Jonathan the Fearless

Tomorrow morning is the Hope & Heroe's Walk for pediatric cancer.  Although always a cause near and dear to my heart, this year is obviously incredibly different.  As captain of Team Jonathan the Fearless, I will lead close to 40 people in light blue t-shirts on a walk in Jonathan's memory.  I was pretty excited when I started organizing this walk.  It felt like such an amazing way to honor Jonathan and the struggle he faced.  In addition, the foundation raises money for the clinic where Jon was treated, as well as many patients and families I have grown to know and love over the years.  It was never really about the money for me, but the generous donations we have received could truly change lives for children with cancer.  For me, it was more about the "team".  The people closest to Jon -- the ones who loved him most -- joining together to remember him.  Jon was so worried he would be forgotten.  If he is looking down on us tomorrow, he will surely see how silly that notion is.

The truth is, I carry Jon with me everywhere I go.  I don't need a t-shirt with his name on it or a big organized walk.  Every step I take, every action, every movement toward a future for myself, I do with Jon in mind.  I know that the family and friends closest to Jon understand what I mean and live their lives in a similar fashion.

As tomorrow morning draws closer, I find myself feeling angry and sad.  I wish things were different.  I mean, I wish that every second of every day.  I wish Jon and I could walk together.  I wish we could walk in remembrance of the struggle he faced, the battle he had won.  He deserves to be here.  He should be here.  I can't seem to let go of the anger I feel for the fact that he's not.  I constantly feel the world moving forward, myself included.  It doesn't stop moving.  It's a strange thing, actually.  But most moments echo with the thought that Jon should be here for this.  For everything.  Accepting over and over again that he won't be, is the hardest part for me.

I appreciate the support that surrounds me.  The love that surrounds Jonathan and his memory.  I've said it before, but Jon brought some of the best people I've ever come across into my life & I feel lucky in that aspect.  I know there will be tons of people I can count on tomorrow -- to lean on, to hug, to laugh with.  We're all hurt.  We're all angry.  We're all sad.  But we're all better people for having known Jon.

If we can keep moving forward... if we can carry that piece of ourselves that Jon brought out in us, the part he made better... then he will truly never be forgotten.  <3

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"