October 18, 2011

What Is Wrong With You People

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?


  1. Pregnant people annoy me sometimes too. What's really getting to me lately (and I haven't said this to my family) is that they are all wanting me to contribute to throwing my sister's GIRL baby shower. Just put me front and center of the show where i get to watch my sister get everything I've ever wanted. I also have school that night, which isn't a big deal if I miss it, but I'm afraid if I don't go and coo and fawn over all the girl stuff, I'm being a jerk. And if it becomes too much, I do NOT want people to ask "Where's Amy?" "Oh, she's crying in the bed room. It was too much for you." And have them feel all sorry for me and wish they could fix it when really they're just glad it's not happening to them.
    Whoa. Good to get that out. Venting session over.
    I agree. Your sisters should DEFINITELY get tested. Period.

  2. Pregnant people can annoy me sometimes! And i can say that I might annoy others when i am pregnant, but because I have lost 5 babies, I know not to rub it in to people that I am pregnant when they lost a baby. I have felt that pain and it is horrible. I am sorry your sisters won't get tested to find out if they are carriers. I got tested to see why I lost so many babies, and it was good to know, and how I can move forward. You can vent however you want on your blog, because remember this is YOUR BLOG and you can say whatever you want even if it might hurt peoples feelings. I have done it on my own blog a few times over now to my family. I don't put names down, but they know who they are that hurt me or won't listen to me. Keep doing what you are doing Kaci!! You are a wonderful person!!! Oh and I too think some babies are not so cute either!

  3. I shouldn't have to explain this to you on your blog, but I will anyway because you seem super upset.

    I have had two doctors and a midwife tell me that unless I plan on having more children and that child is a boy, then there is no reason for me to be tested. I have 3 seemingly healthy children. Despite this, I have called your doctor and geneticist to set up appointments to be tested. Both have failed to call me back. I also spoke with a geneticist when I was pregnant with Amelia who told me that I do not need to take the test unless I am pregnant with a boy.

    Like you mention here, Caitlin, who was tested, turns out to be negative and you get mad at her because she didn't act like it was a big enough deal! No one can win with you.

    Joshua's death is awful, but why do you need to make it worse by being a jerk to everyone who loves and cares about you? Why hate people for being happy? In the long run, this is not going to bring you joy. This will slowly turn you into a bitter old lady who no one wants to be around. It doesn't have to be this way.

    One more thing, you're not the only person who has bad things happen to you. Some bad things are more visible than others.

  4. Do you love being that "one." The "friend" that had something terrible happen to them. URGH, so annoying. I am confused doesn't your mom have to carry it for you to? I wish we had some numbers...percentages are lame but I feel like not knowing is even worse. I can't imagine one of my siblings being a carrier for something and not wanting to get tested.

  5. I still think of myself as that person. You know the one whose kid died. A year and half later and I still think of it that way. I'm sorry that your family won't get tested. I don't know how I would feel about that. We have not done any special testing with our new little one. Some ways I want to, i want to be prepared but then again I feel like I'm asking for trouble.

    Being angry is a part of this process. My sister in law and brother in law almost never ever mention Megan. They were the first people to walk into a room and grab her up and love on her but can't be troubled enough to mention her damn name. It makes me hate them. I hate that they are doing the same thing with Amanda now. Yet I also know that this is how some people de with grief so I try to keep my anger down but it is hard sometimes.


I have never deleted anyone's comment. (Not even the mean ones from my sisters.)