Thank you so, so much for your replies, even though they were not explicitly meant for me. I learned about this disorder on January 2nd of this year when my as of yet unborn daughter was first tested (diagnosis confirmed as SWCAH a week before she was born). She's now 15 weeks old. In the first month of her life, I was equal parts devastated about her disorder, terrified of all the horrible possibilities I had been researching, and worried that her life--and by extension mine--would never get to be anything like "normal."
I emailed with a few women from this board who were kind enough to reach out to me, and both assured me that in time this, too, becomes normal. I'm shocked to say that only a bit over three months in, these mothers were right! I've actually had days where the term "CAH" didn't even cross my mind. Even when giving her meds, I just didn't think about it because it's clear that she really is fine. She's beautiful, sweet, growing well, sleeping well, eating well, everything that a new parent could hope for out of their child. She has a team of doctors who are working in tandem with me to make sure that she stays as healthy as possible, and so far she has. I'm sure that we will have scares and really horrible days--and probably many of them will have nothing to do with her CAH. I can say from experience, as a mother of a thirteen year old boy who is unaffected by CAH, we've had many! But we've had far more wonderful days with him, as I am now confident that we will have with our new daughter as well.
The key, I think, is realizing exactly what Laura, Rick, and anon pointed out--people do not come to a support board because they are feeling good about things. And no one will have every possible side effect of the disorder. If your eleven year old is doing great now, isn't it probable that, despite the bumps in the road that come with growing up (disorder or not), she will continue to great?
I came here today because my daughter is having her surgery in the end of May and I wanted to read about people's experiences, even though I knew that it might be a bit scary. I want to know what I'm in for so that I can adjust my current paradigm if need be. Knowing the worst really helps so that you're either prepared for that, or completely heartened by the fact that what actually happened feels good in comparison. I have to say, I feel a bit better after reading the board and am hugely reassured by the fact that this surgery is taking place now after the hard lessons of the last 20-30 years have already been learned. How fortunate we are to have the experiences of so many people who post here!
I have learned so much from this child in these last few months. Mostly, I've learned to be thankful.
