SMITH

Moebius1.org FAMILY ALBUMS
ARLENE SMITH


EMAIL
QUESTIONS & ANSWERS
1.) WHY DID THIS HAPPEN TO ME......DID I DO SOMETHING WRONG? (MEDICAL & SPIRITUAL ASPECTS)
I never thought I did anything wrong. I often thought maybe my mother or the doctors did, because all my life I've only heard it was a "birth defect." I didn't think it was my fault. Now that I know what it is, I feel good. I know now it was nobody's fault.
2.) HOW MANY SYMPTOMS DOES YOUR CHILD HAVE & HOW SEVERE?
I was born with crossed eyes, which were corrected with surgery. I have no facial expressions; can't blink or squint, can't close my eyes or move my lips. I have a little trouble with drooling but not very much. I can pull the right side of my mouth down with my neck muscles. My speech is normal (but all done with the tongue!). I never had any trouble sucking as a child, as far as I know.
3.) HOW LONG WAS YOUR CHILD IN THE HOSPITAL AFTER BIRTH?
I was born at home! The doctor came to the house. I have no idea what he told my mother.
4.) DID YOUR CHILD HAVE ANY SURGERIES RELATED TO MOEBIUS SYNDROME & WHAT WERE THE RESULTS?
My crossed eyes were repaired as a child; I have since had eyelid surgery to correct drooping lower lid that kept getting infections.
5.) HOW DOES A G-TUBE WORK......ARE THERE ANY PROBLEMS.....WILL MY CHILD EVER EAT REGULAR FOOD AND SWALLOW?
I have no idea!
6.) DOES YOUR CHILD NEED SPEECH OR PHYSICAL THERAPY.....IF SO, WHAT WERE THE RESULTS?
I don't think that was available back then. If it was, we were too poor to do it anyhow. I just figured it all out on my own!
7.) DOES YOUR CHILD EVER SMILE?
My kids tell me they can tell when I am "smiling," apparently by the movement of muscles in my neck and the way I clench my teeth when I am laughing.
8.) CAN YOU TELL ME SOMETHING ABOUT INSURANCE & FINANCIAL ASPECTS OF MOEBIUS SYNDROME?
The Lion's Club and the school got me the help for the crossed-eye surgery as a child. My husband's insurance did not want to cover the eyelid surgery until it became "medically necessary;" i.e., chronic infections threatened my eyesight.
9.) WHERE CAN I FIND OTHER PEOPLE TO TALK WITH ABOUT MOEBIUS SYNDROME? (DOCTORS - PARENTS - KIDS & ADULTS WITH MOEBIUS SYNDROME)
I just barely found this place myself. I've never met anyone else with it before!
10.) IN GENERAL,....DESCRIBE THE IMPACT OF MOEBIUS SYNDROME ON YOUR FAMILY....WHAT ARE WE UP AGAINST?
I was shy as a child. But after being made fun of a lot, I learned to beat up the kids that did the teasing! They were mostly boys. I took a LOT of teasing. I didn't date, nobody invited me out. When I met my husband, it was hard for me to believe he could like me. I was looking for a friend. I didn't expect him to fall in love with me. We were married 22 years. I have four wonderful children, 14 grandkids and one great-grandchild. My life is full and good. I have found much support from my church and its members. My faith has sustained me when things got tough. Finding this website has encouraged me a lot already.