Just keep smiling...
- Danielle Appleby
- Sep 2, 2015
- 2 min read
It is a very real struggle, living with a disability. I never could have imagined or put myself in someone else's shoes if Juliette had not been afflicted with one.
She does everything differently than you or I. She has to put a ponytail in with one hand, she cannot swing on the monkey bars, she has to put her right mitten on using her teeth (which makes me cringe and worry about her teeth). There is a huge list of things that she has had to modify, or simply avoid. I cry sometimes when I think about it.
Her medical appointments are so frustrating for her. It is often us and about 2 or 3 specialists, their colleagues and all of their student physicians. There are sometimes as many as 10 medical professionals in a room with us, all looking at Juliette's left arm. They each take a turn asking her to move it in ways that she can't, asking her to open her fingers and flex her wrist and wave her hand, which she can't. Then they discuss it among themselves, over our heads, asking each other to make note of the disability and the many ways she struggles with it. I can see the embarrassment on her face. She is a very strong willed child, and defeat is exhausting. She will usually humor them for the first 10 minutes or so, but then she starts to overcompensate for what she considers her shortcomings. She starts telling them all the things she can do with her right arm; demonstrating the way that she zips her zipper with one hand, can snap her fingers, and do a thumbs up. They nod politely, then ask her to show them how she snaps with her left hand. She can't. They know that. They take more notes.
I feel nauseous through most of this, and my hands get sweaty and I put on a really good fake smile when the doctors finally speak to me. I believe I've perfected this smile, over the years, because I always want to look like I've got it together while inside I'm screaming. I nod and take notes, even though I've heard it all before. There's nothing new they can tell us. There's nothing they can do. There's nothing I can do. I just keep smiling.


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