Wednesday, February 22, 2012

i fear no fate

When I was younger, I was convinced something terrible would happen to me. It's hard to explain, but I could never really "see" my future... you know, getting married, having kids, etc. I wanted all of it, and talked about it, and even planned it, but something inside me made it hard to imagine. When I met Jon and he had trouble believing in a future for himself, I thought it was understandable given his situation. He later confessed to me that he had always felt that way, even prior to his diagnosis. He described the feeling the same way I did. He couldn't explain it. Neither could I. Just another part of our connection, our understanding of one another, our secret language.

As much as we truly believed in a future together, his feeling ended up being right.

I keep using the phrase 'in awe' when describing my feelings about Jon. I honestly can't think of a better way to explain how I felt about him. Feel about him. We used to say that we wished there was another word besides "LOVE" to describe how we felt about one another. People say 'I love you' all the time. Both he and I had said it in prior relationships, but this love just seemed like a different thing altogether. This love was real. It was honest and true, and passionate, and sometimes it seemed so big that it was its own living, breathing entity. It was what made our world go round. Sometimes he would say 'I love you', I'd reply 'I love you, too', and then he'd answer, 'No, but like, I really love you.' Two dreamers, found what they were dreaming of.

I miss him. Every second. Sometimes I feel like I'm walking around with a big chunk of me missing -- a big piece that everyone can see.

People keep telling me I'm strong. What would they be doing in my position? Laying crumpled up in a ball, sobbing? Been there. Probably will be there again. Would they give up?

Jon never gave up. He had his fall apart moments, times when it just seemed all too hard. The anniversary (both years) of his diagnosis was difficult. He realized how much his sense of 'life' had changed. What 'normal' had become. Everything he had lost. Everything that he was threatened to have taken away. He was overwhelmed, and angry and sad, and in pain, but the very thought of giving up aroused nothing but fury in his eyes. And he would look at me and I could see that he was grateful for all he had gained. He said he needed very little to give him the will to keep fighting. He was not afraid.

I wonder if my 'feeling' was right. I mean, Jon's was pretty spot-on. What if I'm doomed to live a shortened life as well? My gut feeling is, this very situation is what I had always felt. I believe Jon and I were connected. Perhaps my big fear of not having a future was somehow connected to this very event. This extremely profound, indescribable loss. Part of me is gone. The future I planned, is not happening. I don't say that to be dramatic... It is simply the truth. Leave it to the universe to be all metaphorical.

Whatever happens, I am not afraid. I'm not afraid of anything anymore . . . except maybe this pain in my heart. I worry that I will never be able to feel anything else because it will overshadow everything. But I know that's silly. If Jon and I were so connected, he will make sure I see happiness again.

In one of our early emails when we were getting to know one another, we described our basic likes/dislikes. One of the things Jon teased me about was for saying I liked sunshine and sprinkles. (I mean, most people like those things.) In a later email, he told me he liked making me smile because my smile made the world a better place, and if he could make the world that much better, he'd be happy. (Quite the charmer, huh?) At the end of that email, he wished me a day filled with 'sunshine and sprinkles'. I know he still wishes those things for me.

It really sums up our relationship. We saw so much heartache and pain, and yet our love was a miracle in itself. We were mushy and attached at the hip and probably nauseating to some. We said heaven would be filled with puppies. We believed in magic, in fate, in laying in the sunshine listening to songs. We believed in ice cream and always saying I love you, and snuggling. We dealt with cancer and side effects and statistics and bad news and waiting rooms. We faced 'what if's' and decisions no one should have to make. We called each other 'babe' and couldn't sleep well until the other was home. We danced in the kitchen. We made up stupid songs, played computer games, and laughed for hours at ridiculous inside jokes. We yelled at each other, and then kissed. We fell asleep together in hospital beds. We believed in forever and said 'no matter what'. We talked about what we'd name our kids someday. We planned a wedding. We canceled a wedding. We said our vows alone in our bedroom. We named our bedroom. We talked about death and saying goodbye. I said goodbye. I watched him leave this world. That's enough to make anyone stop believing, isn't it??

And yet, it's enough to make me keep believing. THAT ALL happened. What is there to possibly be afraid of? The world has goodness and beauty in it. Sometimes it's just hard to see.

i fear no fate(for you are my fate,my sweet) -- e.e. cummings

Tuesday, February 21, 2012

Love, Music, Dreams

Jon wrote a bunch of songs in the course of the two years we were together. I remember him coming over after writing music with his best friends and being so excited. Band rule was to not share songs or lyrics until they were complete, but Jon was never good at keeping secrets, especially from me. He made me swear that when the band did perform, I'd pretend these songs were all new to me. I guess now is an ok time to confess that I even helped (as best as a non-musician could) with some of the songs. Don't be mad, Dan and Joey! ;)

I loved watching him hum a new melody, or try to play the chords on his keyboard. I loved the excitement and light in his eyes when he would show me new lyrics or when a song would start to come together. I was SO proud, in awe really. But I usually felt that way any time I was around him. I remember being in Jon's parents house and he would show me songs on the keyboard in his room, or even the piano downstairs. Didn't matter if it was 3am, if he was feeling musical, he was going to express it. Sometimes we'd be in the middle of a conversation and he would stop and say, I have to remember this melody. I vividly remember him coming over to my apartment in Forest Hills (before we moved into the city) after his band had finished one of their (now) major songs, and I wanted it to be about me so badly. Half-jokingly I said, "When are you going to write one about me?"

And then he did.

I had mentioned in a previous post that Jon often sang to me when I was upset, or worried, and that I had sung to him while he was dying. Jon never got to perform the song he wrote for me. It kind of sat in his notebook for awhile, as there were several songs that were written around the same time that the band was focusing on. But Jon sang it to me countless times. Those private serenades are something I will always remember. Closing my eyes and hearing his voice in my head still calms me down. Just after Jon died, his best friend Dan sent me the only recording they had of Jon singing my song -- he was teaching it to the band. Although it is hard for me to listen to, I am thankful that I have it.

This Friday night, the band is performing in tribute to Jon. It will be the first time "my song" is performed, and my heart hurts knowing that Jon will not be up on that stage singing it. He wanted to so badly, and I prayed he would get to at least once before we lost him. Watching him on stage made my face hurt from smiling. It made me feel warm all over and truly, truly proud. How could one human being be so incredible? And how could he pick me?

The more I listen to the song he wrote for me, the more haunting it becomes. The line that always gives me chills is, "I'd leave this world so happy if I had this girl" and "When I leave this world, I need this girl." Before he died, I made sure he knew he had me and it was okay to leave this world, although inside I was begging for him not to.

But today when I woke up, a different part of the song was in my head. I never really focused on the beginning of the song before, but this line: "Better to see it coming/ than not see you at all", keeps repeating in my mind. Jon was sick when I met him. As much as I didn't want to, I could see the possibility of this heartache from the beginning. It was always a threat. I have never liked the saying "Better to have loved and lost than never to have loved at all." But this seems to fit. Better to see it coming, and face it, together with an amazing love, than to not feel this pain and have never seen Jon.

Aside from Jon being healthy, there is nothing that I would change. Even knowing what I know now, and feeling the heartache I feel at this very moment, (and it seems every moment in the last 17 days) I wouldn't have run away. I wouldn't have held back. I loved that man completely, with every part of me, and he loved me just as much. Somehow he was wise beyond his years. Somehow, the song he wrote, wasn't just about me, it was for me. He's still finding ways to be with me.

It feels like I'm re-learning life. I started therapy recently, and while talking about my feelings, I guess I have a tendency to not finish my sentences. The therapist had to keep asking me to complete my thought. The thing is, Jon was who I told my feelings to. And with him, I never had to finish my sentences. He knew what I was trying to say. Come to think of it, he and I sort of had our own language in a sense. I'm not saying we could read each other's minds, but in a way, we really could. He completed me. Life was easier with my best friend. I miss him constantly.

I used to have these nightmares when Jon was really sick. In the dream, I'd be trying to get in touch with him, but either my phone wouldn't work, or the text wouldn't send, or some other nonsense. And I'd wake up with this sense of panic, only to realize he was right next to me. It's much harder to wake up and realize I truly can't get in touch with him. At least not in the way I'd like to. I feel him around me, but it is hard to have faith in such silence.

In the first few weeks we were together, Jon told me he constantly had nightmares of something trying to kill him. (Makes sense, I guess). So one day, I went to an antique store while he was getting voice lessons and bought him a dream catcher for $1 for his bedroom at home. His nightmares lessened, and finally stopped. He attributed that to me being next to him, but I took a chance and after the funeral, took the dreamcatcher home to my bedroom in the apartment. I'm hoping there's some magic left in it.

I don't know what the future holds. I do know that I am forever-changed in more ways than one. And somehow I think it's a good thing. I've found strength I didn't know I had. I will never take things for granted. Maybe this is all part of some cosmic plan for me... But I'd give it all up to have him back. I am realizing now, he will always belong to me. Just in a different space and time.

love is a deeper season than reason, my sweet one. -- e.e. cummings

Monday, February 13, 2012

A Better Place

"I appreciate everything you do for me, and the way you love me makes me feel like the world is just a better place than I know it really is. I hope knowing that I love you makes the world a better place for you too. :) I never realized that loving someone could do that" -- JHS

I found the above in an email Jonathan had sent me awhile ago. It makes me smile . . . and cry. Jon was going through something so awful when we met, when we fell in love. He could have been in such a dark, pessimistic, angry place and anyone would have understood. But instead, our love made him see good in this world. A world that had been unkind and now seems so heartless at times. It made me believe, too. In my profession, I was no stranger to sadness and heartache. I've seen it too many times -- the best kids, the best families, the best people, endure the worst. I could have met Jon, realized he was sick and ran the other way. Experience should have told me to do that. But instead, it was the opposite, and that's something I will never be able to adequately explain in words.

Our love made me believe in magic, and I'm so angry at myself in these particular moments where I feel like I won't ever recover. These moments where the tears won't stop and the world seems so vast and lonely. Where I feel like the best part of me, might have left with him. The truth of the matter is, I experienced something amazing first-hand. I actually have proof that true love exists, that good things do happen, that magic is real, and being drawn to someone is a real thing. But then I also know first-hand that pain exists, that people we love die, that fairy tales don't always end happily. I remember finding Jon, and feeling our connection . . . and then I remember losing him. Both moments seem to fight for space in my mind with equal detail. I wish I could forget the latter. I was honored to share his last moments with him, but now he's gone. And no one will ever know what it was like. No one else shares the burden of that memory that replays itself in my mind, over and over. It's a weight on me; something I will have to carry with me the rest of my life. I feel like it's changed my DNA.

I guess I never really felt like everyone else. I always felt like I had to explain myself more than other people. And then I met Jon. And suddenly I didn't have to explain at all. We could have a conversation with a few words and understood each other with one look. It was just easy to be. And I guess besides being sad and simply missing him, I just feel like things are hard. It's ironic that a relationship where we faced so many more challenges than your average couple could have actually been easy; How something so complex made sense of the world.

Now nothing really makes sense. There's no handbook or guidelines here. How I feel changes from moment to moment. I feel blessed for knowing him. I feel honored that he picked me to share his life with. I feel angry that he's gone. I feel empty for losing a part of me. I feel guilty for thinking of my future.

It's been almost 10 days. The longest, most exhausting days of my existence. And I feel guilty for wanting to get my life on track. Starting with exercising again, seeing friends, going back to work in a few weeks . . . and then there's the questions: How long do I wear this engagement ring for? It's beautiful and meant so much to Jon and means so much to me, but it's also a promise that's no longer happening. I'm not thinking of falling in love with someone else tomorrow, but what if somewhere, down the line, I feel a connection to someone? When is that "ok"? Everyone will have their own views on this, but the only opinion that matters to me and the only truth I can find is closing my eyes and thinking of Jonathan and what his answers would be. I think of Jon watching over me. I think of the conversations we had before he died, and I know what he wants. He'd be pissed I'm sitting here feeling sorry for myself. He wants me to live my life, and I don't think he left this world with any doubts about that. He wants me to be happy, and I feel like he's going to show me how to do that. Somehow I don't think something mediocre is going to be how my next relationship happens. I think Jon will show me the way, in a way that allows me to believe in magic again. Because he loved me that much, and I do not believe you feel jealous or resentful in heaven. And because I know our connection is not severed by death. I know there isn't another Jonathan out there, he was truly one of a kind. and I'm not looking for a replacement. But I honestly don't think my angel would spend two years with me, show me true love and then leave me to mediocrity. I believe that someday there will be something just as wonderful . . .

Despite the range of emotions I feel every day, there are a few unwavering beliefs that I have taken from this experience. I hate to be cliche, but life is short. Sometimes, ridiculously short. Because of Jon, because of this experience, I will never settle for anything less than extraordinary in any aspect of my life, because I know it exists. I know this because Jon existed. I will do everything in my power to make sure the people he cared about and surrounded himself with, as well as all of my friends and the people I love take a lesson from him...from us. So I guess I'll have a big mouth for awhile. I might say things that piss you off, or make you feel challenged or uncomfortable. Just know it's out of pure love. I don't presume to be wise or know what's best for anyone, but if I love you, I will push you to be your very best self. Take chances, love with all your heart, and don't settle. Jon used to say in the beginning of our relationship that I made him feel uncomfortable "in a good way". My love, our connection, shook up his existence...changed life as he knew it. It turned my life upside down, which was pretty comfortable at the time, and it was scary and risky and beautiful and profound and as I write this I wouldn't change a thing.

I am who I am because of knowing someone so incredible . . . because of going through something so amazing and terrible at the same time. And I can honestly say that as I finish this blog, the tears have stopped and I realize how lucky I've been. I've been focusing lately on the fact that Jon really lived in his 25 years, but I'm starting to realize, so have I. So maybe the best part of me isn't gone. Maybe it's yet to come.

Jon's love did make my world a better place. And that carries on.

Friday, February 10, 2012


Monday night, I felt like dying. I wasn't suicidal or anything like that, but as I laid on our bed, my face buried in the stuffed animal puppy Jon gave me last Valentine's Day and broke down, I could not imagine the flow of tears ever stopping. For the first time since losing Jon some two days before, I could not feel anything but pain. There was no feeling of peace; no relief, and certainly no hope. As I cried myself to sleep, I spoke to Jon in my head. "Jon, you told me I would be ok. Well, I don't feel ok. I feel like things will never be ok, so you're going to have to help me out."

I woke up Tuesday morning, the day of Jon's funeral, with a sense of complete and utter dread. I had already said goodbye... probably more times than anyone else, so why did I have to bear witness to yet another torturous goodbye? As my mother and I drove on the Palisades Parkway toward Rockland County, we passed the Scenic look out. Without really thinking about it, I asked her to pull over. Let me explain why.

About a year and a half ago, we had a meeting with Jon's primary oncologist who told us Jonathan's most recent scans had shown progression, rather than improvement as we had hoped for. Prior to that, we had been so hopeful and literally, so close to clear scans, that this was devastating news. Jon and I had only been together for a few months at the time, but were already discussing our future together. Anyway, that night, Jon's parents had met us at the hospital so we had separate cars. Jon and I made the drive home together, on the Palisades Parkway. Jon didn't want to talk. He said, "later". As we were coming up on the scenic lookout, I said "Are you in a rush to get home?" He said "No", and somehow knew what my idea was.

We had never stopped there before, but he pulled over and we got out of the car. It was dark, and freezing, but the view of the city was pretty amazing. We silently walked together, and then stopped. Our arms around each other, we didn't say a word. We cried, and held each other tighter, then wiped our tears and silently walked back to the car. That night, we re-affirmed our commitment to one another. Standing there, looking out at the city, freezing, we knew the road we had been on was about to get harder. We needed no words to make the decision together to keep fighting and for it to always be about the two of us. We never spoke of that night or what it meant until Jon admitted later that he had thought about proposing there. I had had no idea that it had meant as much to him as it did to me.

So, February 7, 2012... I told my mother I need a minute and got out of the car. I walked to where Jon and I had stood, and felt the sun shining on my face. I asked him for strength. Although physically alone this time, I could feel Jon with me, reaffirming now his commitment to me... showing me that he was not in a coffin in a funeral home...he was not in that body that I had loved so much but that failed him in the end. He was with me...around me. So I wiped my tears and walked back to the car.

The funeral was a whirlwind of people. There were people I had never met, people I appreciated coming because I wasn't expecting them to, and then there were the select few I burst into tears when I saw. Jonathan's clinic nurse, who loved him as much as I did and had gotten me through so many rough days, and our social worker who had made it possible for me to be home with Jon these last two months. She made it possible for me to be able to only focus on Jonathan. I will be forever grateful to these people, because in the end, they changed the course of our world. They made an impossibly awful situation, as good as it could have been.

I was able to place the wedding band on Jonathan's finger and say goodbye one last time before they closed the casket. As his sister, Katie, and I walked up to the coffin together, I kept reminding her not to save this image. "That's not him, Katie. It's just his body." Although she is 22, I felt (feel) protective of her...I have a feeling I'm channelling Jonathan's feelings toward her. :)

I don't know how I got through my speech (see previous post), but when I was standing up there at the podium, I just remember thinking, everyone deserves to hear this. Jonathan deserves me to be strong enough to say these words. He was always so amazing with words and although I'm sure his speech would have blown mine away, I think I got the point across. The thing is, there are people who knew Jon before he got sick and some of them I think have this image that once he got diagnosed it was all downhill from there. I wanted to make it clear that our love, right smack in the middle of the biggest downhill of his life, made his world better. I wanted it to be clear that Jonathan lived.

Standing at the burial was difficult. I started to feel the slightest bit of panic. That's Jonathan down there. Why are we covering his casket with dirt? He's going to be gone forever... and then I felt the warmest ray of sunshine surround me. I calmed down, and realized Jon was again reminding me, he was there.

Back at the house, Shiva was another whirlwind of people. In and out with food and cards and hugs and introductions... It was exhausting. Most people don't know what to say, some shared amazing stories with me, others I found myself comforting. It was amazing to see the outpouring of love for Jonathan. So many people had admired him and came to tell me how wonderful they thought I was. I remember thinking, me? All I did was love him. I guess I was pretty good at it though. ;)

As the three days came to a close last night, I felt a mixture of emotions. The Rabbi (who was very sweet) told a story about the Jewish belief that life goes on. He made reference to some reading in which a wedding procession and a funeral procession are stopped at an intersection and the question arises, who should wait? The teaching of the story is that the wedding goes first because life goes on, and although it made sense (much more when he told it) I couldn't help but feel utterly pissed. Why didn't our life go on? Why didn't death, this funeral, have to wait for our wedding? Hearing his friends tell stories about him that were just "so typically Jon" made me smile. Hearing people talk about his accomplishments made me feel so proud and yet so angry. Someone that special SHOULD be here. The general consensus was that Jon had lived more in 25 years than most people do in a lifetime. But why?

Jon's best friend, Dan, and I went up to Jon's room. I had given Dan the book Jon wrote song ideas in from our apartment, and in his childhood bedroom we found even more. Most of the ideas from the book in the apartment Jon had shared with me in one way or another, and I knew Dan would be the only person who could take those words and turn them into a song.

When we started skimming through the papers and books we found in his room though, there seemed to be a common theme. It was like Jon knew somehow that his life would be short. It was profoundly disturbing and somehow gave me a sense of peace at the same time. On the drive home, I started to think, it all seemed too well orchestrated.

I found out that the moment before Jon and I had met, he had been lamenting his lack of a girlfriend. Our mutual friend told him to make a list of qualities he was looking for in a girl and keep it with him. After he did that, and was continuing to complain about not finding love, she said he stopped mid-sentence when he saw me. The rest is history.

The common theme in all the stories Jon's friends were telling, had to do with Jon being so motivated to create... how they'd want to just hang out and relax and he'd hear a melody in his head and want to work on writing songs. The story of how Jon met one of his best friends from college, Joey, (who eventually became one of the three original band members) just felt like Jon picked him. Maybe he picked all of us. Believe me, I'm honored. I just can't help but feel like I have little control over things. Maybe Jon was placed here for a short time, to do these amazing things, and we were just a part of that plan. And I'm ok with that... I think. It just makes me feel like I had this grand purpose, to be such a big part of Jon's life, and be there when he needed me, etc. And I'm not sure what my next step is. I know he will show me the way, and it's comforting and scary at the same time -- to feel like your next move is already planned out for you. (This coming from a girl who is a control FREAK).

I was speaking to Jon's cousin's wife, Rachel, and I was trying to explain how I felt. I was feeling sort of guilty during Shiva for not being more inconsolable, but the only word I could think of to explain to her that I was feeling was "accomplished." I feel like I accomplished something. That may sound weird, but I loved Jonathan with all my heart and so many amazing things came out of that, and in the end, I was there at the last second and I feel like I sent him off to leave this world with no fear in his heart and all the love in the world. Somehow, that makes me feel accomplished. It may sound like a silly word to use, and maybe words don't do it justice in an explanation, but it makes sense to me. And it goes along with my theory that I had a special role in Jon's life.

Maybe he was an angel -- sent here to teach us something, to be here for a short time, but to show us how to live, how to love. Maybe he had so much energy because all of his special-ness and talents couldn't be contained. Maybe he always somehow knew intuitively that his time would be short. And if I was a part of that, maybe there are more big plans coming my way.

Whatever the case, I know he'd want me to be happy. And something tells me, he's going to find a way to make sure I am, in a big way. Subtlety was never one of his qualities. <3

"In the night of death, HOPE sees a star, and listening LOVE can hear the rustle of a wing" -- Robert Ingersoll

Tuesday, February 7, 2012

Love is Stronger than Death

I read this at Jonathan's funeral today, for those of you who were not able to be there, I thought you still might like to read it. Thank you all for your support & kind words.<3

I could go on for hours about Jonathan. I'm standing in front of all of you who knew and loved him. Some of you have known him your entire lives, some for just a short time, but all of you, loved him. I know this for a fact because, it is impossible not to. Jon was beyond special. I hate using the past tense because I do not believe for a second that just because his body is gone, that he and all the amazing things about him are gone. When I first met Jonathan I was amazed at how many special people he had in his life. I had never known anyone who was so admired and loved by so many. I am envious of all of you who knew him before me, who have countless memories and fun stories. But in truth, I got the best part of him.

I was drawn to Jon a magnet I wanted to be near him. I wanted to know him. My first few moments with him, I knew right away that he was simply amazing. I dove head first into loving him. His smile lit up every room, and warmed my heart. I remember he was hesitant at first. We both knew he was sick and the possibility of what could happen...he wasn't sure he wanted to bring someone into that. He had just been through 14 rounds of high-dose chemotherapy after being told he may not live. It was difficult for him to see next week, let alone a long term relationship. But I persisted, telling him he was allowed to believe in a future for himself, that he deserved that, and soon enough, he did. In my heart, I know that that belief is what kept him going against all odds.

For most of our relationship, cancer was just a crappy obstacle we had to deal with. We had a full, happy life together. Jonathan felt pain every day, but swore it was worth it and would never stop him from having everything. Reading his words, listening to him sing, watching him perform on stage, smiling that smile that everyone knows and loves... I was in awe of him, every day. We completed each other.

These last two months have been the hardest I have ever faced. People keep telling me how strong I am, but in truth, it's just love. When you truly love someone, you take on their troubles, you face whatever comes your way, no conditions. The other option is to fall apart -- but what good does that do anyone?

Jon hated when people said "things happen for a reason". He believed we were meant to meet, at the exact moment that we met, but he never and I never would accept a 'reason' for someone to face so much suffering. I do know that I made a difference in his life. In a way, our love allowed Jon to believe in magic again -- after his world had been so shattered. I met him when he needed that most, and loved him through it all. I am heartbroken and honored at the same time to say, I loved him through his last breath, the very last beat of his beautiful heart.

Jon's love surrounds me every day. While there are times I am inconsolable and just want to crawl into bed and stay there, I will remember Jon's arms around me, telling me it will be okay. He was a big believer in crying it out, not holding in your emotions. So I'll cry for awhile and then I will remember all of the things Jon did not and will not ever get to do... all of the amazing things he did, and all that he could have done if given the chance. And that will make me get out of bed. Because if given the chance, he might have changed the world. He surely changed mine. Because every moment is a gift. Because if we don't take chances, the way that I did i loving Jonathan, we will surely miss out on the most beautiful things in this world. And mostly because I know he will love me through this.

A few days before he died, I told him I was so afraid that I would never be okay without him. He said, "You will be. You will be sad sometimes, that's a given...but you'll be happy again."

I miss him. So much it's impossible to put into words. Although we didn't get to our wedding, he was my husband. Our souls are connected. I carry his heart in mine.

Lastly, I wanted to share with you part of Jon's wedding vows. Although he wrote them to me, they could have very easily been mine. I want you all to know without a shadow of a doubt that although he is gone too soon, he lived. Although he did not get the life he truly deserved, he did find love. And knowing that I gave that to him, knowing that someone as special as he could love me as much as he did, is what keeps me breathing. He often called me his angel, but he is mine.

"Beyond the struggle I found a love. Beyond the trouble, I found a love. Beyond the long days, the one days At a time, the hard to get out of bed days, the don't wanna get out of bed days, for every kind of day, I found a love beyond love. Call it unconditional, call it unconventional, call it inspirational, meant to be; call it what you will; I found the love that I never dared to believe existed for fear of never finding it.

I've said before that anyone we can find in this world who can make us feel those things, those wonderful things, that we didn't know were possible to feel must be an angel. On a few special occasions Ive told you that I've found my angel in you, and that reality hasn't changed. I'm still trying to figure out how I've managed to keep my angel with me every day for so long, and I'm so grateful for the opportunity to make you happy every day for the rest of our lives. Through good and bad, thick and thin, I LOVE you with a love beyond love. And with every single part of me, I love you completely."

The truth is, no amount of time would have ever been long enough. And although I am falling apart inside, I still consider myself lucky.

Sunday, February 5, 2012

More Than Life Itself

It's been 45 hours without Jonathan. Until last night, we hadn't slept in different places in over a year (since we moved into our apartment). Right before that, he had traveled to Israel for 12 days and I felt lost without him. He completed me. The other side of the world felt too far away. It hurt. I wrote him a letter for every day he was gone. Anyone that knows us knows we were pretty much attached at the hip. It really had nothing to do with him being sick... we just always wanted to be together. At parties, we'd find ourselves engrossed in our own conversation, cracking up in a corner somewhere. We'd leave events early so we could get home because we loved nothing more than snuggling together. We were always touching in some way. Our connection was (and is) undeniable.

As Jon's disease worsened the last two months, we'd faced incredible ups and downs. We lost him for a few weeks in early December (if you recall from my past blog posts). He was confused, and mentally, just not himself. And every day I prayed for him to come back to me. And he did. After that, I got almost a month with my best friend. My smart, funny, sarcastic, talented best friend. He was weak and had a hard time walking to the kitchen. And then the kitchen became too far and he could only make it as far as the bathroom with help. He spent hours on the couch with me, cracking up at mindless tv. And then the last few days, he didn't want to leave the bedroom. It was just too hard. When I think back to the months before, we lost things little by little. It was too hard to go in the ocean because of his unsteadiness on his feet. Stairs were difficult. Then our favorite restaurants seemed out of reach. Then the hill to the park was just too steep... Little by little our world became smaller until it was basically confined to snuggle city. And in the end, our goal to keep him out of the hospital, was obtained. He wanted to stay in snuggle city... just the two of us. And that's exactly what happened.

Since he died, it seems like one loss after another. There are so many little things that happen on a daily basis that people don't think twice about... until those things are gone. I miss everything. I keep smelling his t-shirt and imagining cuddling next to him in bed, my face nuzzled into the back of his neck. I wonder if I will ever feel as calm and peaceful as I always felt next to the warmth of his body. I know he is with me. I can feel him around me, even at this moment. I don't feel the emptiness I was afraid I'd feel. I feel angry, but most of all, I just MISS HIM. Plain and simple.

I wasn't planning on blogging anytime soon, but I need a release for the overwhelming amount of pain I feel. If the following is too hard for you to read, I apologize.

Friday afternoon, February 3, 2012. Jonathan was feeling pretty awful, as he had been for a couple of days. His parents came for a visit. His best friends, Dan and Joey stopped by the night before. Jon was especially crabby, which is how I knew he truly wasn't feeling well. He did not want me to leave his side. I read books and watched tv on the iPad while he slept next to me most of the day. Before I went to sleep, I told him I loved him, and he said, "I love you more than life itself, sweetheart." Something about the way he said that gave me knot in my stomach, but I shrugged it off, kissed him, and rolled over. Around 1:15am, he changed his position and, as I always did, I asked him if he was ok and if he needed anything. He said he was cold, so I pulled the blanket up to his neck and asked if I could snuggle closer to him. He said "Yes please." Two seconds later, I saw him tremble a bit, and watched his eyes roll up into his head. I assumed he was about to have a seizure (as that's what had happened in the past.) A few seconds later, with his eyes still like that, he tried to sit up and let out a cry. Not a painful cry.. a sad cry, with one small tear in the corner of his eye. I laid him back onto the pillow and told him it was ok, just relax, I'm right here. His body seemed to relax, and with his eyes closed, he began breathing very irregularly -- quickly at first. I rubbed his head, put my arm around him, and did not stop talking into his ear. I was expecting him to come out of this "episode", but once the breathing changed, I wasn't so sure.

My heart was shattering, and my own legs were shaking, but I knew that I needed to be there for him. I knew he would keep fighting just to be here for me. So I told him everything: I told him how much I loved him. I told him that I knew how much he loved me. I told him it was okay to rest...that he had fought so hard, and I was so proud of him. I promised him I would be okay somehow and not to worry about anything if he was too tired. I swore to him that he would NEVER be forgotten. My main concern, besides pain/suffering (which thankfully he did not seem to be feeling), was that he might be scared. I needed to make sure he was not afraid.

Being the nurse that I am, and feeling disbelief that this moment might actually be happening, I opened his eyes to check his pupils. Once I saw them, and realized they were not responsive to light, I knew he was most likely herniating from the pressure in his brain, and that he would not come out of this. (Feel free to google these terms, but I don't recommend it). I just kept praying, please God, at least let him go in peace. He deserves that much. I sang to him "You are my Sunshine" (he would always sing this to me whenever I was upset/worried). I also sang the lyrics to a song he wrote for me... "I'd leave this world/so happy if I had this girl" It seemed fitting as I very well knew he was on his way to leaving this world, and he of course, had me. As his breathing slowed and became more shallow, I suddenly had the urge to lay on him. Whenever I was sad or worried, even during the period when he was confused, he'd have me lay on his chest. The sound of his heartbeat would slowly stop my tears and calm my own heart. The moment I laid my head on his chest, I closed my eyes and tried to savor the sound of his heartbeat. And it slowly faded, until all I could hear was my own pulse pounding. I have no doubt that he waited for me to lay on him, one last time. Our connection was there despite what was happening to him physically.

The moment his heart stopped beating is something I will never forget. It is what makes me feel peace, knowing that I was there for that moment... that I (hopefully) gave him the strength and comfort to let go. It's also a moment I cannot shake from my mind. It was traumatizing to not hear the heartbeat that had been such a comfort to me.

Before he was gone, I tried to memorize what it felt like, laying on him while blood still pumped through his veins. I tried to memorize the warmth of him... his scent... his lips...his cheekbones...everything. Knowing that the rest of my life, I will never get to see him or feel him close to me again is unimaginably heartbreaking. Words do not do it justice. The pure sorrow I felt once I realized he was truly gone, was something no one should ever have to feel. It was indescribable. Earth shattering. Defeating. Hopeless.

Despite those feelings, and the immense sadness I feel at this very moment, I feel honored to have been with him. He needed me. We had a life together. There was nothing I wouldn't have done for him. I cared for him 24/7 these last two months... so I feel like my grief is somewhat different. He was my purpose. I know we were meant to find each other. I know I was meant to be here for these last two years. He deserved so much more than he got out of life, but he did get love. True, honest, unconditional love. I know I was meant to love him, and for reasons I will never fully understand, I was meant to help him let go. And I find comfort knowing that he was never alone, and that he wasn't afraid. The cry of sadness I mentioned earlier, I believe was his way of saying, "I wish I didn't have to leave you."

I know he will always be with me. I know he wants me to be happy, and although I cannot see the light at the end of the tunnel just yet, I know he will show me the way. When I close my eyes, I can feel his arms around me. When I talk to him, I know I'm still talking to my best friend. And although I'd give anything to touch him again, to feel his warm lips on mine, or his arms around me... I know he's not in pain anymore. I know he would've gladly accepted the pain if it meant more time with me, because he was the bravest, most selfless person I've ever known. I will forever be grateful for his love. I will forever be angry at the monster who took him away from me... from this world.

I've never really known what to believe about loved ones "staying with you" after they pass. When Jon's body finally gave out, it was immediately so clear that he was no longer in that body. And although nothing can replace the physical presence, I can honestly say I feel him here. His love really is carrying on...surrounding me...from another place. I guess that's what he meant when he said he loved me more than life itself.

We loved with a love that was more than love.