Wednesday, February 11, 2015

Here's to redefining "perfect"

Maggie's TVI called today, telling me all about a symposium she had attended last week. It was on ONH and spoke a lot on the behavioral effects that tend to come with it. Most children with ONH are also on the autism spectrum or at least exhibit behaviors similar to those with autism.  Sigh. I have been thinking this for a long while, that Maggie may be autistic. Since I'd been thinking it, I told Laura it was fine, she wouldn't offend me and to please give me all the information she could find. After the wonderfully informative and overall positive conversation I called Brandon and broke down. 

Having someone else confirm those thoughts was gut wrenching. I know it's not changing anything. She's still the same person she was before someone said the "A".word. But to my mind came all the sigmas we attach to the word autism. All the judgments and stereotypes. All the intensely negative things. 

When I was pregnant with Maggie I had this picture of my daughter's future, bright and shiny and perfect. When I found out she was blind, that perfect future came crashing down around me. She would never be able to do all those things I wanted her to experience. She would forever be dependant on other people. Slowly I put the picture back together. It wasn't ruined, it was just a little different and spattered with a few more difficulties than the "normal" life I had dreamed for her. She would still be able to have amazing experiences, and she would still live a full and beautiful life. 

Today felt the same. I had my pieced-back-together picture of Maggie's brilliant, fabulous future, but now she's got behavioral issues that tear my picture apart.  

I thank God for Brandon. He's so stable and rational. He knows how to calm my fears. Nothing is different from this morning. Maggie is still stubborn and has some quirks. She's still got that same dazzling smile and sense of humor. She still has an amazing, marvelous future ahead of her. Now that we have an idea of where to head, Brandon and I and Maggie's teachers are going to do a lot of research. 

I got off the phone with Brandon and listened to an NPR podcast (Invisibilia-How to Become Batman) on how our expectations can effect those we interact with. The main focus was on a man, Daniel Kish, that learned how to echolocate to compensate for his blindness. He grew up with few restrictions and his mother felt that if he didn't experience the falls and bruises he wouldn't learn or grow. They explained through the episode how sighted people disable the blind with their help. By having the expectation that "a blind person can't do that" we take away their opportunity to see if they can. 

How do you know I know if Maggie can or cannot do something? I don't. I have to let her experience things on her own, and teach her how to do things on her own. I cannot lead her everywhere and bring her everything she needs. She's already so independent, it honestly makes me crazy. She wants to do things by herself and will NOT let anyone help her. I love it, and hate it. I know that the mentality will help her go far. She can do anything.


  1. I love you, Demarae. You are an amazing mother and I greatly look up to your parenting abilities. And that little Maggie is so so so special in the very best ways. I think we all have to redefine perfect at least a few times in this life. We'll all get there in the end :)

  2. Your post reminded me of this scripture:

    John 9:1-3
    And as Jesus passed by, he saw a man which was blind from his birth.
    And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind?
    Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.

    "that the works of God should be made manifest." I think that is true for Maggie, in many ways, probably even more than you know.