Dear R.J. Palacio,
When I was 4 years old my sister, Darci, was born with Down Syndrome. I remember clearly, my aunt picking me up from school, and taking me to see my sister at the hospital, but she was not in the room when we got there; she was in the nursery room. We went to the little window where you can see into that room, and when the nurse saw us, she closed the curtain so that we couldn't see her.
When Darci was born she was really purple because of her lack of oxygen. The doctors knew she had Down Syndrome, but they couldn't figure out what was causing the other problem. She was life flighted to Blank Children's Hospital in Des Moines, one of the biggest cities in our area. We eventually found out she had a hole in her heart making the oxygenated blood mix with the non oxygenated blood. That condition is caused by 3 of the 21st chromosomes, which is Down Syndrome. At the time I really didn't know a whole lot about Down Syndrome, except that she was going to look different and it would slow down her learning process.
I wish that I had read you book Wonder sooner. There are so many connections to Via that I can make. Like when Auggie was having surgeries, Via stayed with her grandma, which is exactly what I had to. When I was 5 Darci had two open heart surgeries (the second was because the first one did not work). She was in the hospital for a total of 41 days. For those very long 41 days I lived with my great grandma. I would see my parents at the hospital during the weekends.
I can really relate to the way that Via feels about her brother, she is embarrassed by him but also loves him. That is the way I feel about Darci. Her condition is very different from Auggie's, but in ways, they are similar. No, Darcis condition is not a face deformity, but she has moments in public where she throws herself on the ground, and she wont get up. She will also start screaming, pinching, and scratching which draws attention to herself and our whole family and that can be very embarrassing. I always hate when people stare at her. I remember one time specifically, when we were at Disney World, people were staring and I would stare at them and give them dirty looks until they looked away. I feel that Via acted the same way.
Now I can tell, as other people can, that Darci is different from other kids her age. Other kids in her class are learning to multiply and divide, while she can barely write words.
Sometimes it is hard to have a sibling with disabilities, and I can really relate to Via. The way she feels about not wanting to invite her parents to her musical because she was afraid people would place all of their attention on August. I always want my parent to come to my events, but sometimes I feel bad because they have to find Darci a place to go, because she doesn't sit well in an audience. I also think it is cool how Vias best friend has a really close relationship with August because Darci has close relationships with my best friends.
What I really like about this book is that it shows how someone with a disability can affect the world, and not in a negative way at all. It is in a way that can show and teach kids how to be kind, caring, and respectful. When Darci is with the "naughty kids" they behave better when they are around her and are very caring towards her. Augusts story is a good way to display how people, like him and Darci, can change the world. When August goes to public school for the first time it is amazing how he changes the school. At first, The kids are scared of August when the meet him, and it is the same with kids who dont know Darci very well. Know that that kids have gotten to know Darci and August both, they absolutely love them.
I really liked this book because it opened up my eyes to more of the positives of having a sibling with a disability, and put where I can see that the negatives are also positives. For example, "My sister looks different from everyone else" turned into "My sister is special because she looks different, and there is no one like her." It is really truly amazing the effect that children and adults with disabilities can have on the world. They almost always have a smile on their face because they are happy to be alive.
People always ask me, "What is it like to having a sister with Down Syndrome?" They ask with concern, almost expecting me to describe it as a bad experience. Next time I should hand them Wonder and they will see it can be a burden, but is it more of a gift. As my family says, its like winning big in the lottery.