I’d cleaned the floor, a proper clean this time. Dust bunnies had been swept away and that sticky plastic residue formed by dried fluid from the feeding pump along with its sickly sweet smell had been scraped away and disinfected. Old dusty syringes used to administer liquid epilepsy medication through feeding tubes were scooped from underneath the bed and boxes of nappies and wheelchair padding were pushed back, away from curious little fingers and kicking feet. A large, brightly coloured foam wedge was plopped onto the newly cleaned floor in front of a pink toddler with little hairy explosions for pig tails. This was new. She watched and waited.

Usually, her big brother was out of sight, up high on the bed. Sometimes he was in his wheelchair which was too complicated to climb and explore. Today however, he was being lifted down and placed beside her into her world, tummy side down on the foam wedge and finally accessible. His head, neck, arms and shoulders draped over the higher end of the wedge, his nine year old feet at the lower end where his stubby little toes flexed and un-flexed randomly. The idea of this wedge was to encourage neck strengthening, and his incentive to lift his big scruffy head today was a toddler armed with brightly coloured musical instruments and percussive toys. We were about to become a loud little room.

I engaged the little girl with play, encouraged her to rattle and bash her toys and made a raucous music with her to the amusement of her big brother who lifted his head and grinned and laughed, his lips produced long strings of drool which stretched to the floor and got smeared around by his chubby sweeping fingers. He made happy nine year old sounds, but had no capacity to use words or ask for more of one thing and less of another. He was happy just to exist in that moment, his head reaching up and flopping down depending on his strength reserves. We had roughly twenty minutes of this activity before his neck muscles would run out of power causing his head to flop permanently downwards in exhaustion.

Soon, the noise making capacity of the loud little toys lost their power and the toddler’s curiosity turned to her brother, whom she watched with a tilted head. She babbled sing song words to him and waited for him to reply. When she paused, his nonsense babbling stopped too and they remained frozen together, both waiting for interaction. The toddler tried again, tried leading him into conversation and became more visibly confused that these normal methods of interaction weren’t working. She took his slobbery hand in hers and opened out his fingers and placed a rattle in his hand which he held loosely, unable to grasp with his lack of motor control. She took another rattle and bashed it off the floor loudly, showing him how to operate it. He squealed loudly with delight at this sound and waved his arms about, the rattle he loosely held went skittering across the floor.

The toddler grew concerned at this point. She got up, and poked her brother in the ear. Then she stuck her finger up his nose. Her brother winced, and sneezed, and flopped his head down to rest for a moment. He felt the weight of the toddler as she climbed onto his squishy bottom padded with a moderately soaked nappy and began to drum on his back, soft at first, then harder and harder.

“No no, be gentle, kiddo.”

She climbed down and resumed her place in front of her brother and poked him again, becoming cross with him now. She shouted in indignation and lined toys up in front of him. She showed them to him one by one, and told him it was his turn. He stretched and flopped, stretched and flopped, but didn’t interact with her and didn’t reply. A tantrum started to build and I watched, unsure as to how to handle the incoming emotional storm. Instead of a tempest though, the storm subsided and the toddler relaxed into a pose of frustrated acceptance. On her face grew an expression that I’d never seen on a child’s face before. She was learning that it wasn’t that her brother didn’t want to play with her, but that he couldn’t. She was finding acceptance in the fact that she had a useless brother. She cried the saddest tears I’d ever seen and my heart broke for her.

But then she learned over time.

She learned about charitable love, love that wouldn’t be returned, love just for the sake of love. And it wasn’t useless at all. She’d sit beside him as she grew and sing the new songs she’d practiced at school and read stories to him from her books. She blew bubbles for him to gaze and shout at and pushed teddy bears underneath his limp arms to cuddle. She’d hop up on his lap on his wheelchair when he’d come home off the school bus and ride into the house and help me take off his shoes and ask him about his day even though she knew he’d never reply.

That’s the gift that a disabled kid brings into a family. I’ve seen it in other families, the capacity for the more able-bodied neuro-typical siblings to show an otherworldly level of empathy to other members of humankind, and a sage understanding of how the world works and the happiness that can be found in the littlest of things. It can’t be found in a Disney Movie or taught in a classroom, it’s a beautiful understanding that grows from the ashes of burnt expectations.