ATTENTION MEDIA & OTHERS SEEKING INTERVIEWS!
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I will respect and understand if you feel you cannot respond to my posts. If they are upsetting to you, I wouldn't recommend it. I, by nature, am a very curious person. This type of dialogue isn't confrontational from my point of view. I simply like to get out of my own mind and question things I can only grasp second hand. I am sorry that you feel my questions are an indication of not understanding, or at least attempting to understand your stories. I think if we were talking in person, rather than on a message board, you would be able to better see and hear what my intentions are.
I'm not sure I can count the number of times I have stated I am very sorry for what you have had to endure in regards to the CAH community. This may sound like it is off the cuff, or not sincere, but I really do feel that adults with CAH must be the strongest people on the planet. To deal with a life threatening condition during a time the medical community didn't exactly understand it, and wanted to focus more on the "side effects," must have been very frustrating indeed.
I have also stated my appreciation for you and other adult (especially female) CAHers for sharing your stories. You have made a REAL difference in the way our daughters are treated. YOU have changed the standard of care for CAH!
That was all I was trying to say from the beginning. When parents are seeking advice for medical care for their children, it is somewhat important to use the current practice as the guide. I'm not saying your stories shouldn't be told, but just remember what you went through as a child has been changed...by you, and our daughters' doctors are changing their practices to make the CAH females of the future have different stories. I also understand your statement about parents seeking advice from the message board, and I personally agree. However, parents want to do what is best for their kids. When they have doctors telling them one thing, and another group of people saying that a surgery or exam is immoral or unethical, it gets to be rather confusing. The last thing a parent wants is to make an unethical choice for their child.
You are very pointed in telling me I cannot understand what it is like to be you or what you have gone through, although that is true to an extent, I feel that it works both ways. In your last post you stated:
"I don't think given the circumstances that you can grasp what I'm writing. There are things that I don't comprehend either and I know well enough that is just life. If I had had some need for them to get in there from an accident like your experience then I wouldn't feel like me either."
In one breath you said there are some things you can't understand and in the next you said if someone had been in your vagina because of an accident you wouldn't feel like you do. How could you know that? If I can't know how you feel, how can you know how others do?
Again, I do apologize for you feeling as though I am insensitive to your situation. That never was how I wanted to come across. If I don't hear from you I just want to end my post with another thank you. I do know you have helped make this something I can discuss with my daughter, and she can be proud of who she is. You have made her life better.
