Siblings’ Perspectives Video

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Transcript of Siblings’ Perspectives Video

Narrator 1: A boy holding his toddler sister.

Matt Bushland; Sister: Mary Rose, Age 2; Leber’s Congenital Amaurosis.

A girl smiling with her toddler brother.

Callan Ann Smith Cobb; Brother: Max Smith, Age 2; Bilaterial Anopthalmia

First Reactions

Narrator 1: Matt Bushland.

Matt Bushland: At first it was really hard, like everybody was just in shock and like, how? Why? ‘Cause what my first reaction was just, how? How did it happen? How did my mom and dad have four kids and then the fifth one be blind?

Narrator 1: Callan Ann Smith Cobb.

Callan Ann Smith Cobb: At first I was confused, like I was young, I was about 8 years old, I think, when that happened and I didn’t really understand how the body doesn’t produce the eyes, ’cause like I’m — I have like everything produced in my body. So I’m like how does your body just like not work that way? But like when I was like nine, now 10, I started to understand that it just, it does not develop.

Helping Out

Narrator 1: Matt Bushland.

Matt: Now I tell her like, “This is the kitchen and Mommy’s cooking in the kitchen right now. Can you hear the water boiling?” or something. I let her feel a lot of stuff and I let her feel my face and my hands a lot, so that way she’ll like recognize what it is. And like I touch her nose and I say, “It’s your nose,” and she’s starting to get that this is her nose and this is her ears.

Narrator 1: Callan Ann Smith Cobb.

Callan Ann: When like we’re just waiting in the store, I’ll play with him, I’ll talk to him, I’ll tell him what’s around him. I’ll say, “Oh, we’re about to go into an elevator, Max.” This will go… If we’re going up, we’ll say, “The elevator’s gonna go up, you’re going to have a weird feeling in your stomach for a couple seconds.” I’ll tell him what’s around him since he cannot visually see that.

Handling Comments

Narrator 1: Callan Ann Smith Cobb.

Callan Ann: Well, we were actually at this ice cream store called Carousel. We were just sitting there and this lady comes over and she starts like all touching Max. She’s like, “Oh you’re so cute, oh you’re so cute,” and just like starts saying like, “So what’s wrong with his eyes?” We’re like, “He’s blind.” And it’s like, “Oh,” and then we have to tell them like all of his life story and everything like that, and we’re like, we’re not so comfortable giving out that kind of information when somebody asks.

Feeling Left Out

Narrator 1: Matt Bushland.

Matt: Sometimes I feel a little left out, like they don’t even notice that I’m there ’cause they’re just so…with Mary, but other times, I can feel that they’re really trying to get the family together, so that way like, we know that we’re not being left out or anything.

Narrator 1: Callan Ann Smith Cobb.

Callan Ann: Sometimes when I’m trying to speak to them and like they have to put his eye in or something, they’re just totally focused on him and like, well not me. I kind of get a little frustrated that — I know like they try as much as they can to do my needs and everything, but I understand that he needs it most.

Hopes and Dreams

Narrator 1: Callan Ann Smith Cobb.

Callan Ann: Well, I hope his life is whatever he plans out to be. If he wants to like be the President of the United States or go to college, I’ll support whatever decisions he makes.

Narrator 1: Matt Bushland.

Matt: In ten years, I have about two things: one, she’ll either be seeing by then ’cause they’ll have found the gene replacement and she’ll be doing really cool things, like she’ll be playing softball and she’ll be really active, or she could be blind and we would just be like helping her and she would still be like a great person. I just like think to myself and like maybe I’ll whisper to her, “One day you’re going to see me, Mary Rose, one day.” And I just take her and I hug her as hard as I can.