I just read this article on the Huffington Post and wanted to share it. I think this is one of the reasons I have such a love/hate relationship with fragile x:
If you could somehow erase the condition, would you be left with the same child? And if you could avoid having a child with that condition, would you? Should everyone? Would there be something lost to the world if — many would use the word “when” — we can screen many in advance and reverse others after birth?
Read the entire article: Does Illness Define A Child?
I think this is particularly hard to answer given how many similarities our children share…how many of the “characteristics” of fragile x are the things we love in our kids…their humor, their often (but not always!) sweet temperaments, their ability to surprise us over and over, etc.
Would Monkey be Monkey without fragile X? If I could free him from some of the harder parts would I want to “cure” him entirely, potentially at the risk of losing parts of his personality? I don’t seem to have an answer that doesn’t come with a “but.”
What do you think? (All opinions and experiences are welcome, anonymous comments are enabled if you don’t feel safe sharing.)
Hard question !
I know. One of the first thoughts I had when my boys were diagnosed was one of defiance. I was not going to let Fragile X be their whole lives.
It kind of takes over everything, though, doesn’t it?
I wish we could stick a pin in Fragile X, and put it aside for a bit.
And I wonder too, how many wonderful kids won’t ever be born because their parents know they could have Fragile X? Or for that matter, how many Down Syndrome babies are already missing from the world because we can screen for it? Is the world a better place, because there are fewer people with disabilities? Have the medical and science fields saved themselves tons of money and time, because there are fewer people with genetic problems to work on?
I think, clearly, not.
Great post M, great comments. The FX dx defines a lot of my son & our lives. Some of it is WONDERFUL and I wouldn’t want to lose it (his soft kissable skin, my amazing FX family…). BUT… I would like some of the negatives to go away! Hmmm, an excellent question if I’m ever given the chance to ‘cure’ him. Thanks for the post!
Umma, such a great point, and such a heart-breaking question….
Finley has been the best teacher to me made me open my mind in all kinds of ways I’m a much better person,friend,and mom for having a son like him . “Change” not him no never ! The Change
of opinion is what I like to see after people meet him and find something in him that makes them less judgmental and they see perfection comes in many different ways 🙂
I read that at 8am and it hurt my head. I read that at 10pm and it hurt my head. I have tried to write 4 different replies and I erased them all. I will say that I have no fucking idea. 😉