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.
