Her younger brother squeals with delight, grabbing La’Niya’s attention. She watches him eagerly, lovingly, as he plays with their other two siblings. They run after each other, their voices disappearing as they round corners in the house. Growing louder as they come back into view, La’Niya rocks back and forth with excitement. Anytime she’s around her younger siblings she has a huge smile on her face. She can hear everything; see everything. She knows what’s going on and is always engaged with her environment. But she can’t get out of her wheelchair to run, or jump up and down, no matter how much she wants to. La’Niya is trapped inside her own body.
12 years before this, La’Niya lay in the NICU fighting for her life. Following a complicated delivery, La’Niya was born with visible disabilities and dangerously underdeveloped lungs. Because of her chronic respiratory failure, she was immediately put on a ventilator. Doctors gently told Danielle that her daughter would likely not live to be 6 months old. There was nothing for Danielle to do but wait, and mourn that La’Niya’s life would be taken from her before she even got to live it.
One night as Danielle sat next to her tiny daughter as she fought to stay alive, she asked herself, ‘Why am I crying so much? Do I want her to be perfect?’ She observed her daughter. She was still here. More importantly, she was still fighting to be here. Every second was a choice. She could give up because it was hard, it hurt, or she was just tired. How much does a newborn know about resiliency, the grit and stubborn will it takes to fight to stay alive?
She had every opportunity to quit.
But that moment, La’Niya chose to take a breath. Then she took another one. Danielle wiped her tears away and smiled. ‘No,’ she thought. ‘She’s already perfect. She’s perfect for me.’
That night Danielle and La’Niya made an unspoken pact. Maybe all La’Niya would get would be 6 months, maybe less. Or maybe, she would get more. And if she did, they would see and do and experience as much as they possibly could.
None of us know how much time we have. Few of us have had to fight every day just to live to see the next. Fewer still have to overcome the obstacles associated with Arthrogryposis, with Microcephaly, with never being able to walk or breathe unassisted. But La’Niya’s life is an example. She demonstrates what it looks like to do as much as you can, with what you have, where you are.