What you don’t see


Sometimes I wonder if, as a mother and an advocate fighting to be heard, I should stop sharing only the photos and videos of my son’s joyful smiles.

I wonder…if I shared photos and videos of my son retching multiple times a day, vomiting if I’m not fast enough with venting his PEG, to show just how intensive caring for him is, would the public better understand?

I wonder…if I shared a video of my son in a full tonic clonic seizure, turning blue, requiring me to hook him up to O2 quickly all while managing his body and his airway, would the relevant government officials finally grasp that life hangs in the balance every single day in my home.

I wonder…if I shared photos of my son’s multiple scars from multiple operations and multiple pressure sores, would you who are reading this begin to understand what he’s endured on his journey so far?

I wonder…if I tagged health advocates, including doctors and nurses, on social media in tweets of such photos and videos, would it finally drive home to them that carers like me are indeed providing skilled, nursing level care around the clock – but with no rights, no pay, no pension, and no time off – all the things they passionately fight for for other health care providers.

In the past, I have shared such photos and videos, as have other families like mine. I’ve found it’s either met with pity or avoidance or even with accusations of seeking attention. Guess what? Families like mine do want attention, but not for pity. We want, no strike that, we NEED to be noticed so that reforms can happen, so that we can finally receive equality, fairness, and justice, and so that we can finally have the level of services required to have a quality of life on par with the rest of society.

Is is wrong to ask for such things?

No, of course not. And so, there will be no smiling, joyful photo attached to this blog piece.

Scar from spinal fusion and the crease around his waist which was created by being forced to wait 17 months for an *urgent* spinal fusion while his spine crushed down on him. That permanent crease requires constant care, opening up and bleeding on a frequent basis.
Wounds that a mother can’t heal