In giving birth to my baby, my heart, became two hearts. One part of it was big and hard, and had lived through many trials and tribulations. It had seen death, survived illness, been “broken” by different loves, betrayed by family, ignored by friends, and still survived. The other part, was new, tiny, warm and soft. It had just begun its life, and I would be there with it. Every night that I slept with my baby in my arms, my heart beat, truly beat; as if for the first time. Every look that my little boy gave me, made the two hearts beat so rapidly, I thought I’d fly. But as time moved forward, my heart, the little, tiny, soft heart, began to slip outside. I tried to hold onto it, as tightly as I could, but the force was too strong. It left my body and became trapped in a new body. This little heart, lived in a world of his own. It began beating on its own time, and my two hearts became one every so often. Every time we would hug or he would smile, my heart would become whole and I would feel peace. A peace, that only a mother, who has loved unconditionally, would know. A love, so profound and deep, that poetry could never do it justice. Understanding it or putting it into words, is pointless. But if you were to look at the infinite of space, and the wonders of the stars, you can begin to grasp the tip of this love.
As my little heart has grown, I have tried to pry my way into my little heart’s world. Sometimes, I am allowed a glimpse of it, other times I am locked out. But always, I am there. I am there for the big discovers and the little discoveries. I am there for the tiny accomplishments, all the way to the awe inspiring ones. Through my heart’s tears, and laughter, through discovery and rejection, I have been there. But now, my little heart is going to have his world intruded upon by other people.
ABA is seen as a crucial part to a reduction of Autistic behavior. And so, he is going to receive it. He is going to learn how to eat on his own, put on his clothes, and interact with people around him. It is recommended that the parent be in the home, but not interact. This is to be, for 20+ hours a week. My little heart, inside his bubble, is now going to have new people trying to get in. And I am being pushed to another bubble, outside this one. I will be on the outside, looking in on his bubble. As the therapists try and get him to do all of these things, all of my little heart’s accomplishments, will be their’s. I will not be there. I will not see his first mouth movement, and probably won’t hear his first word. I won’t be the one to teach him how to use a fork (which is obvious by the progress I have made so far). Another, will see these and react to them. He will smile and flap his hands at his new accomplishments, and it will not be my eyes that meet his, it will be her’s. I will not be clapping and smiling from ear to ear at each new discovery, but instead, be sitting on the outside.
My little heart, which has been my true joy and accomplishment, may not be mine for much longer. A true and painful fact about Autism, is association. Little Man associates certain toys with certain therapists and certain activities with certain people. These new accomplishments and games and joys, will not be associated with me, but with someone else. My little heart will beat, for someone else. The little hugs that brought my two hearts together, will be less, as we will have less time together. My heart will only be whole, when someone else is no longer with my little heart. And sad to say, this will be a minority of the day. My one true joy, in being with my little heart, through good and bad, will no longer be mine. And this state of horror, that my heart is about to endure, is not for a week, or even a year, but for years to come. He will be in therapy for an unknown period of time.
Many moms would be happy for the “relief” or “child care” that many people see ABA as. But to me, my little boy is not my child, he is me. He is literally a piece of me, a piece that I can never let go. My greatest sadness comes from his pain, and my greatest joy comes from his. Without my little heart, I am not me. I am not whole. Having people take over my role as mother, is my darkest, deepest fear and sadness. I can’t begin to describe the pain I am in.
Some people say that we choose this life. That when we die, we choose where we are going to go next, who we are going to be, and what we will do. If this were true; the sad part is, I would still be me. I would still choose to be me, to be his mommy. I would choose to live in this ocean of sadness, because I don’t want to be anyone, if not my little heart’s mommy. I would choose the tears, the pain, the silence. I would choose to paint on the lipstick smile I will have to show everyone. Because if doing all of that means that I get to be his mommy, then I will do it. My big heart, that is missing a piece of it, will hold out for the moment my two hearts can be one, in a hug, just for a second.