You parents have it so good today...

[Sean]

Parents can give their Moebian children a good head start on life using many things that are out there now. Back then, forget it, all my parents and Tycho's parents had to decide what was the best for us were themselves and doctors who knew nothing bout the disorder. We had to do it cold turkey. No surgeries, no groups, no anything. Now that I look back on my first 34 years of my life, I wouldnt have it any other way. It was very tough, and at times I really hated growing up with Moebius...but it strengthened me up a lot. I wasnt spoon fed magical remedies to help cure my sagging eye, my right portion of the mouth, my speech, my handless arms, anything. I just faced it head on.

I hope, with all these surgeries and everything else you guys have today, that you won't get too spoiled. Or you won't take a lot of it for granted.

Because Moebius is livable. It can, for the most part, be dealt with, with few extra accessories. All these cosmetic surgeries these Moebians have...it's all in the mind. Seriously, not everyone turns their back on us because of our looks....and if they do, they aren't worth gettin to know anyway.

[sagi]

not everyone turns their back on us because of our looks....and if they do, they aren't worth gettin to know anyway.

Firs let me say I agree with every word

While I was born "only" 20 years ago the situation was pretty much the same except the doctors told my mom from the start I have moebius... yes it was tugh and I admmit at times its still cuses trouble. but I also know that moebius brought me to the place I am at now surronded with good friends and in good job. and I dont think any surgery would have helped me get to this point.

on the other hand if you are realy sure you want any surgery dont let anyone stop you just think if its realy worth the risk and diced for yourself..

[Sean]

Exactly. You can have good friends, a good job...and in my case, a very beautiful loving caring wife PLUS a normal kid..and you can still have it all left untouched.

Most of you have love troubles...it is hard to find a mate...but look at it this way...dont put yourself through surgery because of it...it's not your fault...it's theirs. There are a lot of people in both sexes that go by appearance. IT SUCKS! I hate the thought of it...it's not right for them to judge you by that...but...think positive...its better to have family, good friends, and no lover than it is to have nothing at all.

[grace19]

I don't know if the parents today have it easy. But they have more resources. I'm really glad they do have choices and options to choose what is best for their child.

Good post Sean!

[Sean]

7 years ago, on this board, (when it was on another website), I said almost the same thing as I did here. Boy I got attacked from every single parent. It started a big ol' argument. Sean vs the parents. Boy that was fun. lol They didnt understand where I was coming from. I grew up with no resources...none, except many dental, speech therapy visits, and my prosthetic arms And I'm a married man with a son...a normal son. My parents raised me normally...heck, they didnt even seek out any Moebian resources..I had a near normal youth. I'm loving my life now. I'm strong, independent, determined, all because of my near-normal upbringing with no mention of the word Moebius. My parents knew what I had...but I didnt ask...I didnt care. I just took myself for what I was born with..said "O.k., I can deal with this." and grew up. First time I heard the word Moebius Syndrome, honestly, was when I was 26. I asked my mom, "Now what was it that I was born with." I was diagnosed looooooong time ago...I was curious only 8 years ago..because of my wife and I wanting to have kids.

I didnt center my life worrying about what I had or why the heck I have it, or how did I get it...none of that. I was too into life to worry bout it. I was having a good childhood...I just thought I was a bit different..thats all.

[mikes mom]

Coming from the parent perspective, I am very grateful for all the resources that are now available. Mike is 17, so he was born P.I. (pre internet). For multiple years we were among those who were told that we would never meet anyone else with Moebius Syndrome, that there were only 86 diagnosed cases in history!!! I am so glad that parents now have access to information that will help them with feeding issues, medical issues, etc. No need to invent the wheel over and over!

Its amazing how different people deal with the hands life deals them. I remember another adult who used to post. She did not get the diagnosis of Moebius until she was (I believe) in her fourties. That was okay until she found out that it had been in her medical records since her late childhood. She was crushed not to have the diagnosis earlier, stating that she would have been thrilled to know it was "something", not just her, that there were others in the world like her!!

I don't know what makes people react differently. Sean, if you have more children you will find that you bring two children into the same house, give them the same love, enforce the same rules, and yet they turn out so different. My John is 14, and luckily my second great kid. He has so much going for him, He is incredibly intelligent, good looking and above average athletically. It turns out he is the one who is sensitive. He can't stand being critized, and really wears his heart on his sleeve. I think if he had been born with Moebius, he may have found it much more difficult than Mike has.

Mike says that on a scale of 1 to 10, Moebius is "maybe a 2" in his life. Isn't it odd that as a parent, I think about it everyday--I don't mean all the time, but it does cross my mind. Not like in the beginning when it was all consuming. A parent cannot stand the thought of life being hard on their child. I bet there isn't a parent out there who in the beginning didn't think something to the effect of "take my right arm, but make my kid okay". Then, it turns out to be "maybe a 2" to my kid.

As your child grows older, it is much easier to have them making the decisions regarding treatment. When they are little, and their happiness is your responsiblity is when its really tough. You worry about so much!!!

[xxx Kac]

im sorry to say but its not that easy!??!!? u cant just cover it!!! and even as hard as u try SURGERY will never fully be able to hide it completely...... </3

and besides my parents were 18 when they had me, they had no idea, and now because my father is an abuser and all and my mother is suffering from depression i was taken off them, and they dont even care about me so.....its been hard, but i live with my grandmother and golly gosh....she would die for me, and i love her so much for all this....geese, lol even talking about this syndrom thing i always get teary........but yeah..... the best thing i have learnt, is that, it doesnt matter what you look like, or how many people like u and w/e because you have parents, you have family and some friends, who love and accept u and are always going to be supporting u forever....and that is truely special, and there for theres no need to worry or anyting because, everyone is beautiful, and if people like 'us' are thrown off and w/e it doesnt matter, because they can get stuffed ^_^ ....woohoo go family!!! <3 u!!!!!!