October is pretty packed when it comes to awareness. Obviously, our favorite cause is Down Syndrome Awareness. We do a pretty good job surrounding ourselves with people that love and accept Lillian, but through social networking like Facebook we still find a lot of ignorance in our world.
It is easy to get angry. It is easy to be upset. I have every reason to be frustrated at people that don't understand my daughter and her diagnosis, especially when it leads them to say something rude. But at the end of the day, I need to realize that it is pure ignorance. They don't know any better. Yes, there are people that are just malicious and can't be helped. There are also a lot of people that have good intentions but have the wrong or no information. This usually comes in the form of, "She doesn't look like she has Down Syndrome, she looks fine..." Or, "She acts normal, she does what other kids are doing. Maybe she doesn't have it as bad as other people with DS." The MOST annoying one, "Have you ever had her retested? Maybe there was a mistake."
😳...✋...😑...
Listen. My daughter's blood doesn't lie. My daughter is who she is. Now that that is out of the way, I understand that the people that can say these things just don't know what Down Syndrome really means, is, or what it looks like. They are given the same outdated information that so many parents receive when getting their diagnosis. Can you blame them for being surprised at how well many of our children are doing? In the past, Down Syndrome meant low quality of life living in an institution. (Insert huge thank you to every family that went against that and proved our kids are worth raising and loving and letting the world see what they are really capable of.)
I can keep going with nice facts about what Down Syndrome means today and what that means for the future, but I think it would be better to talk about what Lillian would like you to know about her.
Lilly would want the world to know that she isn't beautiful DESPITE having Down Syndrome. She is gorgeous because of it. Her pretty eyes and cute nose are directly related to DS. Just as someone's red hair or blue eyes can make them appealing, Lillian's Down Syndrome is part of what makes her so adorable. She also isn't an exception. She is no doubt amazing, but that's because she's my baby. The things you see her doing are the same things every other kid with or without Down Syndrome will do.
Down Syndrome doesn't mean she suffers. Her little sister doesn't suffer. Her parents don't suffer. Her family doesn't suffer. We are all blessed to have her in our lives just as we are blessed to have her little sister Maddy. Her personality doesn't scream Down Syndrome. Instead it says, "I'm Lilly and I'm cute and I ROCK."
Lillian has the same feelings as anyone else. She isn't too stupid to understand. She doesn't need to be treated differently than others. Down Syndrome isn't an excuse to let her get away with things or treat her badly. She knows which people will let her do whatever she wants, which ones will fall for her sad eyes and which ones tend to give in to her cute acts. She's very smart and knows who to play and how. Lillian is a wonderful big sister, daughter, grand daughter, niece, cousin, and friend. She is determined and strong willed. Lilly is smart and witty. She is strong and always ready to dance or play.
Most of all, she wants you to see her for who she is. She does have Down Syndrome, and this is what it looks like. Accept that. Embrace it.
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