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.


  1. You truly are an angel Laci. God Bless you and I hope you find peace and strength in the coming months and years.

  2. Your strength is unsurpassed and your story will help empower so many in similar situations. Thank you for being such a beautiful and stable force in this unpredictable world!

  3. Laci, I am so sorry. Your story is so beautiful and so rare in this world. Hold on to that.

  4. Laci.....It is with sadness that we learn of Jon's passing. You really are an angel. Yours and Jon's was truly a love story. I am so sorry for all who knew and loved Jon.
    Rest in Peace Jon. You will always be remembered.

  5. Laci, although I met your Jon only once, it was an honor. I could see how happy you were with one another. I've read his blogs and yours as well. Both captivated me beyond words. A very special young man has been taken from this earth way to soon. God rest him and keep him. The love that you both described was one that probably many people never experience in a lifetime. Although it was only 2 years, it will carry you thru your life. You will go on and you will be happy again someday. And your Jon will always always live in your heart forever. Souls that have truly loved us never die. They always come back when you need them. In one way or another you know he is there.

  6. Laci, thank you so much for sharing with us. You and Jon and your story are such an inspiration. It is so amazing to be able to bear witness to a connection and love that truly transcends all perceived boundaries and is such a testimony to the ability of the human spirit to endure and surpass even the greatest of trials. You two truly have become one in thought and in deed. Your sweet Jonathan will always be with you, because he is in you, a part of you. What a wonderful treasure to take with you as you go through this process. What an awesome, powerful, healing, and sustaining love! I will pray that you never lose sight of this in those dark moments, and that one day you will see that light at the end of the tunnel, with your Jonathon there cheering you on! God bless you Laci, Jonathon's family, and all those who knew him. You are all in my thoughts and prayers.

  7. Dear Lacy,
    Thank you for sharing this story with us, I attended the same college as Jon and although I didn't know him very well, your story makes me wish I had. I can only imagine what you must be going through and all I can say is that you will get through it because you are strong and you have his every lasting love and when you are feeling down just know that the sun always shines :)

  8. Heroes of That Which is Sacred do exist!

  9. You have a gift of writing that absorbs the reader into your world. Don't ever stop. I'm watching a sibling pair go through this and it breaks my heart.I know sibling love is different,but it's still love and you are opening my eyes to the pain the sufferer's sister is going through.She took time off uni to take care of him.They are in a strange city-no relatives around...It's a hard journey.From a strapping young man to being carried into and out of a wheelchair,skin and bones,inaudible speech.It hurts and we only met them because they asked someone to organise a visit to our church last weekend. Oh Laci..Words can bring no comfort to you.But know that by writing this,by documenting, you give insight to those who are watching from the outside.You make it easier to know how to help, when to keep quiet, when to give space, what NOT to say...Blessings and light.You're on a difficult journey. I wish it hadn't ended like this, but it is what it is.

  10. You are phenomenal. <3

  11. So much love to you Laci xoxoxox