I think as this journey continues, as I settle into the rhythm of mothering a special kid like A, the importance of documenting our life, of puzzling through each moment, of anticipating every avenue of possibility… feels less. Not that I don’t want to document, puzzle, anticipate. Not that I don’t still do these things, in my own way, less publicly, but the importance… is less.
These days, all of my energy seems to go toward making sure we’re all clean, fed, clothed. Making sure the car has gas, the bills are paid, the dog hasn’t been forgotten about. Making sure I am prepared and focused for work days, CHEO days, therapy days, etc.
And in between, so much dreaming. Wonder. Reverie. So much that is not this. I guess with both kids in daycare, with time passing, there’s space to think about other things. Like making elusive, messy plans around reckless business ideas, bizarre vacation destinations, ridiculous creative projects, even maybe… taking up golf?
Then something small happens. An 8yr old neighbour meets A one day and asks me, “do you babysit this kid?” and I just have to stop and seriously wonder what the heck this life is all about and how it’s all connected and where do we get all of our ideas about inclusion, disability, life… But in the next breath he encourages, “when he gets older he’ll be able to push the wheels!” (of his walker) and I am steadied. We juggle ideas in front of A, about A. No he’s not tired, he’s feeling the wind. Do you know what epilepsy is? That was a seizure – he’s okay. What’s he doing? He’s jumping because he’s excited.
And I wonder what A thinks of all of this, or if he’s even paying attention. I want to write this down so I can maybe ask him someday, about these puzzling moments, about what possibilities for interaction lie ahead. And maybe years from now he’ll tell me, or not. Either way, here we are, two happy dreamers.