I am also here to talk about what happened after Sierra was born on May 4, 2005. That miraculous day we learned that scientific observation is not always correctly interpreted, and doctors' prognoses are not set in stone.
This is the story of pregnancy, devastation, technology, stress, incarnation, deliverance, faith, and joy. This is the beginning of a life. Sierra Grace Scott-Russell. Born May 4, 2005. 6lbs, 12oz. Eyes blue, hair light brown. This is a story about a mother whose unborn child was diagnosed with Dandy-Walker Variant, hydrocephalus, and agenesis of the corpus callosum. Expecting parents, if you have found this place looking for information, welcome. I share my experience, general information and support to those in need of solace. The truth is out there. You are on your way. Don't give up on your child. Believe in miracles. My name is Rachael. I am here and so is my beautiful daughter. See for yourself. http://sierragrace.myphotoalbum.com
My research sources, recommendations
I made a place for her: preparing for a special needs child
Birth, shunt surgery, MRI's and more
Sierra's Photo Album
I have been reading Rumi again, and find myself repeating in my head.
What is enlightenment? It is joy when sudden disappointment comes.
I feel comfort through my core at these words. Their meaning washes over me in waves. I grasp at the nuances, the implications. My daughter is laughing inside. Yes, she seems to say, now you get it.
Dear Diary, no date
I'm trapped here in a million different thoughts and emotions. Suffocated by the finality of death and the fragility of life. Doctors give no answers and take days and weeks to even sit down and talk. Shouldn't we take drastic action? Will no one save this baby? I should feel happy -- like one who knows she's carrying the bud of life. But I see my belly growing and become heavy with sorrow -- like carrying death. I throw up my fears in the toilet. Lasagna stares back at me half digested. I'm too scared to breathe now. Every hope only breaks my heart into smaller pieces. I feel her tiny movements and love each one. Then I'm afraid that it will be the last. And I'm more angry than I can admit. Because I'm afraid that if I admit this anger into being my whole little world will come crashing down. So they say, "only send good energy to the baby" and "don't worry". I hate their avoidance of the pain. Yet... when it's just the two of us in this body, I am quiet, listening to her, knowing that she alone has the answer.
Do you believe in faith? Does absolute devotion to an idea have power? I look around and I see it does in every aspect shape existence. We all agree to reality --thus it is. Here I am trying to create a new truth inside my own body. Doctors say her brain is not right and I see pictures in black and white, sound on paper, and agree with this as evidence. But then I come home and try with all my heart to change that reality. I pray. I talk to my daughter inside me. I believe in her mutability and her divinity. I want to eat the right thing, give her what she needs to grow strong. I try to accept that her differences make her different, not wrong. Plagued by guilt I fear what action I took to bring this upon her. I must have angered the gods. Now my life is cast in guilt, shame, remorse for the charmic backlash of past transgressions. I cry a bucket of tears that nobody sees. Then I stop, I listen, I feel. She is there multiplying cell by cell. She is becoming. What that is I do not pretend to know. How can a sound wave thrown out at her reveal her truth? Will she not come soon and show herself to us? I long for her being to be alive. Whatever form she takes I love this one that is part of me.
Hydrocephalus
Yahoo! Support Groups
Dandy-Walker Malformation, Variant etc.
Since birth Sierra's diagnosis is has not been determined, but may not be DWV but simply a Posterior Fossa Arachnoid Cyst