How do I get past these feelings that I broke my son? I am the one that gave him the “bad x.” How do I get past the fact that he will never be able to do the things I had hoped he would do? I know this must make me a bad mom, but I feel like I don’t have anyone else to talk to about this. My precious boy is only 6 weeks old. We have not yet seen any specialist so we are just starting our journey together. I have to admit I am terrified. I am the mom I should be stronger then this.
I totally know how you feel as when our son was born he never slept or fed very well as he was also born tongue tied which made feeding very difficult. The only thing was I fought the doctors for 2yrs and they kept saying there was nothing wrong with him and on top of that I had so called friends that convinced my husband that everything was in my head. I ended up suffering from post natal depression. My husband blamed himself for our sons problems for a long time until someone suggested getting a genetic blood test so we did and I think he was about 21/2yrs old and then I was tested and found it was me who passed it on and made me feel very upset cause I had a child that I would never be socalled normal. As time passed my husband and I have done Marriage counsilling and any other parenting courses and appointments with any professional there is which has helped caused they actually listened to me. Now that you know from a very young age I would investigate all the help that you and your family need and try not to feel bad cause you passed it on. The sooner you accept that this is the way he is the better you will feel. I still have family members who do not accept Toby’s condition and he is nearly 9. Get all the family,friends and professional help for everybody especially yourself. Please don’t let your guilt rob you of the good times that you can all enjoy. brenrose
I didn’t know that my son had Fx untill this past summer, when he was 5. At first I was happy to finally know what was wrong. But now, every time I see a “normal” baby, I feel a stab of pain. I know I will not be able to have a perfect child. Even if I had one that was “normal”, they still would probably be a carrier. I don’t want another one anyway, but I still feel robbed, that I never will know what it’s like to have a “regular” kid. But, I’m glad that I know that I am a carrier, and that my younger sister might be too, so she is aware before she has a kid. And really, it’s not so bad having a son with FX. It could be worse. It could be alot worse. For a long time I thought my son was the way he was because I had done lots of drugs when I was younger. It’s almost a relief that he has this FX because of my DNA. There’s nothing I could do about it. And also, I believe that everything happens for a reason, and that nothing happens to me that I can’t handle. And what doesn’t kill you, makes you stronger.
I will be out of the office Nov. 12-16 at the Enterprise Community Conference. I will be checking my emails at least once each day. If this is an emergency, please leave a voice mail at 410.772.2746. I will be checking voice mail more often. Otherwise, I will repsond to your request upon my return on Nov. 19.
Have a wonderful day!
I understand exactly how you feel. I did not find out as early as you but both my boys have been diagnosed. My older one is 4 1/2 and my little one is 17 months. We found out this past June. All I can say is that it will get better. This is the darkest period. You have to channel?all of the negative energy and focus it on getting your son all the help he needs.?Since you caught it so early, this will only serve him because you know what you have to do. Where we live, they have something called Early Intervention thru the public schools.?Children are eligible from birth to age 5 and it is free. I don’t know if they have this where you live but you have to inquire. You are the best advocate for your?son so you will have a lot of work ahead. Finally, he is a boy before anything and he?just happens to have fragile x.
Good luck and take?good care of both of you. And?it’s not your fault.?
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-----Original Message-----
From: fancy fragilex-cpt6616@lists.careplace.com
To: cobcoins@aol.com
Sent: Sun, 4 Nov 2007 6:10 am
Subject: [fragilex] Feelings