Bushland Family: Mary Rose, 18 months, Leber's Congenital Amaurosis (LCA)
Bushland Family Video
Transcript of Bushland Family Video
Narrator 1: A photo of a mom, dad, and 5 children. Then, home video of a baby girl on a pink blanket.
Mom: That a girl, Mary! Hello, Ms. Mary Rose.
Narrator 2: When a seemingly healthy Mary Rose Bushland arrived shortly before Christmas 2005, parents Patty and Dave were elated to welcome child number five. But shortly after developing an eye roll, captured on this home video tape, tests confirmed Mary Rose would likely be severely visually impaired for life.
Narrator 1: Home video of Mary Rose, her eyes rolling to her extreme right.
Narrator 2: Patty recalls her reaction to the devastating news.
Patty Bushland: It was, "Oh my gosh, Dave, oh my gosh, our baby is blind, you know, and she's never going to see our face." You know, all the things that would go through anybody's head if you think your baby's blind, all the things she's not going to see were pretty much thrown in my face right then and there.
Narrator 2: The diagnosis of Leber's Congenital Amaurosis, or LCA, a rare, genetically-caused condition, sent the Bushland's into a period of mourning and uncertainty.
Narrator 1: Dave Bushland.
Dave Bushland: I feel bad, I'm angry at the world, why did this happen to me, and then you realize this isn't happening to me; this is happening to my daughter. And then you go through this series of guilt, feeling, why am I upset over this? why am I the one feeling sorry for myself when it's my daughter that has the visual impairment? She's a little baby, she doesn't know she's visually impaired. She wants her daddy and mommy, and when you realize that, it helps you start to recover.
Narrator 1: Photo of Mary Rose, in pink glasses, sitting in her mom's lap.
Narrator 2: Patty was filled with questions.
Patty: How do I do this? I guess I just had this, you know, quest for knowledge like okay, what's the next step? What do I need to prepare myself for in raising a visually impaired child?
Narrator 1: Video footage of Mary Rose and her older sister, dancing in the living room.
Narrator 2: Initially, each of the Bushland children processed Mary Rose's diagnosis differently. Their sighted daughter wanted to do everything to help, but their youngest son Danny became withdrawn. The reaction of their eldest son was a complete shock.
Dave: Then we got a call one day from the counselor at school, and this was probably maybe a month after we found out about Mary Rose, and she said, "I just want to let you to know Jason went through a box of Kleenex in my office crying about his sister." But he had never shown that to us, because he was trying to be strong for us.
Narrator 2: Like so many parents of visually challenged children, the Bushlands had no roadmap to negotiate this foreign terrain. They had trouble connecting to other families. The turning point came when a relative finally found another parent whose child had the same condition as Mary Rose.
Patty: I literally hung up in the middle of the message, called her, and that phone call was my first time really feeling hope. Had I gotten that a little bit earlier, maybe I would have gotten that hope a little bit sooner.
Narrator 2: Since that fateful call, the Bushlands have become strong advocates for community-based support. With backing from corporations and foundations, they started a local Arkansas chapter of NAPVI, the National Association for Parents of Children with Visual Impairments. They also joined forces with the Arkansas School for the Blind to establish this kiddie camp, which drew parents hungry for connections.
Narrator 1: A photo of the camp group.
Dave: At the end of the day, I can also, maybe to some extent, hopefully help somebody else who's going through the hellacious process that we went through, and if we can just make it a little bit better for one person, then that's a good thing.
Narrator 1: The Bushland siblings, sitting outdoors.
Older sister: How does a birdie go, Mary?
Narrator 2: Mary Rose's siblings are adjusting better now and delight in spending time with her. When she attended the kiddie camp, they gave up baseball playoffs, and other activities, to interact with her and her new friends.
Dave: It's nice to know that my kids are being brought up, because of their sister, not to look at a child and say, "Oh that's a blind baby; let's feel sorry for it." They go and they're playing with, you know, that little child just like they'd play with any other child and I think that's a huge positive, and it makes you proud as a parent.
Bushland children: (Singing) With a woof woof here, and a woof woof there...
Narrator 2: In July 2007, Mary Rose turned 18 months. The Bushlands are relieved that she has not developed other medical or learning conditions in addition to her blindness, but Patty admits she often feels the need to defend her progress.
Patty: And even today when I bring her to the doctor for like a year checkup or whatever, any time they go through that developmental milestone list for me—with me, for Mary Rose, it's literally me saying, "Well no, she's not doing that, but that's because she's blind, you know?" And I keep saying that over and over again and I wish there was a different developmental milestone list for visually impaired children, you know?
Narrator 2: The Bushlands resist any temptation at sheltering Mary Rose, taking her on family trips and giving her plenty of encouragement.
Narrator 1: Photos of Mary Rose on the beach with her siblings.
Narrator 2: Having a visually impaired daughter has opened their minds to a world of possibilities.
Dave: You know I'd like to say hey, she'll be involved in music. She may want be a cross-country runner. I told Patty that I'd like to see her get in the pool and become an Olympic swimmer. And I don't look at her as, here's my visually impaired child. I look at her as, here's my youngest daughter.