They're loving, and praying for, and taking care of their daughter. My cousin Dave, and his wife Linda have three children. Adam, at 17, is the oldest. He works part time, goes to school, plays guitar and writes so beautifully, it will make you cry. Elizabeth, their second child, is so sweet and quiet, and has the voice of an angel. And the youngest is Sara. Sara is my kind of kid. Full of piss and vinegar, has a wicked sense of humor, and is always quick to laugh.
All three children have always been completely inseparable. If ever there were a blood family comprised completely of soul mates, it would be them. Before Sara came a long, anytime you saw Adam, Beth would not be far behind. When Sara was born, she was everyone's baby.
Three years ago, Sara had flu-like symptoms. Body aches, nausea, but no fever. The symptoms persisted to a point when her head would begin pulling to the side. The doctor ordered an MRI.
What they found was ependymoma. Ependymoma is a type of recurring brain tumor that grows on or very near the spinal cord, in a manner of speaking. At the time, the tumor was very slow growing. They were hesitant to operate because Sara was only 8 years old. However, they were successful in removing it. She went into remission for a time, but the long-run prognosis was not good.
You see, ependymoma is a monster of a cancer. It can be slow growing, and it can be removed for a time. However, it always returns. It may not return for a month, a year. Even 10 or 20 years. But it always returns, and it returns pissed off.
Sara just celebrated her 11th birthday last week. She's been through surgeries, chemotherapies, radiation treatments, clinical trials including gamma ray procedures. All have removed most, if not all of the tumor. Her family, our family, has prayed it away. Wished it away, believed that someday Sara would live her life without pills and scalpels and shaved heads.
This time, it took away her smile. She's having trouble swallowing, trouble breathing, she's not able to walk on her own. 11 years old and she is now wheelchair bound with an oxygen tank to help her when she just can't quite catch her breath. Last Friday, her family was ending a road trip in a North Carolina Cracker Barrel. Sara started choking, and went into full cardiac arrest. She lost her pulse and her bowels, according to her mother.
Sara's died once already. Pediatric nurses were having lunch nearby, and some stranger in a gray t-shirt performed CPR on her. They brought her back. Even if she is to die, the God that my family loves so much would not let her die in a Cracker Barrel no where near her home.
I guess the whole point of this entry is that my daughter is the same age that Sara was when she was first diagnosed. I cannot imagine what Linda and Dave could possibly be thinking or feeling. A very selfish part of me is thankful for that.
Every day, I'm dealing with a shitty prima-donna spoiled-brat attitude, and it wears me down. I have two children. Abby is 8 and Andrew is 6. Between the two of them, I spend more time yelling and grounding than I do anything else. Somedays, I wish they would just sit down and shut up and stay that way.
And then I remember how Sara was. And I remember that no matter how annoyed I am, and how I wish they would just LEAVE ME ALONE...my children are healthy. As far as I know, that bastard known as Cancer - the ultimate in chaos, for there is no rhyme or reason to who it chooses in most cases- has not laid claim to my own. I cannot fathom looking at my child's eyes and not knowing if, when they close, they'll never open again.
Most of all, what completely mystifies me - is that through all of this - all of the turmoil, and tragedy - there are a lot of ups. They have a very happy family, in spite of it all. And they have an absolutely unshakeable faith in the Christian God and Jesus Christ. I don't consider myself an atheist in the text book sense, because it's not that I refuse to believe, nor do I demand proof. I just...lack faith. I lack belief. I've tried, I've pretended. But when it comes down to it, I just simply do not believe in any higher power/God/supreme being/supernatural presence.
They do. And when I say unshakable, I mean they watched their daughter slip away from them. They saw her leave - and yet, they still remained faithful. They never questioned why, the don't blame their God for damning them to this existence - destined to lose one of their own.
That, to me, is what's admirable. Not that they've been through all that they have. But that they've been through all that they have and continue to love each other unconditionally with such a fierce devotion, that not even That Bastard Cancer has broken them.
And here I sit, terrified that I'm gaining weight. Or that I may get laid off from my job. Or what if he never marries me?
I mean, really. My children are healthy. My children are ALIVE.
As long as I have that, the rest is just gravy.
If you're reading this, and you have a little time - please, read her story. See this beautiful family, and maybe pray for her. Send some energy to her family. Whatever your beliefs are, however you channel that positive energy to make good things happen, whether in the name of God or Yahweh, Allah or Buddah - if praying for a miracle and for Sara to live is out of the question, please give her and her family all of the peace and well being as they can manage.
http://www.caringbridge.org/visit/saral
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