Independence

Yesterday, Jackson asked a question that stopped me in my tracks. While in the car with me and Grace, he asked if Gracie would have to live with me forever. I froze — Grace did, too. I carefully chose my response. “Well, buddy, Grace is certainly welcome to live with me forever. I love her and she is always welcome with me.” Then, after a second, “You are always welcome to live with me, too, if you want to. But when you grow up if you want to live somewhere else, that’s okay too.”

Holy crap! What a question! That caught me off guard. I knew what he was really asking, and I think Grace did also. I hope that she will be able to be independent as an adult. It’s hard to say; there are people who are blind and do very well and there are people who don’t feel pain and do very well. The problem is, there really aren’t other people who are blind and don’t feel pain. It’s a very rare combination, and the ones that exist are blind by injury and not genetics.

When Grace was first diagnosed with retinitis pigmentosa, the thing I mourned most was the loss of her future independence. How would she ever find her injuries if she couldn’t see them? Especially since her sensation is so poor; she may not be able to feel subtle changes on her skin. Now, though, what I know is that Grace’s biggest strengths are her intelligence and determination. She does not like to be told “no.” She never has — even as a little baby, she would burst into tears if anyone scolded her or told her no. This turned out to be an asset for her — and I think it will help her find independence someday, too.

This morning when Grace first got up, I talked to her a little more about Jackson’s question. I told her that she could do anything she wanted when she grew up — she could live alone if she wanted — but she would always have a place in my home because she is my family and I love her.

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