Keira’s Wish Comes True!
Keira spends much of her time looking through the window to the world outside. She doesn’t like to leave the comfort of her family home. She doesn’t like the crowds, they confuse and overwhelm her.
Keira was born with a very severe form of Arthrogryposis Multiplex Congenita (AMC). It makes her joints and muscles extremely weak, and her joints don’t bend or straighten the way they’re supposed to.
Now 11, she has fought through many surgeries in her young life. Since she was a baby, she’s worked with doctors, therapists, orthotists and several hospitals, just to shift her legs into a position in which she’s able to sit in a wheelchair without anything extraneous. They worked to get her knees to bend, her feet into the correct position, and to get her hips to sit without pain, without fear of breaking.
“Some moms count surgeries. I don't have the luxury of being one of those moms,” Keira’s mother, Chaney, said, knowing that there have been too many to count and more will always be in her future.
It’s been a difficult road for Keira, to get to the place she is now. She just spent nearly five months in casts after her last surgery, something her mom said is not really unusual for her.
“She’s spent a few summers in casts,” Chaney said. “But this one, we hope, was the last.”
Keira’s strength and progress have truly been miraculous. Her legs are now facing forward. Her feet are on her foot plates on her chair. And, she looks terrific.
“We’re just really grateful and excited to celebrate.” Chaney said.
And Keira is celebrating with a wish, and a unique one at that. She chose to turn her backyard into her own personal oasis, filled with one of her favorite things – birds.
Keira is legally blind, but she does have some vision up close. She likes to sit by the window and see the sun shine through, feeling the warmth of it on her face. She likes when there are storms, watching the trees in the yard wave back and forth in the rain and wind. Her favorite though, is when the birds fly by.
She likes to watch them whiz by, visiting the small bird feeder outside. She likes to listen to their sounds, music to her ears. She and her grandmother have studied all the bird calls and they’ve become experts at identifying them.
“It’s very calming to her, to sit out here or by the window and just be with the birds,” her mom said.
Keira and her mom spend time sitting outside, seeing which birds visited them that day. Keira is non-verbal, but she answers yes or no questions with head nods and shakes and has a communication device. When they hear bird calls, her mom lists all the birds she can think of for her, and Keira will pick the right one.
“Keira is really unique. She is a smart child, but it’s really hard to get to know her,” Chaney said. Her face is paralyzed, so she can’t make facial expressions and sharing emotions can be difficult. “That yes-no, getting that out of her is so important, but it’s such a strength with her. Being really patient with her helps.”
Sadly, some people aren’t patient with her, leaving her a bit isolated and exasperated. She can tell when people won’t be patient with her, her mom says, when they won’t meet her halfway.
“It’s frustrating... part of that is teaching people how to help Keira, and she can teach them also. But we have to help her realize that not every person is the same, sometimes we have to have patience with other people too,” Chaney said.
Her limitations made choosing Keira’s wish a challenge, but also something fun she and her mom could focus on together.
“We spent a long time talking about her wish together, Keira and I,” she said.
They worked on identifying the things she really likes - sitting by the window, the bird feeder. In the end, Keira decided to makeover her backyard into her perfect sanctuary, filled with birds.
She uses a power wheelchair to move around, so she wished she could get outside better and have more space. That meant extending her family deck to give her more room to explore and to get closer to the birds. She chose a swing that is safe for her, to swing side-to-side (the only way to swing, Keira told her mother). Umbrellas provide shade to keep her cool. And most importantly, a bird bath and bird feeders to bring the birds to her yard.
“I wonder if we’ll hear birds playing around in it?” Chaney said, on the day of Keira’s wish. “I’m very excited for her. It’s gonna be great.”
On her wish day, Chaney invited Keira’s friends from school and the teachers who are with her every day to help her through the many challenges of her condition to celebrate with them and to make Keira’s day extra special.
We unveiled her new backyard, complete with chimes for Keira to hear the wind and supplies to ensure the birds keep coming back to keep her company. Keira spent much of the day outside as her new oasis was set up, and she’s looking forward to spending more the same way.
Keira’s new bird feeders and bird bath bring her favorite visitors and, so far, she has identified woodpeckers, blue jays, mourning doves, goldfinches and more. As you can see, she spends her afternoons gently swinging and listening to the birds, a true escape in her own backyard.
As a single mom with two adopted daughters, Chaney said that the wish was a blessing to their family, it gave Keira something she couldn’t. As she focuses so much on their care, she doesn’t have as much time to focus on unique experiences and joy-filled moments like her wish.
“This is invaluable to us. It’s wonderful to have something new and different for her to do,” Chaney said. “I’m so glad for her to be able to come out here, to breathe fresh air, and to do something she loves.”