I never ‘planned’ to have a daughter with a disability.
I don’t even know how to label or not label her. Having a child with a disability does not mean I am all of a sudden equipped with the knowledge I need to advocate properly or understand her.
I am not sure whether I should say “special needs,” “disability,” or just avoid labels altogether.
But I am not on a mission to conquer her disability.
Rather, I want her to be exactly who she is meant to be and spread the delight she spreads.
But I’m still gun-shy. I don’t know the right way to do “this.” I know Macey so well, but that is not enough to know why she reacts the way she does or has the limitations she has.
I think this will be a lifetime affair of me figuring it out. I’ll likely learn what lingo feels right – what fits the political-correctness of the moment, but also what suits the person we want to encourage Macey to be.
It really comes down to something Macey reminds me to do daily and that is to accept each other and the beauty of differences.
I have to believe that strength was given to live through the hardest medical moments with Macey and strength will be given for all the unknowns ahead.
Maybe the only thing I will ever need to call her is “Marvellous.”