By Kaci Goodrich Uipi
Sometimes I feel like maybe I'm a little too harsh on my blog. After all, I have mentioned that there are some ugly babies out there, and that pregnant women are annoying to me. If any of you are offended by this, I will tell you that I, myself was a really ugly baby. (Hey, I'm still not that great-looking.) And as far as all you pregnant people go--well, you know who you are, and YES--you can be annoying! (Yeah, maybe I was one of them, but now I know better. Way better.)
So if you haven't gasped enough while reading my blog lately, I will make you gasp again. I will ask a question, but this time directly to my family--WHAT IS WRONG WITH YOU PEOPLE??
How come none of my family will be tested for CGD? Is it because they think that "I'm the only one who has bad things happen to them?" Or is it because they really think they aren't carriers? Or is it because they are all in denial? Then there's my mom who completely, utterly, absolutely, REFUSES to be tested. Wow, Mom, how bad could it be? If you knew you were a carrier, would you feel guilty for Joshua's death? If my mom was tested and was negative, then all of my sisters wouldn't have to waste their time being tested.
Okay, so 1 of my 3 sisters did get the test done... but ONLY because she was pregnant with a boy. When the results came back, she acted like it wasn't a big deal because, "of course I wouldn't be a carrier, I mean, bad stuff only happens to Kaci and Salesi, one of MY kid's isn't going to die..." (Okay, so my sister didn't actually say those words, but that's how it felt to me, anyway.)
Of course no one thinks bad stuff is going to happen to them. No one thinks they could possibly lose one of their kids. That kind of stuff only happens to other people, right?
Okay, so maybe you are thinking I should tell this to my family in person. Oh, I have. Many times. I try to convince them that having a CGD baby is serious; That it's a kind of lifestyle that they might not want to have; That just because they know before the baby is born (unlike me), does not mean the baby won't have problems it's whole life, and certainly doesn't mean the child will live a long life.
Then again, why be tested at all when your child could be born with so many other problems, right? Well, wouldn't you like to have one less problem to deal with? (Especially a very serious, chronic disease that could be fatal.)
Then there's the "percentage issue". Are you going to tell me to "go ahead and take the risk, because there's still a 75% chance my baby won't have it!" What about the other 25% chance that my girl could be a carrier and have to face what I'm facing when she is ready to have kids?
The bottom line is this: Numbers don't mean much to me. Joshua was born with something that only 1 in a million people have. Why wouldn't it happen again?