I thought I would follow up the last post with writing about the rest of our trip to nowhere that Thanksgiving, but somehow my brain quieted and went blank, storing the details of that trip away and irretrievable. "Lost File" blinks in my brain when I try to think back on it. Oh,well. I guess it will come back at some inopportune moment, like so many other memories that play hide and seek with my emotions. Instead there is a hush inside, a quiet before the storm I suppose, as I gather and prepare for the lonely week ahead.
There is a recent memory jackhammering it's way through my head, one that stays put in my brain, because there is a constant reminder of it blowing a hole through the sky every night.
A couple of years ago we were driving home in the dark, and we were just cresting Tramp Harbor, and Jeremy exclaimed, "Wow! Look at that moon!"
I had a feeling it was doing its usual gorgeous dance upon the black tips of the water, but I refused to look.
"Mmm hmm." I nodded, not glancing sideways to view the impressive ball of light that was begging for my attention.
"You didn't look at it."
"Mmm Hmm." I said, nodding, fibbing, my eyes trained forward.
"No, you didn't. You didn't look. Why not? You love the moon."
"I don't want to."
I just don't.
"Because I don't."
"Because I'm mad at it! That's why!
"Mad at it? What do you mean, mad at it?"
" I'm just...mad at it, OK?
And so I went into this story, and explained to him why I am mad at the moon.
Throughout the stays in the hospital, we were lucky if we scored a small cot to sleep on at night. All in all, we spent thirty-three nights with Vanessa at the hospital, most of them in the PICU. We slept in chairs, sometimes I would curl up into her crib with her and let Jeremy have the cot if there was a nurse on duty that would let me, but most nights were very uncomfortable, and leaving her was not an option for us, and we didn't. Not for one night.
Vanessa's health was rapidly deteriorating the last two days we were in the hospital with her. We had spent hundreds and hundreds of anxiety filled hours with her there during her sickness, and we were down to dire straits those last two days, and they were filled with massive emotion, praying, pleading, specialists, internists, cardiologists, neurologists, anesthesiologists, anger, sorrow, and confusion. Her body was shutting down, bit by bit, one organ system at a time, all while they worked feverishly to save her life, all in front of Jeremy and I. There is nothing more helpless than seeing your child suffer, when there is nothing you can do about it. It is enough to kill your soul right there. Despair and desperation are the only two words that come to mind, but they pale to the real emotions that were coursing through our bodies.
I wasn't talking much, and when I did, I didn't make much sense. I wasn't praying either, because my head was lost, and couldn't find the words to even pray. Terrified into silence. All I did was shake my head no. No. This cannot be. Not her. No.
The night of her second open heart surgery when she came back to her room, she was unstable, pale, looking like a porcelain doll, and so incredibly fragile. We were barely breathing, and things were not going as planned, but we felt a little better that her cardiologist was in her room with us. Suddenly, a loud flat tone buzzed from outside the room and people went running past the room to the elevators, and I caught sight of a crash cart being wheeled down the hall at a furious pace.
I looked at the cardiologist. She had become close to Jeremy and I, and cared deeply for Vanessa. A nurse hung out near our door, wavering, with a tight look on her face.
"It's Jane (I won't use her real name out of respect). She's coding."
A surprised and concerned look crossed the cardiologists face.
I almost didn't ask but did." Are you going to go? Do you need to?.." My words fell away because I really, really didn't want her to go.
She hesitated and looked at the screen at Vanessa's numbers. The floor was clear of doctors and every once and awhile we would see someone run by, en route to Jane.
"Is she a patient of yours?" I ask.
"yes." She is still looking at Vanessa.
"oh." I say quietly. I don't want to say it but I do. "You can go if you need to."
She looks at the door and pauses.
"No." she says, I need to stay with her. Right here is where I need to be at the moment."
I could tell she was choosing her words carefully, before she said to us, "She is just as...sick right now as Jane, and I need to stay with her. She is very...soft, right now."
"Oh my god." I thought to myself as I sat back down on the cot before my legs gave way. The words hung in the air, all around me. She was saying Vanessa was close to dying. She was the busiest person I knew and she was here, hanging out, which I hated and loved at the same time, but it meant my daughter was sick. Very sick.
Later that evening, Jane, along with an entourage of nurses and specialists, was wheeled into the PICU, just a couple doors down from us. It turns out she was almost ready to be discharged from pediatrics, then her heart went into an arrhythmia that caused her to code. No one knew why, it was just one of those things. I was glad to see that she was here, and breathed a sigh of relief for her parents. That was the night of November 19th.
Two nights later I am sleeping in the cot, and awaken. Jeremy is on two chairs pushed together on the other side of the room sleeping. It is loud. It is the middle of the night. I see people running again, and alarms going off. My cot is underneath the big broad window that lets in the dark, but there is this disruption in the night, this moon, this big, bright, wide full moon that is just sitting there watching all of this unfold. It must have been very windy that night because clouds pushed past it, in a mad rush, just like those running nurses, as the moon illuminated the outlines of them in a dark and creepy way. In my bleariness I realize there is a nurse in our room holding a resuscitation bag and looking tense. The alarm. It's Vanessa's.
The nurse is quieting the alarms, and assures me that everything is OK." It wasn't for a second, she tells me, but everything is OK now."
I sit up and shakily make my way to her bed. She looks the same. Fragile, and so sick. She is on dialysis. She is on life support. There are IV poles and tubes everywhere, and in the midst of it is my baby.
I don't say anything and point towards the other room.
"It's Jane. She is coding again."
I make my way back to my bed and speak to that moon, as if it can help.
"Help. Just, please. Help"
The moon glares back with it's one eye and it blinks every now and again when a thick cloud rushes past.
I awake the next morning and the first thing I do after I see that my baby is still alive, is ask the nurse about Jane. In the night they could not get her heart to return to a rhythm that could sustain, and she passed away. They worked and worked on her, but couldn't save her.
She was only two.
The moon always reminds me of that desperate night, when two lives were almost taken, but one was spared, if only for two more days on this earth.
The moon has lost it's romantic and mystical draw and instead seems harsh, and full of hurt. We have a complicated relationship, me and the moon. I hope someday I can gaze upon it and realize it had nothing to do with that nightmare, but it is hard because it reminds me so much of that night, especially when it's windy. Someday we may be able to make amends, but for now, I pretend it is not there.
Vanessa passed away in our arms nine years ago on November the 23rd.
I don't ask for pity, or even sadness for me, but of remembrance of her spirit and giving it the glory of loving those around you with all your heart. She was love, and light, and the epitome of everything that is good in this world wrapped up in sweet angelic flesh. Honor her by being present in the moment and being grateful to sit next to and eat a meal with your families, and relish the fact that you are all together on this day. Hug tighter. Laugh harder. Forgive easier. Hold closer. These are my struggles this week but if I send out the memo, maybe it will ease my soul to know that friends and loved ones around me are happy.
I will leave you with pictures from the last two weeks, of the second ball of light that plays with my emotions. My sunshine. The light that chases away my darkness. The glow in my soul that makes it impossible not to smile, the light that makes me believe in love again.