Most of the time, I am able to stay safe and comfortable in my world. Inside the walls of my home, surrounded by friends and family that are in my happy, positive bubble. Life is good- so good. In the here and now, its perfect.
Fiona is the center of attention where ever we go. She is adorable- you can't get enough of her. People vie to hold her, they fight for her attention and beg for her smile. Her tininess is a positive. Her low muscle tone- a cuteness factor. Few look at her and see major delays. No, she is a baby, who is doing baby things.
We give her the world. No dream will be too big. And I dream big for her.
But then there is another reality. Brought to its raw light by a pre-teen today. That no matter how amazing Fiona is and will be, she will be seen as different. This girl, all well meaning, started talking to me about her middle school's special ed class. But in her intention to tell me how good of a program it was, she also told me how she "has a hard time understanding them, because, well, they talk funny" and that they are in their elective classes but there was a clear distinction that "they" were not really included with the normal kids, by the normal kids, in these classes. Her speech was all "we" and "them" and numerous times kept saying how sorry she felt for them.
My head was reeling. Was she really saying of all this? To me? And she thought this was a good thing? That she was being nice? Did she really tell me that one of the kids with special needs said something, mispronounced it, and now its an inside joke with her and her girlfriend? This is a good girl, a sweet girl and nice girl. I wanted to tell her how offensive she was being. That she was completely ignorant about these kids. And being nice isn't smiling at them, but actually befriending them.
Instead, I bit my tongue until I could compose my thoughts. I told her that there is no need to feel sorry for them. That although all of their differences seem horrible to us, that is all they know. Its their life, and to them, its good. I told her about Dr. Skotko's research, and how 99 percent of people he surveyed with Down syndrome said they not only loved who they are, but they loved how they look. I showed her the comparison that with the general, normal, population you would not get such a high percentage that loved themselves. There was so much else I wanted to tell her and show her, but I hope the little I said lit a light for her. She certainly brightened a light for me that I try to keep dim.
I hate thinking about the reality of Fiona's future. That no matter how much she achieves, she will be treated different by most people. As John Wayne once said, "Life is hard. Its even harder if your stupid". Oh, the painful truth in that. (The context of that quote I do not know, but I read it in its most literal meaning). I have seen the hurtful comments about how us mom's with young kids with Down syndrome need to stop painting rainbows on something that isn't pretty. That we don't really know what we have gotten into. I want to make a clear distinction. I know. But that doesn't mean I am not going to celebrate life now. While I cannot avoid thinking about the future, we do our best to take each day at a time, and enjoy it to its fullest. Fiona will certainly face many difficulties in her life time, that I am certain, but that's just a sliver of her life pie. If I have anything to do with it (and, oh, I do) she has a lot more rainbows in her future then rainstorms.
Protectiveness is a mothers natural instinct. I so wish I could protect her from the halls of a middle school- probably America's most judgmental place. I wish I could protect her from pity and ridicule and the figurative boxes she may never fit in. To live is to suffer. Joy is pain. Her life will be different and she will be treated differently. Her life will still be beautiful and full of love.
Tomorrow morning, I will pick up my smiling, blue eyed baby out of her crib where she will be waiting for me standing and holding on to the rails, and I will be back in my world. We will play and enjoy Nana being in town and those rainstorms will once again go back in hiding. In this way, normal and different will always be intertwined for me. “There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”
― Albert Einstein