Wednesday, March 4, 2009

Quinn Island

I shared Welcome to Holland with all of you, but there is another analogy that I would like to make to describe my experience more fully. To me, having a very young child with a developmental disability is like being on an island. It is a beautiful, calm place of peace. When you are on the island, alone with your child, everything is so clear and calm. As you hold and look into the eyes of your child, it is just love that pours over you. It is the best feeling in the world. You just enjoy the beauty of the place where you are. You know your exerience is unique and you really value it. But, unfortunately, you are never allowed to stay that way. You have periodic outsiders from the mainland who come along who tell you all about the mainland – reminding you of what you are missing by being on this island. They keep reminding you that your experience will be different from others through their direct questioning of where your child is in developmental milestones. Your heart goes to the mainland – you really wish you could travel there and experience life there, see how it is different, but you fully know that you just can’t ever go there. It just isn't a possibility. You know your child will be different than the norm - there is no getting around that no matter what you try. Your heart aches, and you just want to go back to being alone on the island without a care for the mainland.

In addition, on this island you have periodic thoughts about the future. Worries about what it will be like as you stay on this island longer and longer. Worries about what your child will do in the future. What will her functioning be? What she can and can’t do? She probably won't be able to live the exact life I have. Certain things will probably just not be a possibility. It all depends upon her functioning which is just a big question-mark at this phase. Anything can trigger these thoughts, things that the average person would never even think about will send you in this tailspin. To you, it is like you just want to deny the future and only think about the moment you are in – this is the only thing that brings you comfort and peace. You desperately want to just stay on the island and the beautiful moment that you are in, but periodically all these forces just seem to work against you.


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