I knew the day would come, and now it has. John and I have had many heartfelt talks about how we will handle it. What will we say? We have the challenge of trying to strike a balance between acknowledging her pain and the fact that life hasn't exactly handed Eden the easiest set of circumstances, but also remaining positive and helping her to realize all of her wonderful attributes and pointing out the many things that she does well.
We have always talked frankly to her about her disabilities. She knows, as well as a 6-year-old can, that she has CP and that she is deaf, and that these are a result of her being born way too early. We have always involved her in equipment decisions and have talked about the importance of stretching, PT, and exercise. She has always been pretty upbeat and excited about trouble-shooting new activities to see how she can participate. And up until now, she has always just been pretty matter-of-fact about all of it.
I think that the Conductive Education summer camp really stirred up some realizations and got her thinking about it a lot more. I don't know if she went into it thinking that she was going to learn to walk while she was there (which she did not), or if it had to do more with Holland being able to do gymnastics camp (which Eden can not), or if it was just being around so many other kids with various levels of disability (some with more limited ability than her), that brought on a greater or deeper understanding of her own limitations.
Whatever it was, there were a couple of occasions during the camp that she mentioned that she wished she could walk so she could go to camp with Holland. Since we have been home she has mentioned it a couple of times as well. "I wish I could walk."
As much as I tried to prepare myself for these words, I gotta say that each time it still feels a little bit like a punch in the gut. It kinda takes my breath away and breaks my heart a little bit more.
I still feel tongue-tied and a little bit unsure of myself and the best way to handle it. What should I say? What do I say?
I generally say something along the lines of, "Oh Honey, I wish walking wasn't so hard for you too. But you know, everybody has different things that they are good at. You are very lucky because you are a kind and smart girl, with a family who loves you very much just the way you are. You work really hard and you are able to do so many things. You can see. You can hear with your cochlear implant. You can talk and eat. You can crawl all around the house and are a great driver in your power chair. You have a great imagination when you play and you already know how to read and you haven't even started kindergarten yet! You are an amazing little girl who can do so many things. So, let's just keep working on your walking and with practice I am sure it will get better and better. But even if you never walk, I will always love you exactly the way you are."
Sometimes she smiles at me, gives me a hug, and says, "I love you too Mom." Other times she gets a little sad and teary, and gets really quiet for a while.
Every day I just hope that I am doing a good enough job at this.