I’m struggling you guys. There is a part of me that feels like I’m a broken record. Everything I’m about to say you’ve heard me before. But I can’t, I just CAN’T wrap my head around our situation. Usually, if you’re unhappy with a facet your life you can change it. It’s not always an easy change but change is possible.
I can’t change that my son is disabled. The cognitive dissonance of trying to accept that this is our truth, that this is our life and the depths to which I wish it was not is shaking my core value system. The cognitive dissonance is debilitating.
I struggle with the anger. When I can’t for another second listen to him scream because he’s hurting. I struggle SO MUCH with watching him suffer (I might appear calm and in control in the moment, but I promise you, under the veneer I am a sea of violent emotion). How are we meant to be okay with the pain and the seizures and the vomits?! Holding his little pudgy arms while I apologise over and over as another needle is stuck in his arm. The apologising I do as I force him through another round of physio or therapy. One more time, one more movement, one more I’m sorry as I push him through something he doesn’t want to do. More apologising as I force the button back through his stoma because the button has come out. More ‘I’m so sorry’ as I run my fingers over the cannula scars on the backs of his hands, the tiny tiny scars on his heels from the millions of heel pricks. The millions of ‘sorry’s because he’s uncomfortable and screaming and I can’t tell what is wrong.
My baby suffers. Not all the time. But even when he’s not suffering, when he’s smiling, he’s still disabled. He still doesn’t have the same opportunities in life that everyone else has. And that’s shit.
I’m not asking why us. I know why us. I carry gene for NKH, in the same way I carry a gene for brown eyes and wavy brown hair and skin that tans deep when exposed to sun. Sam carries an NKH gene, and a gene for his long legs and his grin and his blue eyes.
Its matter of fact. It is what it is. And it is SHIT.
But accepting that nature and science have made my son so severely disabled, and as a result this is our life is soul crushing. I love him an unfathomable amount and I can not fix this for him. I can not heal him.
And so I struggle. I’m questioning my life values, and struggling with myself because there are no answers (all the whole smiling and saying ‘I’m fine thanks, how are you?’ in social situations because this is too big for small talk, even if you’re living the special needs life).
This is one of the reasons why I took that posting break. Because it’s all very lovely to have you guys love on my baby, and the support you give us is valuable beyond all price, but when your core value system is breaking, when you’re so far away from your family and your dearest friends (WHY is New Zealand so far away and so expensive to travel between?! Sometimes you just want your Mum, but my Mum is on the literal other side of the world) it’s all kinds of shit.
I’m struggling you guys. There is no clear path. There is no emotional way forward, and I don’t know how to carry this. My son is disabled and I wish to the very depths of my soul that he was not. I don’t know how to align those two emotional opposites.