Moebius Syndrome – Well to start things off, I would like to introduce myself and my amazing family. My name is Shannon and I’m a single mother of 4 Beautiful children. I have a 14 yr old son named Phillip, and 3 girls Kaleigh 10, Nichole, 8 and Alyssa, 6. They all are wonderful kids and always strive for the best. Alyssa is the exceptional one by far out of all my children that has overcome so many obstacles so far in her 6 years of life. She never quits – she just keeps on pushing herself to do her best and has such an outgoing personality. Don’t get me wrong she has said many times I can’t do it or it’s too hard but I’m always there behind her telling her she can do it.
Alyssa was born Saturday October,4 2008. She weighed in at 4 pounds, 14 ounces. By far the smallest out of the 4. I was a bit taken back after she was born. I knew she was going to have some problems but I didn’t know the full extent of her disability. I was offered at 5 months pregnant an abortion but I refused. Here I have a child in my stomach – not sure exactly what was going on, but she was a living human being regardless of what was wrong. At the time Moebius syndrome with Poland anomalies wasn’t spoken of to me. Alyssa was the first child born in that hospital with her condition. I can remember ther doctor that delivered her saying that both she and I were going to learn at the same time about Moebius.
While I was pregnant with her I would go for ultrasounds that lasted 3 -4 hours every week. They would measure every bone in her body. They told me she had a clubbed foot and was missing her toes on her left foot. They weren’t sure about her digits because she always hid her hands. They induced me 3 weeks early because she stopped growing and they told me she had retarded growth syndrome and if I was to go full term she would most likely be still birth. So my and Alyssa’s journey in life started early. I was nervous! One of my worst fears was having something wrong with one of my children.
When I had her I was able to hold her for only a few moments and they whisked her off to NICU. They told me at the time they thought she had Trisomy 18 – where the child didn’t live past the age of 2. She had a lot of the anomalies because it was mainly herleft side that was affected. They did blood tests and Trisomy 18 was ruled out.
Alyssa has palsy on the left side of her face. The fingers on her left hand are webbed together. Her legs and arms are different lengths and her elbows are placed up too high so she has to prop up her arm on a table to eat. Alyssa is missing all her toes on her left foot and she also is missing muscles in her chest. I was devastated.
I didn’t expect or even come close to imagine that she would have as many problems as she did.
I thought GOD was punishing me. For what or why I didn’t know.
I kept thinking – “why me? How am I going to handle it?”
I have 3 other kids and now a child with a disability that I didn’t even know existed or could happen to someone. It was very hard for me to accept that she was physically disabled.
To tell you the truth I was embarrassed. I’m not going to write this and lie. Point blank I wasn’t ready to accept the fact she was born different.
Since she was “different” I babied her and did everything for her thinking she couldn’t do it. I limited her to things. I finally realized no matter what syndrome she has, she is just like every other child and I was holding her back for fear she get hurt. I tell people she is perfectly normal. This is how God made her – and she was sent to me for a reason. God only gives the strongest battles to his best soldiers. Believe me we have traveled a long road already. Alyssa started receiving PT, OT ,and speech at 1 month old. She went to a great school from the age -4 for children with disabilities. I wanted her to stay there forever but I knew she couldn’t.
She became aware that she was born differently about the age 4. Her teachers found her in the corner with scissors trying to cut her fingers and told her teacher she wanted to look like everyone else.
It never occurred to me that she views herself differently from other kids. It broke my heart to know that came out of her mouth because I don’t label her as a child with a disability.
We have run into questions from kids and she tells them, “this is how God made me and I’m Beautiful”.
There was an incident on the bus they take for church and my sister goes to church with them. Another girl said to Alyssa that her hands were freaky looking and started telling another child on the bus. Alyssa got very self- conscious and started rubbing her fingers. I knew it had a big effect on her cause she just wants to “look” like everyone else. Chrystal explained to the child this is how God made her and she is no different from you or anybody else.
She told me later on that she has never been so mad and that unfortunate It’s the parents fault that don’t teach their children between right and wrong. I know as she gets older it’s going time be hard on her. Things are going to be said that are mean and hateful. Kids can be very mean nowadays. I build her up and tell her she is Beautiful. That is a big worry I do have for her and it’s going to take every ounce of my self – control not to go after someone that is going to hurt her feelings. But we will deal with that when the time comes.
Her siblings are very protective of her and I’m glad she has them also besides myself. Unfortunately there is no awareness of Alyssa’s syndrome where we live. I’ve never seen another child or an adult with her condition. It would be great for Alyssa to meet a child so she knows that she is not alone. A lot of people ask questions and even though I have looked up a lot about it I’m still not as educated as I would like to be.
We still have our journey in life to travel and I’m sure we are going to have ups and downs throughout life. Some of course are harder than others But how I see it God chose this life for us and put us on the path we are on.
I’ve learned a lot from Alyssa, and she truly is the most determined person I know. I’m thankful that God gave me her. I wouldn’t change one thing about her. She keeps my spirit going with her cheerful attitude and knowing how brave my little angel is and what she faces gives me strength in myself.
Never would I have though that my 6 year old would be one of the people I admire and look up to and to show me anything is possibly in life no matter the circumstances.