This is our baby Adelia.
She's 6 years old. She's hilarious. She's smart. She loves to say "butt cheeks" and "sucks to be you." She wants candy for Christmas and means it. She won't open any present that doesn't sound like it's candy. She shakes the box then hands it back with "Nah...that's okay." She yells at her baby brother. For nothing in particular. It usually involves "butt cheeks" or "sucks to be you." She wears her shoes on the wrong feet. I'll say, "Your shoes are on the wrong feet." She says, "It's okay. Don't worry about it." She likes to one up her dad with fart noises or bad jokes and say, "Sho you right." She has Cerebral Palsy. We don't know what that means in the long term. We only know that the long term will be shorter because of her disease. Her mom and dad have always worked hard to make sure Adelia lives her life like other kids. She does most things for herself. She's just not fast. She rides the school bus. She plays softball. She dances. She sings...badly, but loud. She fights with her older sister. She gets in trouble. I got to thinking the other day about what kind of life Adelia can have with a disease that gets progressively worse. Other than the obvious cure, what would I wish for her? I think I've proven in the short time I've been a blogger that sentiment is not my strong suit. So, I'm not one of those people who think that the disabled are inherently endowed with mystical, magical or pure qualities. I'm certain there are disabled assholes. I realize that's not a popular view. Not in a world where we are all in the stranglehold of political correctness. But, I stand by it. I say, good for them. There're plenty of non-disabled assholes, so please, feel free. And, I think only idiots say things like, "I don't want her to be defined by her disability." Have you ever seen a person who struggles with major disabilities? It defines them. They don't like it anymore than you do. So stop patronizing them. But, it all got me thinking... I want Adelia to fall in love, get her heart broken, make big mistakes, celebrate small victories, say the wrong thing at the wrong time, say the right thing at exactly the right time, hurt someone's feelings, kiss someone to make them better, cry like the world will end and laugh like it never will. I want Adelia to live a life in full, in all its glorious, messy, and complicated wonder. Years from now, I want her to visit me in the old folk's home with her shoes on the wrong feet, chocolate all over her face, making fart noises, telling bad jokes and saying, "Sho you right, Mimi." I just want her to live.
5 Comments
11/15/2014 10:06:13 am
She sounds adorable and hilarious. It also sounds like she has a lot of spunk. That carries people a long way from what I have witnessed.
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Kathleen O'Donnell
11/16/2014 01:54:49 am
She's my hero. Nothing gets her down. Thank you Lillian!
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My 3-year-old niece has cystic fibrosis -- and she is just full of spit and vinegar. For her, her disability is nothing special -- it just is. She reminds her grandma that she needs to take her enzymes before she eats and she sits in her percussion vest and uses her nebulizer while she quietly looks at her books or watches a video. Her life might not be as long as other kids -- but she's going to make sure it is as full as it can be.
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Kathleen O'Donnell
11/16/2014 01:56:44 am
Kids are amazing. They adapt much better than adults. Adelia's attitude is what keeps us all, especially her mother, from hysteria. She holds it all together for us. Best to your spunky little niece. She sounds like a great soul.
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