I could be your neighbor, your co-worker, or your friend. I could live down the street, or across town. I get up and work every day, and come home every night. I go to church on Sundays, and talk about the weather with others. I drive safely, pay my bills on time and vote. You see me everywhere, and I seem to be just like you. But there is something you may not know about me. I am a member of an exclusive club. This is not a club any one wants join, but when they become members, they are members for life. It is not a club one can join by invitation, but by divine providence. You see, I have a child with a disability.
I have a child who was born with Spina Bifida. She was born over four years ago. My wife and I did not find out about the disability until the 35th week of her pregnancy. With all the stress this information brought, Grace was born five days later. At that time, I had been working with people with disabilities in one fashion or another for over eight years, but I never expected to be the parent of one. It took a couple of years for my father to realize that this was a lifelong issue. After every specialist appointment, he kept asking if she would be all right now. “No, dad, she will never be all right.”
I have two other children. They do not have disabilities (other than having me as a father). Grace is just like them. She laughs, cries, and loves, just like the other two. She eats, sleeps, plays, goes to school, and gets upset when things do not go her way, just like her brother and sister. She is also different. She has a personality all her own. She has red hair, blue eyes, and a smile that just melts hearts. She is also stubborn beyond reason. I am constantly amazed by her fierce determination to not give up, and her ability to make those around her forget she has a disability. Reality is never far away.
There are days when I sit and wonder why this happened. There are days I feel sorry for myself. But then I remember, I am not the one with the disability, she is. Mostly, I wonder how I will answer her questions as she grows older. How will I tell her she will never be just like other kids? How will I tell her that she will never go to the bathroom like other kids? How can I tell her she may never run like other children? With my other children, it was not a matter of if, but when. With Gracie, it’s different. Because of this, every milestone she reaches is a bit more significant, and the everyday accomplishments are met with a bittersweet smile. Other parents save their children’s first pair of shoes. We save her braces. Other parents look forward to not having to buy diapers. We look forward to Gracie being able to change hers by herself.
When we are out, I see the stares and hear the whispers. It’s okay to be curious. I am not offended. I would feel better if you just came up and asked your questions, and listen without judgment. Better yet, just ask Gracie. She can speak. Sometimes, more than she should. Through my years at work, I have seen the best and the worst society has to offer those who seem to be different. Now, it hits a bit closer to home. Yes, she is different. But all of us are different, aren’t we? It is just that her differences are a bit easier to see that our own. But even though our differences are far outweighed by the similarities, society seems to focus on the things that separate us instead of what binds us together.
I have no idea what the future holds for Gracie. Heck, I don’t know what tomorrow holds! All I know is that she is loved. I would like to be there the rest of her life to take care of her, but I cannot. She is being raised to be independent and determined. These are qualities I am sure will serve her well in her life, but can be a bit of a hassle for her mom and I right now. Sometimes, I want to fast forward 20 years to see how things turn out for her. I would love to be a fly on the wall at that time. Will there be medical advances that will allow her some level of freedom from her disability? Will society have changed to the extent where she is seen for who she is and not for her disability? I don’t know.
On second thought, I do not want to fast forward at all. I want to be part of all of her life, and I want to be there to cheer her accomplishments and dry her tears. I want what every other parent wants for his or her child: Happiness.