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.


  1. Hi Lace, I'm very sorry to hear Jon has been having a difficult few weeks. My thoughts and love are with you both.

  2. Laci ... I am speechless. My heart hurts for you and for Jon. I am praying for you harder than I knew I ever could. .... You both deserve the best in this world... xo

  3. Laci, you and Jon and the love you share is inspiring. It really is the stuff that fairy tales are made of. I'm praying for your happy ending....

  4. What sweetness you both have together.
    You are blessed.

  5. Aww Lacy! I read this with tears in my eyes. Tears of happiness for your strength but also tears of sadness because just 3 years ago I was in the same place you are right now. I met Wade while he was "sick". We went on our first date in between chemo treatments and kept in touch via phone and email. While in remission we spent day in and day out together, never separated. Everyone asked me how could you date someone you know is sick and all the what Ifs but it didn't matter to me. I loved him despite anything that was going on. Cancer came back and we fought through it together

  6. It was very hard! But you realize that you need each other more than ever and the love you have for each other makes the gift even more worth it. Sadly Wade passed November 2009. I miss him more and more each day. Don't give up! Keep fighting and keep loving! You will have that better life that you deserve! Stay strong. You are both in my prayers! <3

  7. Thanks for the great info and the sharing of your insights. Thank you so much for taking the time to write it!