That Girl

I often wonder what Jon would be saying if he could see me.  I like to think he can see me and that he's with me. I'm just not really sure how it all works.  Sometimes it makes me sad when I look around and realize just how different things are... just how much my life and everything about it has changed. Simply put, how much I've changed.  Sometimes it feels like I'm watching myself.  There are moments when I feel like if I were still the person I was a year or two ago, I might be acting very differently.  Typed words come easily, but actually talking and opening up seems so difficult.  And if you know me at all, you know that I'm a very open person.  I guess since losing Jon, it feels like a difficult task to open up my heart, to say words aloud.  When I do, I'm often overwhelmed by how many emotions flow.  Maybe it's easier to just stay closed up a bit.  I feel like I have trust issues... I don't really see why.  I mean, Jon himself never betrayed my trust.  If anything, he exceeded any expectations I ever had about relationships.  But I can't help but feel a little betrayed.  By life. By the way things turned out.  Maybe on some level, even by Jon.  He promised he would never leave me.  I know that promise was forced out of him after much pressure, and it was made with both of us knowing it was un-promisable, but it still feels like betrayal nonetheless. It is unbelievably hard for me to let people in who were not around before... people who don't know that part of my life... that part of me.  I feel like what I've been through has shaped me so much as a person.  So profoundly in fact, that I don't think anyone can understand who I am without knowing who I was.  

I do feel Jon around me, just not in the ways people might expect.  As much as I could never have been prepared for losing Jon, he did make some fundamental truths known to me before he died.  He made it absolutely clear that I was loved, that he was proud of me, grateful for me, and that above ALL else, he wanted me to be happy.  I feel lucky to know such basic yet significant things, without a shadow of a doubt.  How many people can say that? All of the emotions I feel on a daily basis, all the sadness, the questions, the anger -- I NEVER doubt how Jon felt about me and what he'd want for me in this life.  In fact, sometimes I can almost hear his voice in my head.  We were so connected, I like to think I know what his reaction would be to most things.  And although he is gone, I still feel so protective of him. When something happens that I KNOW would piss him off, I have to stop myself from fighting in his place.

Mostly I feel him around me when I'm happy.  I can't shake the feeling that if he is watching me, he is most happy when I am really laughing -- the kind of laugh that makes your stomach hurt.  There is a moment mid-laugh when I can almost feel his eyes on me, and see his face with a huge smile -- smiling because I'm smiling.  When someone is being sweet to me, or a good friend, I can feel Jon's satisfaction.  He would want me to be all of the things I was with him -- happy, loved, protected.

Watching Almost 6'6" perform is another instance when I can literally feel Jon's smile... the pride he would feel in watching them keep doing their thing.  There is nothing he would want more.  And I can't help but feel that he loves having his two favorite things -- music and love -- intertwined.

I don't always feel positive.  The anger sets in when I think about all that Jon COULD have done if given the chance.  It makes me sad that he won't write anymore songs, that he won't get to perform again.  I KNOW he should be up on that stage.  He SHOULD be next to me right now.  Those things will never change. Knowing and feeling so many positive things, as I do, still doesn't make it suck any less, or make it any more fair.  Knowing how much he loved me doesn't make it any easier that he won't get to be around to love me any longer... at least not in the way he wanted to.

But I look at all the amazing gifts he gave me.  Some of them people, most are virtues, and a knowledge of true love.

I'm not sure if "normal" exists anymore -- or if it ever will again.  I think it's just a new kind of normal.  A new reality.  And I am grateful for so many little things -- for true friendships & belly laughs.  I am thankful for those moments when I can feel Jon smiling at me -- those are the moments I know I am beginning to live again, and being the girl he fell in love with.  I always want to be that girl.

I can hear his voice saying "Get out of your head, Lace." Stop over thinking & just live.  Cherish every moment. Laugh loudly. Hug tightly. Cry when you need to. Love big. And every other cliche that exists. ;)

I never understood how I got so lucky to have someone like Jon pick me.  So I will live my life trying to measure up to the image he had of me.  If he thought I was that special, there must be some truth to it.  I like to think so. <3

Packing Up Memories

I'm excited about moving. I know it's the right decision for me -- it felt right when I walked into my soon-to-be new place. I know I can only move so far forward in my life if I stay in the same place. But that's also what makes it so hard. This apartment is the last thing that's remained pretty much exactly the same since I lost Jon. It's the last part of our life together that I can actually hold onto. I look around my life and EVERYTHING is SO different... in more ways than I can ever explain. But I come back here and I can almost pretend my world hasn't been turned upside down.

I know Jon would want me to get out of here. He loved this place so much. It was our special, most favorite place. It represented us starting a life together. It represented the first step in the life we could have together. But it was about the two of us, and I know the last thing he'd want is for me to be sitting here, by myself, looking around at pictures, feeling sad about what used to be. Besides, he knows I will never forget Snuggle City. He knows no matter where I am, I carry him with me. It's just a fact.

The apartment I'm moving to is in the exact area where I originally wanted to move when Jon and I first decided on the city. It's also apartment 4D -- which is the same as our beloved first apartment. It may sound silly, but it feels like a sign. Or at least reassurance. And honestly, that's all I need right now. I'm a smart girl. I know when I'm making the right choice. I know I need a "fresh start", but that doesn't mean I don't hate when people say that. I think I've had a tremendous amount of clarity throughout this entire ordeal, but that doesn't make it hurt any less. Jon always knew what I needed. I can't help but think he still does.

So tomorrow I officially sign my new lease and the packing begins! Bittersweet to say the least. This girl I've become -- the one forever changed by loving, being loved by, and losing Jon -- will just take have to take it one step at a time. Ok, a lot of steps -- up a 4th floor walkup -- but one step at a time, nonetheless. ;)

"The more you love a memory, the stronger it is."

Katie

On my quest to write about what's important to me, I can't help but think of Jon's sister, Katie. My moods change from day to day, hour to hour, and it doesn't always work, but I often think about how lucky I've been. To have had Jon in my life... our love story, our friendship, and all the amazing things he taught me along the way. He taught me how to laugh harder than I ever did before. He taught me the importance of honesty, friendship, courage, humor...music...words. I could go on forever. But in addition to all of these things, he gave me something I never had before -- a sister. Or as Katie and I say, seester.

When I first met Jon and we were emailing back and forth, talking about nothing and everything, I remember being intimidated when he told me he had a sister. I knew for a fact that if she didn't like me, it would NEVER work out between us. Thinking about it now, it makes me laugh.

Jon always said that Katie was the one person who didn't treat him differently after he got sick. He was so grateful to her for that. This excerpt is from the email he sent me:

"I am really close with my sister, though, she's one of my best friends. You probably would never guess it without me telling you, but she's about 4'10". It's pretty funny when we stand next to each other for pictures. She's not really into sports but she started taking ballet when she was like 5 and did it all through high school... and she loves shopping, obviously. Do stereotypical girl things include chick flicks? Because, having a younger sister, I've pretty much seen them all. I swear she made me watch them. I don't like them at all. Haha."

The first time I met Katie, we hit it off because we realized we both loved pickles, and the same toppings on our burgers. So simple. It was clear why Jon loved her so much. Besides being fun and feisty, she would do anything for the people she loved. As time went on, we became real friends. I could even rant to her about whatever dumb boy thing Jon was doing at the time. She never judged, just listened.

I can't imagine a life without Katie in it. She has saved me in more ways than one over the course of the last two months. She and I stuck together during the funeral, burst into tears at the same moments (or one of us started it and the other would follow). We laughed together, told funny stories, broke down together... I've calmed her down, and she's done the same for me. Despite how young she is, she knows how to handle my hurting heart with so much grace. I know that part of the reason she cares about me is because of how much Jon loved me, and I him. But I also know she sees hope for me... a future...happiness even. I could not ask for a better friend, or seester. And whatever happens in my life, wherever either of us ends up, I know that I truly have a sister I can count on. And that's a gift. Just another thing Jonathan gave me.

Love you, Katie.

Thank you, Nurse.

Two months ago, I started a pile of condolence cards, mass offerings, prayer cards, and donations made in Jon's name that I received when he died. I planned on writing individual thank you notes to everyone who offered their sympathy, but as I glance over at the table, that pile has only seemed to have grown. The general thank you's are simple enough -- some of the people who sent cards or made donations are people I never even met. But I desperately want to thank so many individual people... people who helped Jon and I along the way, people who enriched Jon's life while he was alive, people who held my hand and literally saved me after he died. People who's messages brought me comfort, or even made me smile. Someday, I will address each of these people individually. For now, I thought I'd offer up a select few for the world to see. Some of these people deserve so much more gratitude than can be expressed in words. But words are all I have to give right now.

As a pediatric oncology nurse, I've had many people tell me how 'special' I must be to work in this field. I've had parents of patients invite me into their lives during some of their darkest moments, and some of their happiest. I've had them tell me that the nurses and caregivers became family to them. I never truly understood until my life came full circle. Being with Jonathan through all stages of treatment, and caring for him at the end, I gained a completely different perspective of these caregivers who joined us on our roller coaster ride.

Please know that I am thankful for EVERY person who took care of Jonathan in some way, but there are specific people who I would not have survived this journey without. Jon's primary clinic nurse -- Where do I even begin? She not only made Jon feel safe, cared for, and loved, but she empowered me, to be the strongest person I could be. She was with us every step of the way. She truly knew Jon, not just his disease and side effects, but who he was outside of the world of cancer. She was able to give me peace of mind, knowing he was in her care if I couldn't be by his side for a few hours. Letting myself trust ANYONE was nearly impossible... but I trusted her. With his life. With my own, knowing that his life and mine were intertwined. She was our personal cheerleader -- always so excited for any new, happy event in our lives. She laughed with us, and gave us hope for our future. When things progressed, she gave me space. She let me draw my own conclusions while simultaneously offering support. She knew when to speak up and when to hold back. She let me be a control freak. She cried with me. She gave me hope for my own future, which surely was not turning out the way any of us wished. She is the definition of everything I've ever wanted to be as a caregiver. She is the living version of all the words I could not understand when I've heard parents tell me how important I was to them during their journey. And suddenly, I understood. How much of a difference one person can make.

To my fellow nurses, sometimes I know we wonder why we do what we do. We question why we allow our hearts to hurt as part of our career, why we continue our efforts when sometimes things appear so futile and hopeless. But let me tell you, I know why. YOU matter more than you will ever be able to understand. Words and actions that may seem so insignificant at the time have a profound impact on the lives you touch. We've all seen miracles, and we've all seen heartache. What I never truly understood until I was on the opposite end of the spectrum, was that truly the outcome doesn't matter. I don't remember what nurse gave what drug, or the exact moment when I knew Jon wasn't going to get better. But I remember the support I felt. I remember the select few who made the worst, darkest moments -- not better -- but somehow bearable. And we can rant and cry and question all day, but deep in our hearts, something keeps us going. We know why we're the kind of nurses we are. We know why we give our all. And I can promise you, from experience, that it makes all the difference in the world. It did in my world.

As time passes, I will find the words to thank everyone and express the immense gratitude that overwhelms me. For now: To Jon's inpatient team of nurses, to his clinic nurses, to the nurses in the ER who hugged me and who's names I will never know, to my nurse friends and amazing coworkers. Thank you for giving a piece of yourselves, a piece of your heart in everything you do. I am honored to share the same title. <3

"When you're a nurse you know that every day you will touch a life or a life will touch yours"

Finding Hope in Chapters

Sometimes life feels surreal. I'll be walking, feeling the sunshine on my face and in that moment of happiness it's like someone runs up and punches me in the stomach. You know that feeling when you get the wind knocked out of you?? Sometimes it's just a little jab to my gut, other times it's like Jon died all over again and all I can do is try to take deep breaths. Those moments come on all of a sudden, usually without trigger or warning. I wonder if it will always be this way.

I have happy moments. I find them in small things, and I cherish them. I cherish the people around me who bring on those happy moments. But I feel everything so much. I guess I've always been that way. Cry hard, love hard.

Several months into our relationship, I started writing our story down. Jonathan loved to read the new chapters, even though some parts were difficult. My hope is to one day finish the story... although the ending is not what either of us had imagined. A lot of it has already been said one way or another in my blogs, but to have it all in its entirety would be a real accomplishment for me. For now, here is an excerpt from Chapters 10 & 11:

"When I thought about our future together, cancer never factored into my plans. Let me explain. I knew there was of course a possibility that his cancer could somehow alter our future in some way. I had accepted that it would be a part of our relationship -- a large part. And although I had moments where the fear crept into my mind, I never really believed it would change us. I refused to give it that power. I thought of the Nightmare on Elmstreet movies and how if the teenagers stopped believing in Freddy Kreuger, that would take away his energy and he would no longer be able to hurt them. I knew cancer's immense strength, it's sneaky tricks, its ability to ruin lives... but I refused to believe in its power over my Jonathan and our life together. I turned my back on it. I refused to capitalize it in a sentence. My focus was entirely on beating it. I never for a second doubted our relationship's strength... i knew we could face anything together. We had faced difficult times already and I was not naive enough to think we'd seen the last of those hard times. But it never worried me. I worried about Jonathan..about what he might go through, but I never questioned the outcome, or feared for his life or the durability of our partnership.

What I constantly feared was Jonathan's own belief. His positive attitude remained one of the most admirable things about him, but I feared that deep down he might somehow allow the negative thoughts to seep in. I was afraid that all that he'd been through, in addition to the poor scan results and long road ahead might break him down. I was terrified that he would tell me he believed he would beat this thing but that he'd really be seeing question marks. It had taken me a long time to get him to plan things further than 1 week in advance... and he had started to see a future for himself. I didnt want anything to take that away from him. In my mind, if he questioned, even for a second, it would give power to this disease. I never asked for him to say he'd live forever, but I fought hard to make sure he never saw a time limit. We both were unsure of what the future would hold as most people were, but when he said forever, I wanted him to think...know...that his forever could be and would be just as long as anyone else's.

His feelings for me were always clear when I looked into his eyes. It just took him a little longer than it took me to give into them, and for him to believe that I felt the same. I fought hard to break down the walls he had worked so diligently to put up. It's what I do.

The first time he told me he loved me, we were laying in bed in my apartment. We had just shut the light and television and were getting into spooning position when he traced three words with his fingers on my back. Taken by surprise, it took me a few tries to figure out what he was writing. Probably not how he expected it to go. But I will never forget that moment when I realized what he was saying. It was like everything I ever wanted was handed to me in a matter of ten seconds. He loved me. What more could I possibly ask for?"

Chocolate & Vanilla

The following is an email from Jonathan from about a year ago. It pretty much sums us up. :) I don't think I ever truly realized how lucky I was. <3

Laciface,

I need to tell you that there are a few things I'm sure of, and these are things that DO NOT CHANGE. EVER.

The first and most obvious is that I love you. When I say that, it means everything I can possible conceive it to mean. You are a part of me; a part of me that I cherish and want to take care of, to nourish, flourish, and protect like nothing else. You are my other half (my chocolate half, and I'm obviously your vanilla). You can be caramel if you want, but either way you are the other half of me, what I don't have, what I'm not, and the part that I need if I ever want to add up to a whole. And that's the point. Of everything, I think. Because if you go through life always just being a half, then you never know the joy of experiencing wonderful things alongside that person who makes everything that much better.

When good things happen, I need you next to me to share them with me. When bad things happen, like allll the time, you are the rock I need to keep me going. I hope I can be that for you, too, and I'm sorry that most of the time I'm the reason either of us needs a rock at all.

I want to make you happy. You make me happy every day just because I know I have you. I fall asleep next to you thinking how lucky I am, because how many people in the world get to fall asleep in such a perfect place, such an escape from the world, next to the person they are so utterly in love with? Even though the next words you say to me might be "get away," or "too hot," or "no snuggles," I'd rather feel your warmth nearby than anything else. I hate waking up on days you have to leave and realizing you're already gone, not coming back, and I have to lay in our bed all by myself without snuggles. I'm so excited for the idea of sharing a bed for the next 2000 years.

I love thinking about you being my best friend. Being in the trenches with you...it's a figure of speech, but we really are "in the trenches" together more than most couples could ever fathom. But I don't see it as a bad thing. I don't see it as being "stuck," and I really hope you don't either. I still consider myself incredibly lucky because if I HAVE to do it, I GET to do it with you. My love for you is unquestionable. It is also unconditional. I will try to show it to you more, because you not knowing it is inexcusable.

You are my angel. I intend to hold onto you. Even if you yell at me. I yell sometimes too. It means we care.

I care a lot ;)

I love you so much Spaceyface.

Don't Let the Days Go By

Everyone knows Jon and I connected very quickly. The first few months of our relationship are documented in some pretty intense emails, that continued even when we started spending all of our time together. It seems to me as I reread them now, that we joined forces immediately and went to battle. We battled the memories and trauma of all Jon had already been through. We fought the statistics and the threat of all that might be taken away. We worked hard, through our words, (and actions) to convince one another (and ourselves) that things would be okay, and that no matter what, we had each other.

Jon was so worried about me in the beginning, knowing what I was potentially getting myself into. And in these emails where I would attempt to convey how much I wanted to be there, the clarity I had was unbelievable. I was absolutely sure that I wanted to be with Jon, and that meant no matter what the circumstances. The messages we sent to one another are powerful, quote-worthy, and expressive in a way that only truth can be.

We both believed that Jon had seen some of the worst aspects of life -- all the pain and ugliness that can exist in life, but that our love displayed the best of what this world had to offer. In one of the emails, I was upset as I had just seen a young patient die and vividly remembered his girlfriend sitting on the floor, crying. It obviously hit very close to home even though the situation was very different. Jon swore to me that that would never be us. He said our story would always be amazing. And although at the time he was doing his best to promise the un-promisable, in a way he was right. Our story will ALWAYS be amazing. It will always be a part of me. I love and hate that at the same time.

On my way home from work today, I felt like all the strength people have been telling me I have got sucked out... in one swift movement, as quickly as a sad melody can make your heart ache, I fell apart. With every step I took toward my apartment, the anger and frustration seemed to get bigger and bigger. No matter how aware of reality I am, and no matter how hard I try, I can never shake the feeling that Jon might be here waiting for me when I get home from work. It's usually just a split second as I turn my key in the door, that I imagine I might see him sitting on the couch ordering dinner for us.

Tonight, I couldn't take that feeling. I came inside, grabbed one of Jon's favorite sweatshirts, and went to the park. Jon always found crying to be cathartic. I sat on a rock, put on a playlist we had made entitled FML, (which we'd created during one particularly awful chemo regimen), and basically, lost it. I cried for everything we did, all the things that I miss with every beat of my heart, and everything we'll never get to do. As I wiped my tears on the sleeve of Jon's sweatshirt, I thought of just how many tears this particular sweatshirt had seen in the course of the last two years. I could remember the feeling vividly, that instantaneous relief I'd feel when he pulled me close to him and wiped my tears. And then we'd laugh about all the snot on his sweatshirt. Without him here, the tears just seemed endless. As I sat there, feeling sorry for myself, a puppy ran over unexpectedly and licked my face. I couldn't help but laugh. It seemed to be Jon's way of telling me, "Ok, enough being sad. Get back to your life."

I think going back to work has been more difficult for me then I'd realized. Not in the way people expect it to be hard. It's not because I'm reminded of Jon or associate him in any way with my patients, or even cancer in general. It's much more internal than that. I want to give my patients and their families hope. The hope I think I instilled in them before -- the hope that truly was my religion the last two years. And I still do have hope. I'm still trying to hold onto the girl I've always been -- the girl who believed in fairy dust and dreams. I know it's something Jon loved about me, and in truth, I think it's what makes me the person I am. I still believe in miracles . . . it's just that a little more reality has been mixed in.

It just frustrates me how changed I am from this experience. I feel like my sparkle faded, or something equally as dramatic-sounding. I want to shine again. And there are times when I think I do. I am lucky enough to have people in my life who bring that out in me. I'll catch myself mid-laugh, or when I'm smiling until my cheeks hurt, or getting an unexpected kiss from a puppy. And those moments are what keep me believing. I'm not broken, just a little bruised. And I'll be damned if I let myself become something dull and faded. I just have to keep surrounding myself with people who can see me. . . people who see me like Jon did . . . people who still think I'm sparkly despite being a mess sometimes.

I believe -- I have to believe -- there are so many more beautiful, sparkling moments that lie ahead.