My Story

Celeste was diagnosed with a diffuse intrinsic pontine glioma (inoperable brain tumor) February 19, 2003.

She completed radiation therapy, alternative treatments and chemotherapy. She was also a clinical trial participant.

Journal

Wednesday, March 25, 2009 4:00 PM, CDT


It's been a while since I've updated and I really do have a difficult time finding words to express how difficult the fleeting years have been since Celeste died. As though it's not been enough to lose a child, I've turned my life into a one woman show with the divorce and exhausting attempts to ressurect a career from shrapnel shells while purchasing groceries, paying bills and managing to look cute on my way back from daycare despite the accusations of being a selfish whore in the miserable suburban concrete landscape lined with palm trees and a constant unchanging temperature.

I have sat down and tried to compile the pictures and journal articles from the original site but had no idea how raw my words could be. I had no idea how much beauty I lost but a quick read of Celeste's precocious journals and I am reminded with the sense of a razor slicing through my neck, a deep drill through my chest plate or maybe even thousands of needles pushed within my skull. Or maybe it's not my time to indulge the impulse of words.

I can say that despite the rhetoric and wishful grins, I have yet to find this 'hope' or silver lining people speak of and I have yet to believe that any G-D would allow this to happen, amongst the other pathetic excuses for life who remain on earth to destroy, kill, steal, rape....

The words, 'heaven needed another angel' don't offer me any peace and thinking of her path as some sacrifice for a greater good rather makes me want to vomit. Knowing that drug companies continue to profit from such clinical trials that have offered no improved outcome for over 50 years only makes me slip into a depression when I think of the pill pushers in their shiny German cars.

It's a bit too much for me to deal with on a daily basis and yet, it's an infected wound beneath the skin. I can't forget it and no amount of counciling or drugs will wash it away. So much for trying to keep a pleasant tone or offering a few tidbits of wisdom. I'm about as wise from life as a rock. I would rather not have a learning experience than have my heart ripped out and flushed down the toilet again.

I haven't been to the gravesite yet. It took my family a really long time to gather money for a marker and it took me even longer to let go of her urn. I ran out of reasons to keep holding onto a vase full of charred remains of what once held my hands with human (glitter painted fingernails) hands. There was no more scent of her skin but ashen dust. No more softness of strawberry blonde waves and curls but a hollow vessel.

I decided to board a plane and leave the urn with Southside Cemetary, alongside my great-grandparents and great aunt where we had a plot leftover from some deal they had back then... but it was the right thing to do and is very close to Frish's broasted chicken and Ester's candy shoppe. We drove that way each day for either chicken, chocolate or chemotherapy. It was the same drive I took with my grandma and the same drive I took on my way to classes at Pitt. It is home. I went alone with my grandmother who has experienced enough hell for the entire world but remains healthy and strong. She has experienced the death of her sister in her early 20's and knows what it is like being a caregiver for someone on hospice. She is the only person I know who has felt what it is like to stick a loved one with a needle on a regular basis. She is the only person I know who is able to find humor in otherwise ackward moments, as morbid on the outside as they may seem. I'm not sure I could survive this without her influence of unimaginable strength.

So, I am over 2000 miles away from home and have nothing but a tattoo that is permanent. I cherish Grant and Ella who keep me amused with new talents, social experiences and accomplishments. But how much different it would be if Celeste were here. That is always in the back of my mind like a throbbing tumor. So, I have tissues just about everywhere for those unforseen moments if I should break out into a good cry. So much baggage to carry, much too much for a normal life. Much too much to feel like Mrs. Jones, or a halfbit of a date. What I want most is already gone, so it's impossible to make many goals. I'm happy to cook a meal or sit and relax to music... not so much graduate studies or a big paycheck. I'm really struggling to exist. I'm glad for the happiness of others but it seems like a foreign emotion... If my mind is unchallenged, it goes into a darkness that is difficult from which to return. I'm not sure where life will take me, but I have never felt more happy to be alone. I write so much and say so little. Only a few people know me and it just happens that most of them are dead.


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thank you everybody for checking in! it warms my heart to know that people are remembering sweet cutie papaya. as for the other survivor moms, idk what i'd do without yous! xo

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