.

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

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

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

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

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

I cried some more.

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

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

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

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

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

I will try. I promise.

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

Thanks, I love you…