Tuesday, January 29, 2008

Fragile X Reality

Well, I recently got some news that my 18 year old niece (I'll name her Renee) is planning on moving in with her boyfriend. I don't mean to offend anyone out there, but this is not something I believe is right to do. Now, let me also say that I have not had an angel of a life by any means. Luckily, the Lord came and saved me and I have had a personal relationship with Him as my Lord and Savior since 1996. So, just to set the record straight, although I do not agree with what she is planning, I am NOT judging her. I love her all the same.

Okay, now I can go on. Basically I want to just get off my chest that I am sooooo worried about her getting pregnant. Bit of background - my older sister (40) got tested for Fragile X after our 1st diagnosis. She is a carrier, but her daughter is not. My oldest sister (51 and mother of Renee) has not been tested and doesn't plan on getting tested because she won't be having anymore kids. She has 2 kids - my 25 year old nephew and Renee - who also have not been tested. My nephew and I have a very close relationship and he knows exactly how I feel about the importance of him getting tested before he thinks about marrying someone. He would probably do it just to get me off his back! :)

Renee is pretty immature and easily influenced, as you might figure for an 18 year old girl in today's world. I think she also has the mentality of most 18 year olds....you know, the one that says, "Oh, it won't happen to me" or "You're just exaggerating what could happen". Thus, she would have no intention of getting tested, at least not now.

My problem is that I just don't think the rest of my family (who does not live in the same state as me and does not see my life day after day) sees the reality and severity of what could happen. I can understand this from their point of view, not having to actually LIVE with the full mutation Fragile X. But being the one living the life with my awesome children, I see all the reality. While I'm sure they agree that the pre-marital sex is not what God intended, they are more focusing on "get to the doctor and get on birth control." Hate to be the bearer of bad news, but that doesn't fix the problem and there are no guarantees with that. There's always the chance of the pill not working, forgetting to take it, etc. I would rather her see a different side of this. Problem is, we don't really have a close relationship. It's not a bad one, just not close.

Maybe I'm too much into trying to 'fix it' or protecting her. But is that really a bad thing in this circumstance?


r_is_moody said...

I definately think that you need to talk to her about it. She needs to be informed. Maybe you could talk her into spending a few days with you guys so she can see what it is like first hand. And then maybe reality would slap her in the face!

FXSmom said...

Your niece definitely needs to be aware.

I read a long time ago that us FX carriers are 4x's more fertile, but 3x's more likely to miscarry, than other "normal" women. I've never seen that statement since but I've seen plenty of carriers that could back this up.

I got pregnant 3x's...all on the pill and using a condom. I miscarried once.

Another fellow FXS carrier blogger has gotten pregnant extremely easy, been pregnant 5 times, and has miscarried 4. She is now on her 6th pregnancy in 3 years and praying for just 1 more baby...FXS or not.

I hope your niece will be receptive and at least get tested to see if she is a carrier so she can make the right decisions for her and her boyfriend. Good luck and keep us updated.

FXSmom said...

Hope things are going okay

BTW I have a Grrrr8 Blogger Friend Award awaiting you on my site :) Happy Valentine’s Day!!

Kristiem10 said...

I don't think you are out of line. Another thing to consider besides being fertile is that carriers have more instances of having twins. Twins with Fragile X would be extremely challenging! Especially for an 18 year old.