Shhh…It’s a SecretI can’t allow myself to think and feel the reality of what it means to have a disabled child. I can’t allow myself to stop and listen to my heart break as the dreams I had for her before she was born float from my grasp daily. I can’t allow myself to let anyone see that I am not as strong as I pretend to be when dealing with the dailies of our lives. I can’t allow myself to believe that the only job she will have is sweeping up trash. I can’t allow myself to stop fighting for one minute because the world will believe that I too have given up on her. I can’t allow myself these thoughts.
The thought that this child could have died before she was even born. The thought that when people see her they don’t see a child, but a child born broken with too many chromosomes and too many doctors and too many problems. The thought that she will never leave my home. The thought that I will always have a child with the emotional IQ of a six or seven year old. The thought that if I die her life would never be the same because others might not be able to see her potential. The thought that she will be the butt of someone’s joke and not even be aware. Instead smile at them because they are smiling too. The thought that her three year old sister already talks circles around her and she is half of Emma’s age. The thought that people see a happy Downs kid instead of a child who chooses to smile in the face of adversity when she should be whimpering at the task ahead.
I want people to realize that each day and each night I face the reality of my world of the disabled. Sometimes it crushes my heart and soul and I can hardly breathe. Often times it looks like I’m angry, it looks like I’m in pain, it looks like I’m afraid, but often it is the overwhelmingnes off it all. Often times I think will she ever read? Will she always refuse to write? Will she have friends even when she pushes them and hits them? Do teachers and other parents understand that each time I talk with her about her misbehavior I wonder if she truly understands because she can’t tell me if she does? Do I even know how to be a parent? I didn’t expect parenthood to be easy, but I never thought it would be this hard.
I wonder if other parents feel as I do. I wonder if they too fear that their child will be ostracized and made fun of because her eyes are shaped differently or her gate is jumpy or her speech is slurred? I wonder if I am alone with worry about her future? Do they wonder if she will be able to cook for herself or live alone or drive a car or find the one true friend of a lifetime? Do other parents grieve when their kid can’t ride a bike or swim or refuses to eat because she can’t stand the texture of meat? Do other parents want to cry at back to school night when you realize she will not accomplish ¼ of the objectives for first grade?I can’t allow the fears, the worries, the what ifs to consume me. I can’t allow myself to stop and pause. If I did my heart would break. Instead I put up my walls, I walk proud and strong even if it is a façade. I do not show my shaking hands, my weary heart, my tear stained cheeks. If I did, what would those teachers say? I don’t want comfort. I don’t want pity. I just want my kid to be normal. The problem is I am that teacher. I am her. I know normal doesn’t exist, but I would give anything to have it.
My job as an educator is to have all the answers on how to properly educate a child, yet, I often feel at a loss as to how to help my own child learn. I know the data, research, and best practices. I can recite them in my sleep and teach them daily, but I am faced with the realization that I fear nothing will work with my kid. I fear that she will be a statistic. A number. Someone who exists, but does not contribute to society. Some of my fears are rational…most are irrational, but yet they are there in the back of my mind when I read every email, answer and return every phone call, attend a parent teacher conference, look into the eyes of her teacher and lie when I say I think it’s going to be the best year. Because when it comes down to it I am just a mother. A mother of a fantastic kid who happens to live with a disability. The fears don’t win everyday. So please when I come in and act normal, crazy, sad, happy or just funny understand these fears are also there. We just don’t tell.