Ok, I need to vent. My mother just stopped by & really got under my skin! Over the Holiday weekend we had a FAMILY BBQ. I had the postcards from CARES to send to our Governor about increasing newborn screening to include CAH(as well as MANY others) . I handed them out to FAMILY. I am capitalizing family b/c it’s not like I walked up to some random person, these are the people who love & care for our daughters. Today my mother came to tell me she wishes I wouldn’t tell everyone about our daughters "secret" Yep...that was her word! When I pressed her on it, she felt like I am trying to make my daughter the"poster child" for CAH & how would I like it if everyone knew that I had ambiguous genitalia. What? Hello....this is about the disorder, not some external skin development issues! I have told her on numerous occasions that I am thankful that she was born with an external "red flag" otherwise we would have gone home & she would have gotten so sick! THis way she was on medication by day 3 & we never had to go through the fear that other parents do. THe thing that gets me even more, my sister agrees with my mom. What, do they want her growing up in a bubble? that we call her medication "vitamins" and whisper about the "Horrible Thing" she has? UUUGGGGHHHHHH. I know they love her, but I am her mom & I am not an idiot. She just made me feel like she thinks she knows better & that I walk around with a sign.."Hello, my youngest child has SWCAH & was born with a genital issue...wanna see?" All I asked was for support to increase our newborn screening...half the family doen’t even KNOW about the enlarged clitoris & such.. THe other half know b/c they were in the delivery room!
Ok...deep breath...in throught the nose, out through the mouith..take a paxil...and ....better now
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Jessica