April 12, 2011

Yeah It Sucks

By Kaci Goodrich Uipi

I got my tests results back. The doctor wanted me to come in so she could tell me the results in person. That meant something wasn't good. I was right. The blood work came back positive. I'm a carrier of CGD. This means every time I get pregnant, there is a 25 percent chance my baby will be born with Chronic Granulomatous Disease. This is what Joshua died from. To be more specific, every boy I give birth to will have a 50 percent chance of having this disease. To be blunt: I need to have all girls.

How do I ensure that I will only have girls? Well there is in vitro, which could guarantee me a girl or even a healthy boy, but as we all know, it is very costly. There are also many natural techniques one can do to try to have a baby girl, but I'm not sure if I believe these actually work.

Many people ask me when I'm going to try for another baby. Well now you know one of the many, many things I have to consider before I'm ready. And like my friend Chelsea said regarding the matter, "It's not like Joshua was a pet goldfish or something!"

Misconception of the ungrieving world: "Kaci will feel all better when she has another baby to hold, and take care of..." I don't have any idea how I will feel when and if I have another baby because I don't know the future. I will always be grieving my son's loss in some way or another, and as of right now, the thought of having another baby brings anxiety, stress, and guilt.

On a funny note... Salesi asked me if I was going to post anything about my results. I told him, "probably not". He said I should write a post about it and call it, "CGD in the House".

8 comments:

  1. What are the odds that someone is a carrier of CGD? I thought it was a 1 in a million disease! I guess that means you are extremely unique?

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  2. Sorry about the test results. Prayers and support for you both.

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  3. CGD in the house! I think its so great that you are being so open and honest on this blog. I really look forwarding to reading what you've written.

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  4. That does suck! I'm so sorry. You do have a lot to consider. And that's so true, you can't replace one child by having another. It just doesn't work that way.

    I've read about ways to have a specific gender. My favorite was to eat lots of red meat and chips for a boy and lots of chocolate for a girl. Really? Who comes up with that? :)

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  5. CGD in the house does suck. Will you please call me now?

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  6. Hey Sweet Girl. I found you though the Angel Blog. I noticed your sweet little mans face immidiatly and had to come say Hi. I am so drawn to people who are in similar situtations as me. A Young child passing. Disease. Etc. Sounds morbid or something. I hate that I can find people like me. I wish I didnt. But I guess it helps me know my crazy feelings are okay. They are real and my daughter- no matter how long she was on this earth is every bit there, alive and real as someone who lived 100 years.
    Anyway. Im rambling. I wanted to just comment on this post. My daughter passed away of a genetic disease called SMARD. We have the 25% chance of any other child having it as well. I hate it. I hate those odds. I hate those thoughts that go along with it. So many people tell me, the odds are in your favor.... I hate that. We beat all the odds once. Who is to say it wont happen again. And even then. Even if I have a beautiful healthy child. They will never be my Makenzie. I will love them just the same but they will never replace her. They will never fill the hole that will forever be in my body without her. Im so so so sorry you have to feel this. Im so sorry you are on this road. I wish I could take it away. I see how soon Joshua passed. Agh. I hate it. I hate thinking of what to say to you because if youre anything like me, you are in utter hell right now. There is nothing anyone can say to make anything better. I felt like I was being burned alive. It was fire. Everyday. All Day. The only thing I can offer is just to be here. A friend. A listening ear. If you need to cry, yell or just tell stories of Joshua, I would love to hear. I am sure you have so many stories to tell. Just know you are incredible. I cant wait to go back and learn more of you and your family. Love Kendra.

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  7. I’m not sure I agree that your problms would be solved by having all girls. Nothing in life is guaranteed, even with expensive and time-consuming medical procedures---which only increase the chances of the outcome you want---not guarantee it. Girls get horrible diseases too, like diabetes, cystic firboris, AIDS, and leukemia. Healthy girls are born and die accidental deaths despite loving and attentive parents. Read the 1910 census for a look into the reality of motherhood 100 years ago. Each woman had to report how many children she had given birth to and how many were still living. (mother of 11, 5 living; mother of 4, 0 living; mother of 8, 3 living are some enries that I recall) And tweny years from now we could be reading a blog post by YOUR daughter saying “it sucks,” because she too is a carrier of CGD.
    I have been reading some websites devoted to patients and families affected by CGD. There is a lot of hope there. Children with CGD are happily growing up, attending college, getting married, having their own children. Some have even been cured of the illness. It isn’t a walk in the park, but it isn’t all doom and gloom.
    There is a national conference coming to Phoenix in June, devoted to immunodeficiency diseases. Many fun activities planned for kids of all ages at the JW Marriott Desert Ridge resort. Many top experts speaking. A woman from the CGD CAFÉ website wants to get a group of 25+ CGD families together at the conference. I want to meet them. I want to talk to some of these people with CGD and ask them what their lives have been like. I want to talk to mothers and ask them if they regret having boys. I want to know about health concerns and options for carriers of CGD. I want to believe that Joshua’s early manifestation of this illness and his brief life served a noble pupose. Perhaps he was not a messenger of despair, but of hope.

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  8. Thank you Mrs. Goodrich for posting a novel. I realized after I posted this that having girls is NOT the cure. I realized that if I have a girl who is the carrier, she will be in my sittuation one day, and that, too, really sucks! So it still sucks.. that's why as of right now, in vitro seems to be the answer, because they can remove the gene or something and suposedly guarantee me a healthy child..??? I will find out more when I see the specialist. But if if that works, the disease can stop with ME.

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