IT'S ENOUGH
Having a child with compromised physical, cognitive and neurological function means forever setting new tasks and raising the bar on expectations to support her development, growth and independence.
Everything takes so much time, but I dare not get swept up in the illusion of linear time keeping ⏰ God no, I’ve seen and experienced too many times how warped time is. What can feel like a life time of striving to achieve something, once achieved, feels like it was just a heart beat.
Everything has to be taught, like a skilled craftsmen imparting valuable knowledge to an apprentice. At times, there’s a desperate yearning to ensure the new skill is handed over in the most profound way.
And then I must surrender. Over and over again. For she will take my wisdom and churn it into her own glorious tapestry that will weave its way this way or that. She is her own garment, after all. Only a fragment of my thread will remain, but I’ll know, in secret, what it took to get her there. To get us here.
It’s a constant work in progress, a never ending cycle and effort- ‘What can I empower her with now?’ Underlying this is gentle simmer of hope rested in knowing that the more she can do, the less I have to do.
I carefully choose when and what goals to introduce for new skill development. And then patience … my god the patience that I’m called to embody as that alchemy lands.
It's a delicate process of support and a meticulous and arduous journey to success. She epitomises effort, consistency and what's possible when you put one foot in front of the other over and over again. I guess, I do too.
At times, the effort required and the slowness of success triggers the shit out of me.
My nervous system struggles to cope with the, ‘What happens if she doesn't get it? Who'll do it for her if I can’t’?
I’ve been sick a lot this year, each time slapped me down so harshly I was forced to let go of the conditions I’ve put on myself to show up for her. Too tired, too unwell, to do anything but the bare minimum.
Being rendered incapable of caring for my little love, whilst still carrying the fear of burdening anyone else with our troubles, brought up all my fears and limiting beliefs regarding her needs. It's been hard. I've gotten angry, and frustrated, at all the things she can't do. Because it means one more thing I have to do.
I wasn’t angry at her. I was angry at myself - for not reaching out for more help. For not allowing myself to drop the ball, to not be so goddamn diligent, so damn good at holding it all.
When I’m well, I can hold it all and a million times more. But this year, I haven’t been able to hold any of it.
And somehow, we survived. It turns out, all that striving got us to this point 13.5 years in, where the bare minimum is enough.
It’s going to take some time for that to land in my heart because of what it’s taken get here. New pathways need to be wired into my brain. My mothering role that has been etched with the words carer, therapist and advocate before, in and after it. At times I have felt more that than mother.
So we are in an unfolding; there is a sense of unbecoming. From what has been, into something new.
It feels like I have to let it come undone so we can be put back together to live the next 13.5 years with a little more ease. A little less striving, a little more living.
Ah yes, living. It’s enough.
x
