Moebius1.org |
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PLASWAY |
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QUESTIONS & ANSWERS |
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| 1.) WHY DID THIS HAPPEN TO ME......DID I DO SOMETHING
WRONG? (MEDICAL & SPIRITUAL ASPECTS) |
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| It is never a question of whether God or I did something wrong.
It is about who is Sovereign and who is not, (which is man). Consider this: when a blind man was brought to Jesus and the Pharisees asked who sinned his parents or him-- that the man was born blind. Jesus told them that neither of them sinned but this happened so the glory of God may be manifested through him. The man was healed in that instance. But because this man was healed and I was not, does this mean I am less in the eyes of God? I don’t think so. Consider this verse. In Psalm 139, “… you knit me together in the secret place. You formed my inmost being.” Something like that. If God made me as this verse says, He LOVES me just the way I am! He already knows I am physically different and I am not going to shock him by my physical appearance. Do I know why God allowed my disability to happen to ME? No I don’t. In some ways, for me, that answer is irrelevant and unnecessary. As long as I stay angry and bitter at God for my disability-- I will not see how much He DOES love me and wants me to grow (spiritually, mentally, emotionally & succeed in this world) for Him. God just doesn’t use the perfect, “normal” person— which I am sure many know already— He uses us too! God’s glory and power can be made manifest—perhaps as that verse suggests—through us in greater measure because we are physically different and we probably possess character qualities that “normal” persons don’t have. Trust me, there will be lots of things in this life that will happen and we will scream “where is the justice?” but as long as we look around or at ourselves, we will never see God’s power or love. |
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| 2.) HOW MANY SYMPTOMS DOES YOUR CHILD HAVE & HOW SEVERE? | |
| 1. facial paralysis- little movement in the eyes 2. left side of lip- can pull muscle in left side downward 3. cannot move lips or close them 4. no fingers on either hand- completely independent at age 24 5. everything else seems or looks normal! |
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| 3.) HOW LONG WAS YOUR CHILD IN THE HOSPITAL AFTER BIRTH? | |
| I am not sure of all the details but I was told I stayed in
the hospital for 1 year after birth and they didn’t expect me to survive past a year. But by the grace of God, I made it! I had difficulty swallowing, they used the G-Tubes on me and they thought I was blind (turns out they were wrong). |
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| 4.) DID YOUR CHILD HAVE ANY SURGERIES RELATED TO MOEBIUS SYNDROME & WHAT WERE THE RESULTS? | |
| I am not sure if I had any surgeries. I had club foot but exercise
therapy and reversing shoes corrected that problem. I had smile surgery done to both sides of my face about two years ago and it was successful. Yay! I don’t regret having that done at all! |
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| 5.) HOW DOES A G-TUBE WORK......ARE THERE ANY PROBLEMS.....WILL MY CHILD EVER EAT REGULAR FOOD AND SWALLOW? | |
| I can only speak for myself but I had a G-tube when I was a
baby and it seemed to work for me. I ate regular food when I was about three or something. I eat just about anything that crawls, walks or grows nowadays! :) |
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| 6.) DOES YOUR CHILD NEED SPEECH OR PHYSICAL THERAPY.....IF SO, WHAT WERE THE RESULTS? | |
| I think when I was five to age eight—don’t quote
me on this—but I had speech therapy. As far as I know, it helped a little bit and the therapist after a certain time said I was going to speak as clear as I ever would. I just needed to speak slower and enunciate. |
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| 7.) DOES YOUR CHILD EVER SMILE? | |
| Nope, just a regular grouch! :) I am kidding! No I have no
facial expression— except for the fake smile that was plastered on me two years ago. (That is, smile surgery.) :) But seriously, watch my dark, chocolate brown eyes and you will see that I have expression! |
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| 8.) CAN YOU TELL ME SOMETHING ABOUT INSURANCE & FINANCIAL ASPECTS OF MOEBIUS SYNDROME? | |
| No idea. I live on MSP off of the Canadian government and they
just love payin my doc bills! No, I hardly ever see the doctor. When I got my smile surgery, BC Medical, MHR and I am not sure who else fund my surgery and my trip down. |
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| 9.) WHERE CAN I FIND OTHER PEOPLE TO TALK WITH ABOUT
MOEBIUS SYNDROME? (DOCTORS - PARENTS - KIDS & ADULTS WITH MOEBIUS SYNDROME) |
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| On the Internet… check out the MGH Neurology Web Forum
and MGH Neurology Chat rooms so they can meet new friends who are Moebians too. Or sign on any chat forums or forums put on by a Moebius person. Oh yeah! Email anyone with Moebius and s/he will write back. If they’re really nice, they will give you a list of others who have Moebius Syndrome as well. :) |
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| 10.) IN GENERAL,....DESCRIBE THE IMPACT OF MOEBIUS SYNDROME ON YOUR FAMILY....WHAT ARE WE UP AGAINST? | |
| 1. questions- from other kids or adults who are curious or
who don’t know anything about that disability 2. ignorance/ teasing by other adults or kids- people who don’t know how to respect another person who is physically different or don’t respect him/her because he hasn’t been taught that even people with disabilities are people too 3. patience- a child needs to learn to adapt himself to the world around him- a learning process for parent and child Hoped this helped! Have a great day. Sincerely, Ann M. Plasway |
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