Every once in awhile on this journey with a child who has a life-limiting condition, something happens to trigger a flood of emotion. It usually comes like an unexpected deluge from the sky – except this sudden wave of emotion comes from deep within the intentionally well-hidden centre of our being. You see, dear reader, parents like me keep great amounts of pain tucked away where no one can see it…and, as a matter of self-preservation, where we ourselves often can’t readily find it either.

But every once in awhile, something happens.

This morning I awoke to find it had rained hard overnight. Very hard. The front drive was flooded. Had Brendan Bjorn not still been on what is now approaching a month of being bedridden due to the pressure sore once again opening up, I would not have been able to get him out of this sorry excuse for a home. Only a few minutes later, I looked out the back window and discovered that the septic tank had been flooded out with all the rain, so the sewage (I’m being polite here) was literally streaming across the tarmac in the back garden. The smell wafting through the house – even as I type this, as the issue isn’t yet resolved – is nauseating.

But this actually isn’t what triggered the flood of emotion. 

It was something a friend on Twitter wrote under my posted photos of the scene.

“You really are effectively a prisoner there“

Yes, yes I am, I thought to myself. And with that, the flood of emotion came rushing at me. I am a prisoner here in many ways – as is Brendan Bjorn and as is Declan. We are stuck in an unfit, unsafe house with nowhere else to go AND I AM FURIOUS about that fact! Having tried unsuccessfully for a year to find a suitable, disability friendly home to rent with HAP, I’ve given up any hope of renting.

(Once that floodgate opens, be ready for other emotions to escape their confines.)

I found myself standing in the doorway of Brendan Bjorn’s room this morning, crying. I looked over at my beautiful, precious angel and cried. Simply put, I hurt. And I hurt for so many reasons: the feeling of being a prisoner with no other housing option; the feeling of being trapped inside a house while my son is bedridden, leaving me once again housebound, caring for him 24/7; the feeling of being alone…no, scratch that – it’s feeling lonely…as I try to do everything on my own to keep a household functioning all while trying to keep one son alive and out of pain and the other son happy and able to reach his full potential without suffering the side-effects of our often challenging journey; the feeling of being overwhelmed as I look at the 6 foot high shelf full of Brendan’s daily medications and supplies which I go to countless times a day in my caring of his fragile self.

Simply put, I hurt. 

I know that tomorrow is a new day, and with it, there may be great joys, good news, and new reasons to smile. But for now, for this moment, parents like me can’t go against that tidal wave of emotion once it has found its way to the surface. All we can do…all I can do…is ride that wave until the water calms.