Sweet Raspy Voice

It’s been so long since I have expressed my deepest feelings on paper.  Maybe it is the hectic environment in which I live, maybe it’s the denial that splashes my mind every morning, or the guilt that is seeded deep within me.  Uncertainty is my demon that gnaws away at my confidence to parent the way I need to.   It is difficult to grasp the concept of my everyday jealousy of ‘normal parents with normal children.’  Our life is anything but. Some days my life consists of washing smeared feces off the carpet and wall, or feeling numbing bites from my beautiful child who can’t verbally communicate her frustrations. It’s the constant monitoring of heavy duty drugs like clonazepam.  My Aspen started having seizures at 4 and a half months old. Every seizure I witnessed the pain and worry of what part of the brain was being damaged Every. Second. Of. Every. Seizure. My hope was being shattered. At first my Aspen hit every developmental milestone. She started talking and would put two words together.  Then at fifteen months of age, she regressed and she stopped talking.  My God, how I wish I would have video-taped her first words and sweet raspy voice when she would speak those words, I now only can hear them in my dreams.  I struggle when the world gives me glares and watch as she flops down on the concrete just to feel the texture on her face.  They have no clue.  Autism is messy, it is painful, it can shatter a whole family.  We rely on faith and taking things minute by minute.  Sometimes I have to remind myself to breathe and allow the tears to flow while I give my little Aspen a tight squeeze and allow her to hold me while I mourn the loss of a ‘normal’ life for her.

Introduction

I am a writer.  It cleanses my soul. It centers me.  I need this centering on my life more than ever. I will be posting about raw feelings that linger in my mind in hopes that sharing these will help me and others.

I am the mother of four beautiful little ladies.  The oldest compassionate and thoughtful.  The two middle girls are spunky, and active,  and my baby, she is sharp, fearless. She has been through more medical procedures in her two years than I have my whole life.  She is epileptic, and most recently diagnosed as autistic.  I always said she is my little puzzle.