Another Terriism...hey at least they arn't involving the f word as much.
My blog posts have been getting further and farther between. I will try to fix that. Lord knows I need to get things out....I need to find a healthier way to do it. For a while now I have been way too reliant on Crackbook...I mean Facebook and that is ending. I thought about deleting my page all together and I did. In a matter of hours I had a few friends in a uproar...So I will leave it for now. Please don't expect my every thought and happening to be posted there anymore.
It's weird. I fought going to Facebook for a while but all my friends were there. I had a few people speak of privacy concerns and being addicted to it. I became a Facebook addict. I checked it my page 2-3 times an hour all day..every day. I posted every conversation, thought and feeling on it. I would get upset when I got no response from people I didn't even know. Then it got to a point that I had to think about every post so as not to offend anyone. Why? Because people start to believe that every post is directed at them or about them. A while back I had a fellow RettMom darn near lose her mind when I didn't respond to things she would say or post. It wasn't that I hadn't read her stuff...I just didn't have anything to say about it and apparently that made me a horrible person.
I very recently lost someone very dear to me because I chose not to post when we were having some kind of tiff that I was clueless about. I mean I knew something was wrong but couldn't see their side and they couldn't see mine and instead of talk about it...or not talk about it I'm afraid the friendship is lost..and that hurts me. I honestly thought by not mentioning them or it on Facebook that it was keeping it between the two of us. They unfortunately saw it as disrespect. I never intended to hurt anyone by anything I said or didnt say or by trying to respect what I thought was going on at the time. See? Facebook sucks. I probably kind of suck too and this is the last I am going to say on this subject.
I have also.....kind of stepped away from the world of Rett Syndrome...If that is even possible since I live and breath it but I just couldn't be all Rett all the time. I had to face that it is something I am going to have to learn to live with. I needed to move on. I still have hope. I am still there for anyone that needs me..it just can't be all that I am. It was smothering me.
This past weekend I went to New York and spent 2 days in a class trying to learn how to better communicate with my Abby. I found myself not wanting to be there. There was a time when I would have wanted to be nowhere else than with 50 other people that get it. All I saw was 50 broken hearted parents and families.
On Saturday nights I had dinner with 3 Rett parents I already knew and love, one of my besties and a couple I had kind of met that day in class. I just wasn't me. I saw the raw hurt on one Moms face when we talked about the things people say. In this instance it was the grand old,"Everything happens for a reason."
I could barely look at her as she tried to convey her feelings with another parent who felt the opposite as she did. I was just frozen. I'm sure that term does make some people feel better. I am not one of them and neither was she. Her baby is a couple of years younger than Abby. The counselor, Mom and sisterhood in me wanted to take her from that table and go somewhere quiet and hold her hand and let her cry. Let her cry and tell her it is OK to feel the way she does. The nervous wreck in me..the one trying to pull away just sat there choking back the tears and trying not to look at her. I'm sorry for that as I write this. Her and her husband are lovely people and I hope we maintain contact..at the time I just couldn't. New York made me an absolute nervous wreck and I was out of my element. Hugs to you J and S.
What am I trying to say here... The official duties in the world of Rett Syndrome is done for me for now. The person who cares and is here has not. Does that make sense?
I need to be Terri, I need to be Kyler and Abby's Mom. I need to get back to the hysterical person that gets me through life. I am not Rett Syndrome. It stole my daughter, broke my family, my career and my lifestyle. It has tampered with my faith, broke me, my marriage and most of my relationships in the outside world. I need to get back to the outside world before Rett Syndrome swallows me all together....
My blog posts have been getting further and farther between. I will try to fix that. Lord knows I need to get things out....I need to find a healthier way to do it. For a while now I have been way too reliant on Crackbook...I mean Facebook and that is ending. I thought about deleting my page all together and I did. In a matter of hours I had a few friends in a uproar...So I will leave it for now. Please don't expect my every thought and happening to be posted there anymore.
It's weird. I fought going to Facebook for a while but all my friends were there. I had a few people speak of privacy concerns and being addicted to it. I became a Facebook addict. I checked it my page 2-3 times an hour all day..every day. I posted every conversation, thought and feeling on it. I would get upset when I got no response from people I didn't even know. Then it got to a point that I had to think about every post so as not to offend anyone. Why? Because people start to believe that every post is directed at them or about them. A while back I had a fellow RettMom darn near lose her mind when I didn't respond to things she would say or post. It wasn't that I hadn't read her stuff...I just didn't have anything to say about it and apparently that made me a horrible person.
I very recently lost someone very dear to me because I chose not to post when we were having some kind of tiff that I was clueless about. I mean I knew something was wrong but couldn't see their side and they couldn't see mine and instead of talk about it...or not talk about it I'm afraid the friendship is lost..and that hurts me. I honestly thought by not mentioning them or it on Facebook that it was keeping it between the two of us. They unfortunately saw it as disrespect. I never intended to hurt anyone by anything I said or didnt say or by trying to respect what I thought was going on at the time. See? Facebook sucks. I probably kind of suck too and this is the last I am going to say on this subject.
I have also.....kind of stepped away from the world of Rett Syndrome...If that is even possible since I live and breath it but I just couldn't be all Rett all the time. I had to face that it is something I am going to have to learn to live with. I needed to move on. I still have hope. I am still there for anyone that needs me..it just can't be all that I am. It was smothering me.
This past weekend I went to New York and spent 2 days in a class trying to learn how to better communicate with my Abby. I found myself not wanting to be there. There was a time when I would have wanted to be nowhere else than with 50 other people that get it. All I saw was 50 broken hearted parents and families.
On Saturday nights I had dinner with 3 Rett parents I already knew and love, one of my besties and a couple I had kind of met that day in class. I just wasn't me. I saw the raw hurt on one Moms face when we talked about the things people say. In this instance it was the grand old,"Everything happens for a reason."
I could barely look at her as she tried to convey her feelings with another parent who felt the opposite as she did. I was just frozen. I'm sure that term does make some people feel better. I am not one of them and neither was she. Her baby is a couple of years younger than Abby. The counselor, Mom and sisterhood in me wanted to take her from that table and go somewhere quiet and hold her hand and let her cry. Let her cry and tell her it is OK to feel the way she does. The nervous wreck in me..the one trying to pull away just sat there choking back the tears and trying not to look at her. I'm sorry for that as I write this. Her and her husband are lovely people and I hope we maintain contact..at the time I just couldn't. New York made me an absolute nervous wreck and I was out of my element. Hugs to you J and S.
What am I trying to say here... The official duties in the world of Rett Syndrome is done for me for now. The person who cares and is here has not. Does that make sense?
I need to be Terri, I need to be Kyler and Abby's Mom. I need to get back to the hysterical person that gets me through life. I am not Rett Syndrome. It stole my daughter, broke my family, my career and my lifestyle. It has tampered with my faith, broke me, my marriage and most of my relationships in the outside world. I need to get back to the outside world before Rett Syndrome swallows me all together....
until my next post anyways....
Love to all