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.
Gregg Bissonette wishes Quinn Merry Christmas
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Here is the link!
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10 months ago
4 comments:
With having 2 kids with fxs I'm torn on a cure. If it happened I would probably let my daughter do it because she is so mild. But my son has had it for 12 years. It is who he is. I don't think I would let him do it at this stage in his life because he has lost so much precious time developing. If that makes any sense. He has an amazing quality of life just being Matty. I don't want to take that away from him in order for him to live up to everyone elses ideals. Ya know!?
I hadn't seen this book before, it looks very interesting.
I wish I could address the cure aspect on my blog but my opinion is greatly impacted on the other members of my family with FX and I don't want to hurt anyone's feelings. :-(
This was a really tough one with me, and for a while i was second guessing everything i said.. i would have a thought like, maybe holly will invent something that does XYZ and then I would bite my tounge before saying wondering if I shouldn;t because it was a silly thought if she doesn;t have the ability, but then being mad at myself, because what if she does, i don;t want to have such low expectations either that I don't encourage her to be all that she can be. So this has definately turned my espectations upside down and really made me look at things in a new way.
It's hard for me to even fathom that there will be a "cure." I just think of these new drug treatments as treatments similar to the ones already available; they help the symptoms, but cure?? I don't know. If there is indeed something out there that will have a significant impact on their learning capabilities, with very minimal risks and side effects, then I would definitely consider it for the boys. BUT, "risks and side effects" is a HUGE issue.
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