I have thought of a hundred things to write about this week. But what consumes me the most at this very minute is the longing I have to truly KNOW my little girl. When Avery was a baby, up until she was 14 months old or so, she was full of personality. She still is I suppose, though it is hard to decipher what is "autism" and what is "personality" at this point. She was full of light and wonder, and was so connected and involved with us every minute of her waking life. Over the past year or so, as she has become more and more disconnected, I have wrapped myself up in how to help her... how to treat her... how to bring her back.
Earlier this week a new show premiered called Autism x 6 about a family who have six children, all of whom fall somewhere on the Autism spectrum. If you have a child with Autism... don't watch it. For those of you who want to know more about the disorder, go right ahead. It was pretty devastating to me. To see their 6 year old non verbal daughter, still in diapers, dance around on the kitchen table, seeming completely unaware of her surroundings was more than I can handle right now. I am in the fight of my life, and I don't want the loss to look like that. From what I can tell however, this family knew little of early intervention. I know better than most how crucial early intervention is to the potential living in the hearts of our children. I wasn't born yesterday and I know there is no "cure" for Autism or Mastocytosis for that matter... but it doesn't mean I give up hope. I will keep trying, keep fighting, and keep searching to get my sweet daughter back. I love her to pieces just as she is... but I still miss her. I will miss her everyday, every minute of my life. She brought music to my soul. Though the melody has forever been changed, the song is still present. Still playing. Still growing and changing as time beats on.