Sometimes, my son and I get stared at as we walk through a shopping centre or down the street of a town. Other times, people turn away, diverting their eyes from…what? From a reality they cannot comprehend? From something they fear could happen to them?

Don’t turn away.

He is beautiful.

Sometimes, even family and close friends distance themselves from us – “us” being the parents of a severely disabled child. And sometimes they say things that should have been left unsaid. “You ought to put him in a home and just get on with your dreams, your life.” Worse yet, when a family member says, “If I was pregnant and had known my baby was going to have such extensive brain damage, I would have aborted it.” Yes…yes…I heard that one for myself, and it is emblazoned on my mind, always there to remind me that some people cannot  cope with challenges beyond what colour to paint their nails. Bitterness remains, but it fuels my drive to help change people’s misguided perceptions of individuals with disabilities.

Don’t turn away.

It could very easily have been your child.

Sometimes, I want to bury myself under a never-ending pile of blankets on my bed and not poke my head out of them for days. But instead, I stuff that desperate feeling, along with the hurtful, truly ignorant comments such as those above, into that place in my heart where darkness reigns. And then I close the door to that dungeon while I put on a brave face to get on with the day ahead of me. My two sons: my world. They are what keep me going. The energy of a healthy, bounding 8 year old. The extensive, constant needs of a gentle 12 year old with a fragile, failing body that houses the soul of an angel. I hold him in my arms as often as I can, though it is not as much as when he was younger, smaller, and far healthier.

Don’t turn away.

Look into those eyes of lovely innocence.

Sometimes, it is the government that turns away. The very same government that is to be serving the people of the country, especially those most in need. Can they, too, like the person walking by us in the shopping centre, not bare to look into the eyes of a child with such profound needs that they instead divert their eyes and ignore those needs? Is it because they, too, cannot comprehend this reality? Or do we dare ponder if it is because they believe that there are those who deserve, and those who do not?

Don’t turn away.

They deserve the best quality of life possible, just like you.

And the parents, like me, who are struggling to survive on every level imaginable, whose bodies are aching and falling apart, who wrestle with depression and anxiety and exhaustion daily, who no longer have a retirement fund to count on in our old age – which is approaching all too soon…what of us? Do you see us? Do you hear us? Do our cries go in vain? Or is it just too convenient to also turn away from us while turning away from our precious, vulnerable, totally dependent children?

Don’t turn away.

We, the carers, also deserve the best quality of life possible, just like you.

I lift his body, day in and day out, 12 years now without fail. Pain yes, but the pain matters not. It must be done. For one day, he won’t be here to light up my world, and that knowledge serves to remind me in the cruelest of ways that what matters most in life is not fame, fortune, status or the latest trend. No, those things, like the pain, matter not. This, the pure love of a child who trusts me to care for his every need…this is what matters.

I wipe the drool from his mouth as he smiles at the sight of me, and my heart is filled. Time and time again, it is filled with unimaginable, unconditional, love for him.

My child.

Don’t turn away.