Be gentle, kiddo.

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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.

 

The blank slate

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I used to have my own blog, years ago. Dad used to give it props and send readers my way and it gained momentum and became fun for a while. I even won an award, once. I think that was my downfall, I began to feel pressure to write content for other people’s approval instead of for the sake of my own joy. The blog became an empty space, rarely updated, all motivation lost.

Then, after a journey into sobriety after decades of mistreating myself, creativity came back and I felt the craving to write again so I began a new blog, this time not hosted by dad and not shared to anybody I knew at first. This gave me freedom to write whatever I wanted, but funnily enough the content was dull and not up to potential. I shared the site’s address with dad after a while and he’d call me up, shocked at what I’d written or telling me he was worried about me. It wasn’t worth it, so I shut that blog down too.

Now here I am again, with an opportunity to write. I wonder if anything will happen, or if it becomes another neglected pet like a fairground goldfish which loses its shine once the weeks wear away. Dad used to tell me to write about the clients I work with. I’m a care assistant so the material is certainly there, like the lady with dementia who keeps giving out to me for repeating myself or the girl with cerebral palsy who curses like a sailor or the gentleman who lives in the 17th century house whom I’m pretty sure is a ghost.

I’d love to write a book, a horror story which incorporates some Irish folklore and dark humour with inappropriate exaggerations as is the storytelling way in Ireland. I want to write it about the Hellfire Club. This is an old ruin at the top of Montpelier Hill in the Dublin mountains, built by a chap named William ‘Speaker’ Connolly in the 1700s and taken over by an extremely amoral man named Richard Parsons who was known for his shady love for the dark arts and hedonism. A faery fort which originally existed on the site was used to build parts of this building, thus cursing it for eternity. People would go there to gorge on booze and sex and murderous black magic, servants and animals were sacrificed in horrific rituals and stories tell of visits from the devil himself to join the craic. It’s a real place, with a real history and is right up there on the list of Ireland’s most haunted places.

It’s always fascinated me, the Hellfire Club. My dog hates it. She won’t go into certain parts of that ruin and likes to sit and stare at a blank part of the wall in one of the upstairs rooms and bark at it nervously. It’s a nice place to bring children for picnics, but I’d love to visit it at night time, alone. I’m sure I could make a story out of it, involving a love-triangle, a few restless spirits and an upturned sod.

But life is busy and there aren’t enough hours in the day for now, the restless souls I deal with now are very much alive and in need of feeding and the bills won’t pay themselves and I have a lot of repeating to do.

 

The Late Grandad

Head Rambles Posted on by

This is very hard to write. I know it’s his style to be funny but all I can find is sadness.

Grandad died this morning (he never liked euphemisms) after a week in the hospice. He declined gracefully and great efforts were made to ensure he wasn’t suffering in any way. He got visits from dogs, and had a few days sitting outside in unseasonably warm weather listening to birdsong before he became too weak to move around. There was no drama, he just doffed his proverbial cap and slipped away while I slept beside him on the couch bed.

I’m not sure what’s going to happen to this site, I’d love to preserve it, and to know if he’s still hosting sites for others knowing him as the kind fella he was. Perhaps you could let me know by way of a comment what I can do, given that I only have a fraction of his internet knowledge. I feel very lost without him. I miss him tapping his feet to his folksy music and making me listen all the way through. I miss the way he kept banging on at length about esoteric things, and telling me about nice things that people do.

Thank you to all of the readers who’ve followed dad on this site and in real life, you gave him wonderful motivation and a powerful meaning to his life.

I hope that as I lay there this morning, drooling on my pillow as he left, that some of his soul spilled out into mine so I can keep him a little bit longer.

Love from

Daughter

 

A fresh start

Head Rambles Posted on by

paradise

noun

par·​a·​dise ˈper-ə-ˌdīs 

ˈpa-rə-ˌdīz,

Synonyms of paradise

: eden sense 2

: an intermediate place or state where the souls of the righteous await resurrection and the final judgment

c

: heaven

2

: a place or state of bliss, felicity, or delight

Yes, time for a new category to replace that C one that has been haunting this site for far too long.

I genuinely feel that life has changed, and changed so radically it’s hard to describe.

I hope to be writing a lot more about Paradise in the times to come. Incidentally, it’s not a religious thing though I can understand why the religious may want to grab the word for themselves.

My Paradise has a much simpler definition..

It is the opposite of hell.