Saturday, September 10, 2011


I have been working on this post for a while. It has been a little hard for me to articulate, but here's the bottom line...

I project.

If I look closely, I am constantly projecting on Aviana.

Constantly, constantly, constantly.

I don't mean to, I just do.

I am trying to stop.

When I look at a fish in a bowl, why do I not project on it?

Because a fish is a fish, and a fish does what a fish is supposed to do.

When I look at Rainey, why don't I project on her? She doesn't talk.

Because a dog is a dog, and a dog does what a dog is supposed to do.

So, it makes perfect sense as to why I project on Aviana.

She is a kid, why do I project on her?

Because a kid is a kid, and Aviana does not do what a kid is supposed to do.

I inadvertently project on her. I don't want to. I don't mean to. I just do. It is hard to wrap your mind around something that is not as it should be. Pretty much everyone else, at slightly varying degrees, are as they should be. I am. You are. Your kid probably is. Very few, in the grand scheme of things, are not that 'typical' way. Very few cannot support the weight of their own head. Very few can't speak one single word. Very few can't reach for an object. Very few cannot move from their back. Very few are in diapers at 5 years old. Very few cannot smile or laugh. Very few have 2000/1000 vision on top of all the rest. These things make it very hard to accept or come to terms.

When I look at Aviana, I am looking at her through my eyes. This is very dangerous. I am looking at her with the very same eyes who have experienced a truly amazing life filled with: holidays, birthdays, running through the forest, baking cookies, building forts, running down the hill and spending the day floating around on a raft with my cousin, best friends, crank calls, slumber parties, boyfriends, driving for the very first time, becoming more independent, working, graduation, the whole college experience, setting my own goals and achieving them, finding a good man, properly expressing my wants and needs while listening to his too, marrying him, buying a house together, decorating the house, trips with just the two of us, wakeboarding, snowboarding, adopting a child, etc, etc.

The list goes on and on. Because Aviana is the way she is, she will probably never be able to experience the majority of these things. We also, will never experience these very exciting things through her. Don't get me wrong, we will have experiences with her, but I am wondering how to learn to see through her eyes, instead of my own. The two are vastly different, a world apart, if you will.

At first I didn't really realize I was doing it. It became pretty clear after the first year, and now I am pretty cognizant. I have been trying desperately to stop myself. I am creating my own unhappiness, because I do think Aviana is just fine. She is content for majority of the day. She doesn't seem to get bored. She's never in pain. She is happy when we are loving her and holding her. She is good to go. It is me that is not. It is me that creates unnecessary havoc.

The Beatles famously sang, "All You Need is Love." And I always believed it, and still do. But now I am second guessing myself, at my core and when it really comes down to it, do I really believe that is all you need? My mind says yes, but some of my actions say no....

If everything seems to be fine by her, why can't that be enough? Sometimes I feel it is, but most times I feel it will never be enough.


  1. fantastic and insightful post. i don't know how it felt to you when you were writing it, but as a reader it feels like one of those breakthroughs in shifting perspective that shows you that aviana might not be your typical kid, but you will take insights from raising her that may be far more profound than the typical parent can access. thank you for sharing this, it's something i think all of us can benefit from.

  2. To me, I think this is the road to acceptance. It's the reverse of what we expect as parents, but I think that maybe in the end she will have taught you as much or more than you taught her.

    I think of many of the parents that I started working with when their little guys were 3 and the dreams they had for them then. By 13, they were more realistic about their kids which had to be extremely hard in many ways, but maybe easier in others. I remember one mom, who said to me as her son went to middle school, that the transitions were the hardest.

    I learned so much from "my parents" and I've learned so much from you. I hope someday you put this into a book so that you have an opportunity to help other parents because you certainly could.


  3. You want her to ahve all the experiances that you had that are good memories and normal experiances. I would want the same thing for her, thats just the norm. I think it sounds pretty normal to me.

  4. My heart goes out to you. I know how hard it is to come to this point in understanding and acceptance, but for me it was the most freeing realization for me. Once I was able to look at life through Blake's eyes, my goals for him changed. As you said, I just wanted him to be comfy, warm, to feel love, to hear beautiful sounds and to see beautiful sights. With this acceptance I was free to love Blake for exactly who he was and I didn't try to make him be what I wanted for his life. I hope you will find peace in your revelation.

  5. I really do understand. In our case, I have a projection of EXACTLY what Cici would be if this hadn't happened - in her identical twin. As time has gone on, I've just thought of them more as Cici and Penny rather than what I think they should be doing. It's very very hard, though to wonder "if."

  6. It is really hard not to do this. I've heard from many people with CP: "Don't pity me!"

    Really? Cause I want pity. Pity me.

    How can I not pity my son when he cries because he can't move toward a toy he wants or put his thumb in his mouth or a million other things he's tried and failed to do while his twin brother zooms around manifesting his destiny?

    But you're right. They are much more OK than we are and it's more us who need to change instead of them.