Jenna had been sick as long as I'd known her. Hiding the truth of what she was going through, she preferred to let everyone believe she was a drug addict than let them know how physically broken she was. When we first starting dating she told me her doctor said she wouldn't live more than five years and that she shouldn't have children because it would most likely kill her. It was obvious there was something seriously wrong with her. I had already spent many nights with her curled up in a ball riding out a wave of pain.
Things started getting serious between us and she told me to walk away because she didn't want to put me through the tragedy that would inevitably come. I stayed because I loved her the moment I saw her and I knew it was real. She lived longer than the projected five years and she might have lived longer, having twins definitely took its toll on her body. She began to get very sick in 2009. She saw more than twenty different doctors and not one of them ever offered a conclusive diagnosis of her condition. They said things like “It seems like Lupus, but the tests are inconclusive” or “You definitely have some auto-immune disease, but your symptoms don't fit any of them specifically.” In and out of the hospital, no better than she was before, Jenna had lost her faith in medicine. She knew there wasn't a lot of time left and she told me what she wanted to happen after she died. At the time I thought she was just being morbid, but I am glad she did because in the end it was up to me to make the final decision.
In October of 2012 she finally gave in to her ailments. For about a year before she died she barely ever got out of bed. She slept so much that I wouldn't see her awake for almost a week at a time. She almost never ate, towards the end she had a meal a week. I had to supplement her nutrition with vitamin saturated smoothies that more often than not she vomited up. Her condition got so bad that I could no longer sleep in the bed with her because she would get fevers of 105 degrees and sweat so much that the bed would be soaked, moaning and talking in her sleep. Through all of this she refused to go to the hospital because they always treated her like a junkie trying to get meds. I saw it with my own eyes, the judgment and condescension they treated her with and I could not argue with her fear.
Eventually I had to quit my job to take care of her, thankfully she was getting disability money or we would have gone totally broke. She was no more than a skeleton anymore and to my everlasting shame I began to resent her. Two kids and a sick woman to take care of and all I could do was think about myself. I didn't think she was going to die, she had endured so much. My life had become only parent and nurse, I was angry with her for being so helpless. That has been the hardest part for me. The thoughts that came into my mind. How it would be easier to leave and take the kids, that I could live a normal life if I didn't have to care for her. Maybe now it is easier to only have the responsibility of having to take care of the kids, but there is a hole in my soul.
One day in late September of 2012 I came home from picking the kids up from school. I found Jenna in the kitchen crying. I was already in a bad mood having to deal with the kids and their bullshit. I was not in a sympathetic mood. I asked her why she was crying and she told me she had gone to the bathroom and fallen in the hallway. She said her body had stopped responding, she couldn't see or hear or control her body but she was still conscious. I thought she was exaggerating. I told her she probably stood up too fast and blacked out.
The next day I was in a different room when I heard the most terrible scream I have ever heard. I had my headphones on so loud I couldn't hear myself breathe and her scream sounded as clear as if she was in my head. She told me that she felt trapped in her body with no control and she was terrified. Now I was really worried, I thought she might be having minor strokes. I told her to go to the hospital because she would die if this kept happening. She promised if it happened again she would go. She never got to make that choice. Maybe if I had forced her to go she would still be alive. I will always question myself. Did I do enough to save her? She had been in the hospital so many times before with no resolution I didn't see the point in arguing with her.
Two nights later, I was sleeping on the couch. I woke up to strange sounds coming from the bedroom at one o'clock in the morning as I often did. I saw something that will never leave me. She was bluish white and gasping for breath, eyes wide open but seeing nothing. I held her in my arms and called out her name, shaking her to bring her back to reality. She didn't respond. My heart began to race, fear had taken me over. I slapped her face to make her snap out of it, but her eyes didn't move, fixed in a blank stare. Her breathing slowed, still gasping but fewer and further between. Then she stopped. She didn't take another breath. I tried to feel for a pulse but my heart was beating so hard I couldn't feel anything else. Her doctor had given her a stethoscope, I ran to get it and quickly held it to her chest. There was nothing, not a single sound. Fear consumed me, but I forced myself to focus as I called 9-1-1. Dragging her onto the living room floor I told the dispatcher everything and proceeded to perform CPR.
Within a few minutes I heard sirens and saw lights outside. I ran downstairs to get them and they continued to work on her. In the back of my mind I knew the odds. She was already blue when I found her and this was minutes later. I knew that night her brain was gone, but I still found myself begging the EMT's not to let her die. I pleaded, “Please, I can't do this alone!”, “Don't let her die.” A few minutes into all of this I heard a small voice behind me. “Daddy? Are your friends showing you how to save someone's life?” My heart froze. My son had heard the commotion and woke up. I told him to go back to bed and I would tell him in the morning.
He saw it all. The gurney, the air pump, defibrillator. I told him to go in his room and wait. Jenna's heart started beating again and the medics brought her down to the ambulance. They told me what hospital she was going to and that they would call me for more information. I couldn't go with her because I had no one to watch my kids. When I came upstairs I told my son mommy was sick and had to go to the hospital again. I passed out on the living room floor waiting for the call from the hospital.
Six o'clock in the morning I woke to the phone ringing, it was the hospital. I relayed every single bit of pertinent information I could. I made breakfast, took the kids to school as if everything would be like every other time she went to the hospital. My mother had come to help me, I broke down crying. I told her that I had watched Jenna die, I saw the light fade from her eyes. I knew enough to know that long without breathing would at the very least leave her severely brain damaged. I went to the emergency room. They had dropped her body temperature to try to preserve brain function. She was cold and unconscious.
I was so angry with her. I begged her to fight, but she couldn't hear me. “Just keep breathing” I said, it became my mantra for ten days. “Fight for us! Don't give up, just keep breathing.” I didn't want it to end like this. I stared at the monitor display, watching her breaths per minute and heart rate. Any slight improvement was a ray of hope. That was the longest week of my life, knowing she would be brain dead, but still hoping for a miracle. I have never believed in anything, but I prayed to any deity that would listen to save her. She was in a coma for more than a week before they had a conclusive brain scan. I remained hopeful until the neurologist said that the scans showed 90% brain death and she would never be the person she was again. His “best case scenario” was that she would be able to see but never recognize us and never be able to speak.
The decision to end any further life support was on my shoulders. We had discussed this possibility, but I couldn't believe I actually had to act on it. The following day I gave the approval to unhook her. We had all hoped she would pass quickly, but she was still breathing on her own. When I had a moment alone with her I whispered, “It's okay, you fought enough. You can let go now. I will take care of the kids. You don't have to worry about us anymore. Go be free of this.” Jenna was always too tough for her own good and she held on. The whole family sat with her that day waiting, but she did not let go.
The next day her brother, best friend and I spent most of the day sharing stories, and reading to her. Still she did not relent. A few hours after we went home, when no one was with her, finally she passed away. Just as she had kept her illness from everyone, she chose to walk the last mile alone. She was always so much better than I am, I wish I could have traded places with her. I got to have the best of her even though I couldn't be my best for her. Her light pulled me from the darkness and I will be eternally grateful, without her I would probably have died a long time ago. She still makes me a better man every day for having known her. I can only hope that someone will miss me as much as I miss her when I am gone.