Saturday, December 31, 2011


There is something magical about the idea of New Year's Eve. It's a light at the end of the tunnel -- a chance to start over, a clean slate. January 1st marks the first day of our 'new' selves, our new lives. The entire year is laid out before us and somehow on this one day, we feel like we have control over our destiny.

I don't know if many people can relate, but I absolutely love a fresh new planner. The pages are clean . . . I can throw away my 2011 calendar, full of cross-outs, and scribble. I can flip through the pages and smile at the little drawings of hearts, and smiley faces that mark some happy days, be thankful for those, and toss it in the trash. There's no feeling like it. Despite the surreal feeling the night of December 31st brings, the truth is, we have little control over most things in our lives.

I have mixed feelings about 2011. Part of it, maybe even most of it, was amazing. Jon and I got engaged in 2011. We had countless happy memories in 2011. And although I've always known bad things happen to good people, 2011 seemed to really prove that concept. Besides what has been going on with Jon and in our immediate world, I have seen terrible things happen to some amazing people -- things that have no rhyme or reason and have yet to display a 'meaning' behind their occurrence. I've changed my philosophy as of late -- not everything happens for a reason. Perhaps we are able to take terrible tragedies and find a silver lining, a seemingly positive outcome as a result of those awful things . . but when we really stop and think, was that truly a reason? I know this idea might upset a few people, and believe me, it challenges my own beliefs, but could it be that sometimes, terrible things happen for NO reason at all?

I often think about this in my own life, and try to rationalize. Maybe Jon got sick because he's strong. Don't people like to say, "God only gives you what you can handle". (Don't ever say that to Jon, he absolutely HATES that saying!). Maybe he got sick because we were meant to meet somehow and travel this journey together . . . perhaps as a lesson for both of us as to what's really important in life. Maybe his rare form of cancer and all the treatments we have/are trialing will lead to a cure for him and countless others. Maybe we are meant to have an amazing child someday who will change the world. Maybe someone up there thought we were too lucky in love . . . too happy . . . too good together. (Perhaps that's a somewhat dark notion, but these are the thoughts that run through my head.) Or maybe, it's just life, the luck of the draw. But what about everyone else who faces an obstacle, who loses someone they love? What's the reason there? Who's learning the lesson? And who decides when you've learned quite enough??

I don't mean to seem angry, but I guess I am. All of my friends out celebrating New Year's Eve. Our lives are just SO different at this exact moment. And maybe, I'm a little jealous of 'normal'. I know Jon and I have an amazing love, and despite this seemingly dark post, I am thankful every second for that love . . . but sometimes, for a split second, I am jealous of people who have never been in this position. People who have never watched the one they love struggle. People who have never had their love and future threatened.

2012 holds so many possibilities. Our wedding, June 1, 2012 being the day I look forward to the most. I know Jon and I have many obstacles to face before we can get there. He needs to get stronger. (I've been trying to fatten him up!) He's very s l o w l y improving, and I am grateful for that. I want him to be able to dance (all night) at our wedding! :)

Happy New Year everyone! Whether 2011 was amazing or was the worst year of your life, whatever 2012 means to you, whether you have been schooled in life lessons, or have had very little trouble (knock on wood), I hope you find meaning, peace, and happiness in the new year. I wish you lots of hearts and smiley faces doodled on your planner. :)

Bring it on, 2012!

Sunday, December 25, 2011

Making Sense

Christmas is officially over in 20 minutes. To be completely honest, I've been sad this holiday season. Christmas Eve has always been my VERY favorite day of the year. My entire family gets together, my dad cooks amazing food, and everyone has always seemed... happy. With everything that's been going on, I couldn't help but feel angry at the obstacles surrounding us, and I could feel the resentment building towards, well, just about everyone. Every happy couple on the street, every one of my friends having a "normal" holiday. I found Christmas music to be either extremely depressing or obnoxious ("It's the most wonderful time of the year!" -- yea buddy, speak for yourself.) Yes, I was happy that Jonathan's mental status had improved and that he'd been himself. . . but he just wasn't up for Christmas Eve. He was still having a hard time walking and maneuvering up and down steps. The two weeks in bed had really taken a toll on his body strength-wise.

As much as I enjoyed being with my family, it didn't feel right being at my grandmother's for Christmas Eve without him. It hurt to not have him with me, and it felt like such a letdown. All the Christmas magic I had believed in for my 25 years that was found on Christmas Eve, seemed strangely naive. My fiance was home, missing everything, and I was with my family opening presents, while missing him. My heart ached. I've worked Christmases in the past. I know that people don't always have a "special" Christmas. How naive was I, to think Christmas Eve would stay magical for me? It all seemed so silly. Jon was able to make it to a low-key Christmas day dinner at my parents' house, which was really nice. It took a lot of effort on his part, and I appreciated having him there.

On the car ride home, I looked over at the passenger seat and saw Jon falling asleep. The night before as I drove home from the Christmas Eve festivities, it had hurt to see the empty seat beside me. Tonight, I smiled at the mere fact that he was next to me. Suddenly, it hit me. I was being SUCH a brat. Jon was next to me. Less than two weeks ago, I was crying about him being "gone" and praying to have him back. And this week, just because things were still difficult, I ignored the fact that that wish HAD COME TRUE. He's Jonathan. He's next to me as I write this, watching the NBA.

It was so easy to lose perspective. Standing in Midtown alone the other night while I did last minute holiday errands, watching couple after couple walk to see the tree, hand in hand, not realizing what simple things could so easily be taken away from them. My anger had given me tunnel vision. Granted, I can't be positive all the time... it's impossible.. but let's look at the straight facts. Things could be easier, yes, that's true. But they could be SO much worse. And honestly, when given the choice, easy or Jonathan, I'd pick Jonathan EVERY time. No matter what.

This might not make sense to everyone who reads this. But it's crystal clear to me. As little control as we have over who/when/where we fall in love, continuing to truly love someone is a choice. A choice that's made over and over again, day after day, obstacle after obstacle. It's work. . . with the greatest reward. I'm embarrassed that for a few days, I forgot that. Growing up may mean recognizing that December 24 and 25 doesn't automatically equal magical days, but it also means recognizing the magic in every moment. My Jonathan is with me... that makes every single day magical, and makes me complete. <3

"Unless you love someone, nothing else makes sense." -- e.e. cummings

Thursday, December 15, 2011


SOULMATE: A person with whom you have an immediate connection the moment you meet -- a connection so strong that you are drawn to them in a way you have never experienced before. A related concept is that of the twin flame or twin soul, which is thought to be the ultimate soulmate. In New Age spirituality, the ultimate soulmate is the one and only other half of one's soul.

"I've had this dream before...about us being soulmates."
I woke up to Jonathan mumbling this Wednesday morning. We had had a terrible day on Tuesday, and as I opened my eyes Wednesday morning, I really had no idea what to expect. But, when I looked over at him, it was like a veil had been lifted. We had a pretty great day...I had my best friend back. He still got slightly confused toward the end of the night, but that was fine with me... I was nothing but grateful. I was, however, so afraid that I'd wake up Thursday and he'd be gone again. I told myself that whatever the case, in a way my prayers had been answered. I had thought to myself over and over again, "Please, God, just let me have him back."

Thursday morning, he was 100% back. My best friend, wanted to get out of bed, and wanted a milkshake...and told me he felt like he'd "been asleep" for awhile. We talked about everything that had happend in the last week and a half. He agreed with the decisions I'd made, and thanked me for not giving up on him. He spoke of the future. And even wanted to play our favorite (nerdy) computer game, Out of Order. I felt like crying every 5 minutes out of pure happiness. It was a perfect day.

Jon's doctor thinks it's too soon for the new drug to have turned all of this around, but perhaps his brain needed a rest after the radiation he received several weeks ago. Whatever the reason, we were not giving up. Jon will most likely start radiation to his back next week to help with the pain there, and allow him to move more freely. In the meantime, we will keep our fingers crossed that this new drug does its job. But even if it doesn't, we aren't even close to giving up.

I'm still fearful every second that his brain will "take a nap" again, but in my heart of hearts, I don't think it will. I've always believed when you can envision something happen, when you can actually see it -- not simply imagine it, but almost feel it happening -- then it will happen. I can see our wedding. I can feel standing next to Jon and saying our vows. I can see our future baby. And although I cannot see a road without trouble and obstacles, I can see and feel the two of us taking on the world together. I don't need a "perfect life"... having Jon by my side, regardless of what trials we face, makes it perfect. And although I cannot say with certainty exactly what path our lives will take, I know he and I have so much more to do together. No amount of time would ever be long enough, so I will cherish every moment. Keep praying...this miracle is in full swing! :)

Monday, December 12, 2011

Silly Girl

The last few days have felt like an eternity. Days go by so slowly, and seem so tiring when you're taking care of one person 24/7. I never resent him for it. I know he would do the same for me if our tables had been turned. I often think it could be much worse. At least he is still Jonathan at times, at least he remembers when he has to pee, or can ask for what he needs. I'm trying to be there for him, but maintain his dignity at the same time. The hard part isn't the physical aspect, it's the constant emotional pull I feel on my heart, minute by minute. Torture is the only word I can use to describe it. I often look into his eyes, trying to gauge just how "with it" he might be at that moment. The truth is, I'm lonely. Whether temporary or not, I have lost a piece of my best friend, my love. I try not to focus on that, but the simple truth of it is, I miss him and the way things were. I grieve the thought of never having that back, but at the same time, I am so grateful for every moment with him. The thought that just keeps replaying in my mind is, how did we get here?

He trusts me. He always has. I know that's why he made me his healthcare proxy. I guess I just never thought I'd be making decisions for him. I want to make the right decisions, to do the best for him in every way, but without having him to really talk things through, to validate my thought process, it seems like a daunting task. I take comfort in knowing that we always shared similar values, beliefs, and thoughts...and that every decision I make is purely with love in my heart. Of course I want him with me...I want him with me always. No amount of time would be long enough. But I also don't want to put him through more pain and more sickness. I know that even when he has a faraway look in his eye, he knows I'm in his corner. Perhaps that's why he's allowed his brain to turn off a little. He knows he has someone who will always try to do right by him.

One thing I've always been amazed at from the moment I entered Jonathan's life, was how many people he has that sincerely, truly, love him. I don't think I've ever met someone who's so loved by so many people. Not that I'm surprised. It is comforting to know so many people are pulling for him...for us. I've asked people to pray...something I'll admit I've never really given much thought to in the past. Miracles happen. I've seen them happen... Our love has already been a miracle.

This morning, half-asleep, he said (in our cutesy baby voice we reserve for when no one is around) "You don't want me to leave you, baby?" I said, "No I don't want you to leave me." He chuckled and said, "I'm not leaving, silly girl." Sometimes I think he can read my thoughts.

Keep praying for us. If you don't pray, I'm a believer in positive energy so send some our way. Hug the person you love. It's so easy to take someone for granted, and it's only natural to do so. But if you're reading this, try a little harder to appreciate what you have. And never settle for any love less than a miracle.

“Miracles occur naturally as expressions of love. The real miracle is the love that inspires them. In this sense everything that comes from love is a miracle.”

Saturday, December 10, 2011

We Deserve a Better Life

As I sit here, I am hoping that writing will serve as an outlet for all the emotions I'm feeling, and that perhaps words will replace these tears. In the past, I haven't really kept a steady blog and been specific about what has been taking place with Jonathan, his treatment, our relationship, but I think now might be a good time to start.
I know that many of you reading were directed here from Jon's personal blog, so let me warn you in advance, my writing will never be up to par with his. As you know, he is spectacular.

I met Jonathan almost exactly 22 months ago, and our relationship became incredibly intense and strong in a very short amount of time. (You can refer to previous blogs). Of course when I met him, I knew he was "sick". Even as a pediatric oncology nurse, I was not very familiar with his rare type of cancer. I knew we would have difficult obstacles to face, and more than our share of hard times. We fell in love through email correspondance and, I believe the first time we hung out, I knew he was the person I would want to spend the rest of my life with. I remember thinking, "there just can't possibly be any person better on this earth". I believe my heart was committed to him from the beginning. We were committed to each other. And we re-affirmed that commitment over and over again, with each new obstacle we faced...together.

I won't go into the incredibly long treatment history, or recap our toughest times... I can tell you that lately things have changed, and when I really look back, it's obvious that things have changed drastically. Jon's "cancer" was always present in our relationship, but it never defined it... we dealt with chemo, radiation, appointments and side effects, and then with each hurdle we cleared, we went right back to truly living life with a perfect love. Even during, those things we'd make the best of it. We'd find humor squeezing into a hospital bed together, sarcasm in waiting rooms, and strength in leaning on one another. Yes, it's true... although Jonathan was the one undergoing treatments and dealing with everything, I needed him as much as he needed me...sometimes more.

The last few weeks, I find myself needing him more and more. Jonathan is very sick at the moment, and the disease has caused him to be confused at times... the last few days, it seems most times. It is almost as if he's half-asleep, or drunk sometimes. Some of things he says are incoherent, others are hysterically funny (i've been writing some down), and sometimes he just doesn't say much at all. No matter how confused he is, he always always always knows who I am, and looks at me with love in his eyes. He often just smiles, and when I ask him what he's thinking, he'll just touch my face, or grab my hand. Although I miss "my Jonathan" -- his wit, his sarcasm, his ability to finish my sentences, his infinite knowledge of sports trivia and his unending belief that I might want to hear about it (lol) -- I know he is still in there. And it comforts me to no end to see the love in his eyes. It makes me realize that I must have done a good job loving him these past 22 months. So many things are unclear to him right now, but I can say without a shadow of a doubt, he knows he is loved. He still constantly says I love you, and always responds to my i love you's with "I love you more." He could be seemingly so "out of it", but he ALWAYS responds that way. So, my Jonathan is still here with me.

He does have very fleeting moments of clarity. Yesterday, he was brushing his teeth and I was standing behind him to make sure he didn't lose his balance, and he looked at me and said, "I'm sorry." When I asked him for what, he said very matter of fact-ly, "it must be hard to be with me." I reassured him that, in fact, he was the easiest person to love, and he seemed satisfied with my response. Early yesterday morning, while we were in bed, he looked into my eyes and said, "We really should have a better life." With tears rolling down my face, I agreed. We deserve to have a beautiful, long life together. We deserve to have our wedding, and have gorgeous, perfect, out of control babies. When he saw me crying, he gestured for me to lay on him. He still knows what I need. Ten minutes later, his eyes were glazed over again. But I had him back for a few minutes.

Last night, right before bed, he seemed very confused. As he looked into my eyes, I said, "I really miss you." I wasn't expecting much of a response, but he said "I know." I said, do you realize your brain is a little fuzzy? He said, "Yeah, I know." I said "Do you know you're very sick?" He said "Yes". I said, "I really need you to come back to me... we make all our decisions together.. this is so hard... I didn't even get to say goodbye." And he said, "You don't have to say goodbye yet. I'm coming back, don't worry. I'll always be here to make decisions with you."
Every part of me wants to believe him. He's never let me down before.

Jonathan and I had always discussed worst case scenarios, and what he'd want, where he'd want to be, etc. He has repeatedly told me that our bedroom (to which we lovingly refer to as Snuggle City) in our tiny shoebox apartment is his favorite place in the world. I've taken a leave of absence from work so I can be in Snuggle City with him. Right now, he needs constant care, and his family and friends have been nothing short of amazing. But he needs me right now, and I've never let him down before, either.

The tears often come in the morning, when he's still sleeping. When I wake up and realize, we are still in this difficult place.

We are still doing chemotherapy. We have some other ideas in our back pocket as well. Please send happy thoughts and prayers our way. We're not giving up. Jonathan is a fighter... please pray for our strength, and sanity during this most difficult time. My hope is that in a short amount of time, you will see another blog on his page that will make me look silly. :)

Until then, I will do everything in my power to deserve all the I love you's, sweet smiles, and hand squeezes.