What an interesting question. I have so many directions I can go. Do I talk about the times when Evie was growing up and she couldn't talk, nor walk but "looked" old enough to do that? People at the playground, in malls, and out and about would ask a probing question like, "How old is she?" That would just open a can of worms that they weren't ready to open, because I would have to respond with an age that they were not prepared to hear. Then we would have the uncomfortable silence of me thinking, "So...do I defend us and say, 'she has a rare genetic disorder that causes blindness, development delays and often cancer'?" And the other person is thinking, "There must be something wrong, but how do I find out what?"
Ultimately, I think the most difficult stigma for me to break concerning my daughter was my own stigma against myself as her mother. I honestly felt I was a terrible mother for the first six years of her life. I was reading books on Sensory Processing Disorder and going to conferences for parents of children who were blind and visually impaired. I was volunteering for the International WAGR Syndrome Association (www.wagr.org) and learning from other's experiences with their kids. Yet, I just didn't feel I was getting anywhere with my DAUGHTER.
I realize, in retrospect, that I wasn't a bad mother, I just never had enough time with Evie to even begin to KNOW who she was. The more time I spend with her, the more I learn "what makes her tick," wow...I just fall in love with my role as mother over and over again; and I fall in love with Evie over and over again.
So, really, what I've learned in these past few years since I've been blessed with summers off work with Evie, and afternoon walks home from school together is that I had created a stigma against myself. I, and I alone, was judging myself and holding myself in a confining box of "failing mother." Just because a mother can't stop her child's different behaviors or doesn't understand the different behaviors doesn't mean she's a bad mother; it just means she might have a curious little creature who may take a little longer to figure out. A good mother continues to love, and learn and try knew things.
We had a moment a few weeks back that literally had me on my knees...sort of. I was helping Evie get her leggings on...those can be tough, you get your toes caught in the ankle of the pant leg and it's hard to shake free! I had done that thing where you roll it up in your hands first, like women's hosiery, and then I slid it over her ankle. I was kneeling in front of Evie and she had her arms around my neck. I saw her tense up and she said, "Why did you DO THAT?" I knew what she was talking about, but I wanted to respond calmly for more time to delay, "Do what?" It had bothered her that I rolled and ruffled the pants leg...don't ask me why, but it's a sensory thing. Evie then tightened her grip on my neck and pulled me close to her, she had her mouth next to my cheek, and I've been bit like that before, so I was scared.
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She had never said that before. I felt tears welling in my eyes. I said, "I know, Honey, but I was really afraid you were going to bite me." She said, "No, no, I don't want to do that."
Wow. She had never said that before either. "I know, Honey, I know you don't. I'm so proud of you for stopping yourself. I'm so proud of you." I just didn't know how to express to her how MUCH that apology meant; let alone her admission that she had the urge to do something that she REALLY didn't want to do.
It breaks my heart to think of how hard that was for her. But that is just another step in getting to know my daughter better and better. Just another step toward making that old stigma, which exists only in my mind, disappear entirely.