My little sister was born with Amniotic Band Syndrome (ABS). ABS happens when a band wraps around a limb causing the baby to have a difference in their arms, legs or both. It caused her to be born without her lower right arm.
AvaMarie Paisley Perrault was born September 2nd, 2011. Our Mother found out on the first ultrasound that Ava wouldn’t have a right arm. My mom cried right away and the rest of us were devastated. Questions started running through my head. “How is she going to get dressed or ride a bike? Would she be able to do anything by herself?” Simple things that people with two hands and ten fingers take for granted would now be a struggle for my little sister. After a while, the thoughts and questions left my mind and I was just excited to have a sister after having three brothers. All of us kids were counting down the days until September 12th, her due date.
AvaMarie came ten days earlier than expected. When I arrived at the hospital, Ava was in the NICU. She was absolutely perfect in every way. My mom told me not to worry about her not having an arm and she was going to be just like us. It was just going to take a little longer for her to learn how to do things. When she was a baby, she used her feet for just about everything she did.
When Ava was about nine months old, she got her first prosthetic. It didn’t do anything fancy, it just sat there for her to get used to wearing an arm. Ava didn’t care for it much and chose not to wear it. Around the age of a year and a half, Ava received a myoelectric prosthetic arm. When she moves her elbow back and forth, it opens and closes. Through all of this, Ava attended therapy. This fall will be her first year going into special education pre-school. She still prefers not to wear her arm. Ava can eat, get dressed and put her shoes on all by herself. My sister enjoys to play dress-up and catch. There is a one armed musician named Tony Memmel and any chance she gets, she listens to him. Ava is actually in one of his videos called “The Lucky Fin Song.” We call Ava’s right arm her “nub.” If you ask her to give you nub, she will tap it on your hand and laugh. Ava knows that she is different, but doesn’t think of herself any different from her family. If you ask her if she has two hands, she smiles, laughs and says “No, I have one arm and one nub.”
“It’s not nice to stare” is a saying we’ve all heard before. Going out in public is a struggle for my family. Anywhere we go, people tend to stare and make comments amongst themselves. I see it as being rude but being curious at the same time. Ava and her brother, Zander, love going to the park near our house. Every time we go, kids of all ages will come up to my mother or I and ask what happened to her arm. We have no problem explaining to them what happened, I prefer them to ask than whisper to someone else. One time while at McDonald’s, Ava was playing on the play place and a kid thought it was funny to laugh and run away from her, acting as if she was a monster. He kept pointing out to people that her arm was different and that made me very uncomfortable, so I went and talked to the guardian. Learning to accept that people are going to make fun of her and treat her different is something that I haven’t done yet. I don’t understand how her missing her right arm makes Ava an alien or a monster to other people. Yes, there is a physical difference but does that really make her a “bad” person?
To read Samantha’s post on Scholastic’s TeenBeing blog, click here!