The happy, but simple life of a Trisomy 13 child


My son's life consists of just a couple of primary experiences. One is his interaction with his toys (the definition of a toy is literally any object within arms reach. Oh, and his own saliva counts as a toy!). The other is his interaction with his mum and dad. He lives a happy, but extraordinarily simple life.

I interact with my son constantly, pouring my love and affection all over him. I do this with my touch, and with my voice, in a very similar way to how people interact with their pet dogs. I don't mean to compare my son to an animal; but the message & the style of communication is incredibly similar.

Let me paint you a picture of our relationship, as I see it.

I play with him all the time. I dance with him. I throw him around. I curl up in a ball with him. I lie on top of him. I stretch him out and roll him up. I pull him this way and that. My fingers explore his entire body in sudden bouts of tickles, and then help him drift off to sleep with soothing strokes, pats, and the warmth of my palms on his bony little chest. He smiles as he closes his eyes to sleep; his hands clasping his dummy to his mouth, my huge warm hand resting on his forehead.

He loves to be tickled, kissed, rubbed, picked up, cuddled and bounced around. He loves rough-and-tumble play. He loves to have his forehead rubbed furiously by daddy's rough hands, and his rib cage nearly stripped bare by the always-lurking tickle-machine fingers. He delights in being hoisted high into the air alongside his dad's sharp stubbly cheeks, and kissed all over his beaming face.

My son doesn't care at all how I touch him, he only cares that I do. He doesn't understanding the deep, desperately loving, all-of-my-being-belongs-to-him meaning in my touches, but he loves them all the same.

I also talk to him all the time. I sing silly songs to him, make funny noises, shout and laugh and cry out. I ask him questions, tell him things, wonder aloud with him, and share with him my deepest thoughts about the most abstract of subjects. I tell him I love him, and I complain that he doesn't love me enough. "You hate me!!" I scream with feigned heartache. He giggles at my raised voice.

He loves to hear his mum and dad's voices right up close to his good ear so he can make out their voices. He doesn't understand any of the words, nor does he understand the emotion in our voices, but he knows our voices well, and he clearly takes a great deal of pleasure in hearing them. They are part of the daily sounds of the world around him, and they're one of the best sounds he hears. He loves them even more than his other favourite sounds; the happy and peaceful tunes of the Winnie-the-Pooh musical bear lulling him to sleep at night; the rattling of the rainbow coloured plastic rings as they dance around his tiny grasping fingers, and then fall about the floor around him; and he even loves them more than that wonderful clicking and cracking sounds of the plastic tube toys as his teeth snap over their rough, scarred, delicious edges.

My son doesn't care at all what I say, he only cares that I say it. He doesn't understand the words, nor any of the grammar; he takes no notice of my tears as I confess my love to him, but he takes more joy than I could possibly express in hearing my voice all the same.

My son's life is of the utmost simplicity. He knows nothing of the complicated adult world of complex contrasting emotions, memories, experiences. For him, it is moment after moment of both isolated but joyous play, littered with short moments of tears, frustration, and pain, all of which are brought to a crashing halt by the warm cuddles and bright words of his parents.

To us, we are, of course, his parents. But to him, we are just, "Those people who make me smile, laugh, and sometimes cry, but then dry my tears, and turn my frowns into smiles again."

"Those people who find my dummy when I lose it, who hand me my favourite toy when I can't quite reach it, and who somehow make my belly full when I hadn't even noticed it was empty yet."

"They're the ever-present shapes moving in the background, nearby me each time I open my eyes after sleeping, or close them for a quick nap."

"They're the ones who pick me up and take me to where that big bright light shines in my eyes and warms my skin, where I bounce around and around in a circle, get tickled and stroked, and hear happy voices in my ear and rough kisses on my cheeks until I get too tired and too hot, and get carried back to my warm comfy bed"

Well, I hope he sees us like that. It's possible that, to him, we're just, "those people who are around when I can't find my dummy or toys - maybe they're the ones stealing them from me!"


He is the most innocent being that could ever possibly exist, and I'm quite sure he'll remain so for as long as he lives. He knows nothing of negativity of any kind, except pain; he's quite familiar with that. He knows nothing of gossip, nor harsh words, nor vanity, envy, or hate. He exists in his space, and his space alone. His life is joy, love, smiles, giggles, baths, cries, tickles, cuddles, and bounces. His day is made perfect by just enough alone time with his dragon dummy, and his favourite tube toy magically appearing in his hand as often as possible. He sleeps soundly every night without a care, a complaint, a worry or a regret. He wakes every morning in the same place, filled with the same smells and sounds. And he spends his days as happily and as contented as you or I could ever hope to be.

Or at least, I hope so.


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