Guestbook

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9 thoughts on “Guestbook

  1. Kelsey you are a true advocate for Moebius. Thank you for sharing your thoughts and feelings…it means so very much to everyone touched by Moebius.

  2. We are from northwest Georgia. We apparently have cornered the market on Moebius. My husband, who has Moebius, was adopted before he was two years old. We married in 1979 and began some research into his biological family. We found his grandfather, father, one half-brother, and one half-sister had Mobius, to varying degrees of challenges. We have a son and grandson who have Moebius. All shared the facial paralysis, degrees of hearing loss (except for my grandson who at eleven has had many surgeries for tubes in his ears, but at present still has hearing well within the normal range), and some outer ear malformation. We are raising our wonderful, bright, witty, and altogether awesome grandson. His father (who also had Moebius) passed away a little over 4 years ago.
    I am normally a very talkative individual and would love to exchange ideas, stories, advice, and just chat. Today I am tired for some reason and just wanted to chime in here when I found this.
    If I had to mark one thing that makes the point of Moebius, it would be that most children, and even adults, will never see another person like them. They go through life and just accept they live in a world where everyone else is like each other, and they are different in ways that affect how others perceive them (especially the lack of expression and speech impediment). Most Moebius children never see another person that doesn’t have a smile, simply because their face won’t cooperate. My son and grandson have had school photographers tell them to smile, and then thinking the child wasn’t trying, tell them again to “Smile!!!”
    I am tired and just feeling blaaahhhh. But just wanted to tell you that it is nice to, at least in some small way, connect with families who face the same challenges as we have for almost 50 years.

  3. thank you for sharing your story ! You write so well, I think this is your calling to reach out to others and to also inform other people like me.

  4. Follow up on Jake Busby. Jake is currently “skipping” 6th grade and has been elected by his classmates as President of his 4-H class. He excelled (by far) on last year’s (5th grade) CRCTs. Algebra is his toughest subject this year (in seventh). He is now 5’9″ tall, about 180-190 pounds, size 13 shoe and his voice has already changed to a warm rich base. As of yet, he has never met another child with Moebius Syndrome.
    I am concerned about his “inner thoughts” that a teenage guy might be having because of his need to be accepted by his peers and I believe on a personal level that is going well, but I don’t know about the guy/girl thing. Gotta go, but good luck to all and blog again soon.

  5. Howdy! Quick question that’s completely off topic.
    Do you know how to make your site mobile friendly?
    My blog looks weird when browsing from my apple iphone.
    I’m trying to find a theme or plugin that might be able
    to resolve this issue. If you have any recommendations, please share.
    Appreciate it!

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