I haven't read this book or even ordered it. But I saw it awhile ago while searching for books about Fragile X and disabilities in general, and the title, You Will Dream New Dreams, stuck with me.
I don't think I realized I had dreams for my child, because I thought of myself as a very enlightened parent who would not pressure my child to be a straight-A student, a doctor, or a lawyer. But then when we got Quinn's diagnosis, and I was so sad, I realized that some of what I was sad about was indeed the loss of my hopes for his future. So I had dreams, hopes, and/or expectations, but just wasn't aware of them.
Anyway, I think I must be on my way to acceptance, at least for now (I imagine I'll be cycling through the stages again, maybe even tomorrow) because while driving the other day, I realized I was beginning to make new dreams for Quinn. Here are a few of them:
1. To have a happy childhood, full of rich, fun experiences and lots of love. To get to be a little boy first, and a client/student/kid with special needs second (or third or fourth).
2. To find the activities and relationships that bring him pleasure and fulfillment. To have many opportunities to do these activities and to participate in these relationships.
3. To reach his full potential, whatever that may be.
4. To be loved, healthy, and safe throughout his life.
Interestingly, a cure is not really part of these dreams. Though I'm certainly open to thinking about a cure, and excited about the possibilities, I have some ambivalence about it (shared by at least one other mom of a kid with fxs), which will likely be the subject of another post. For now, given that there isn't a cure available, I'd rather focus on the dreams that make sense for our little guy just as he is right now.
Just Brody - It is amazing to see the progress that he has made over the last two years. While we were there last visit, he put on his shoes and went to the restroom......
1 month ago