The thing with raising special needs kids in a time that defines success by the car you drive or the label on your purse, is a constant struggle between the the burn to see the “who” they want to be and the “what” they want to do with their lives, shut the mouths of those who ever doubted…versus living authentically, the life that I truly value, which is one that says, “Who cares what everyone else thinks? Be YOU, be free.”
I’m the girl, who, when I get told, “you can’t”, accept it as a challenge, to prove that indeed, I will. Having three kids who are labeled as “disabled” stirs the same determination to see my three prove the world wrong about deafness, about disability, and about the need to be like everyone else. This journey has humbled me though, in ways I less anticipated. I’ve scrutinized the labels of ‘beauty’, ‘worth’, ‘wholeness’, ‘ablility’ and many more, and breathed in the very breeze that whispers, “You’ve had it all wrong.”
This journey, this early on, has found me torn between being willing to fight and push and do whatever it takes to see my three be offered opportunities equal to that of their hearing peers. On the other side I err, hoping that I am not tarnishing their sweet unique essence by the culture of conformity and modern day perception of success. Whilst with care, we could move forward navigating what works for one, the real challenge is protecting this delicate balance simultaneously with three very different girls.
When does the struggle to see them have access to subjects like Physical Science (not a subject accessibly to any child in a school for the Deaf in South Africa, and no mainstream school readily accommodates South African Sign Language) compete with one or more of my daughters’ acceptance of the possibility that she was not made to pursue any future that requires Science? For some reason I find myself wrestling my own world view; that to be successful, one needs to pursue a career that epitomizes “success”. Why are these old rags of deception so hard to shrug off?
I want to be the mom that says, “Follow your heart, be what you want, don’t think about money, or even proving anyone wrong.” But especially when everyone is watching (well at times, it sure feels that way) a mom can’t help wanting their child to shine.
But what if their stage is not the same one you have the front row ticket for?
Whilst we struggle to read and spell, yes they are only five (see I struggle not to have to justify this). Whilst we may struggle in areas of literacy development (let’s not pretend that it’s not going to be harder for a profoundly deaf kid) I find myself sometimes feeling the weight of this journey. Whilst friends with hearing kids say things like, “After a few months, everything clicks and they are just reading and reading.” I’m like, “I’ll dance with joy when we reach that place.” Reach it we will, but with a late identification at the age of three, it will be harder, it IS harder. I teach my kids that they can do anything, not because I want them to prove that they can do anything, but because I don’t want their own thoughts about themselves to be their shackle.
So I take two steps back, and “imagine the worst”. Imagine they don’t get great grades at school. Imagine that their literacy is fine but not brilliant. Imagine that they don’t earn massive salaries or have many letters depicting several degrees behind their name. Oh, Deaf people sure can do all of that, but let’s imagine that mine don’t.
If I am sitting at the edge of my chair in the front row of the story of “success” as defined by this world, I might be disappointed. But if my time and energy is spent on having them see that they are loved beyond measure in the now…the place where they don’t speak eloquently, the place where they get 2 out of ten for a spelling test, the place where they read “purple” as “pink” (10 seconds after I have made the letters P-I-N-K take the shape of a crimson friendly pig to aid memory), the place of not yet having “made it” in the eyes of the world…if in this space of perfect imperfection, they believe that they are complete and more than enough just the way that they are, they will see mom standing in applause, at the core of who they are and not what they do, or how they perform…a place of truth and sincere contentment for all.
I want THAT.
I couldn’t care less about how orally eloquent they become. I want them to know that they are loved. I don’t need them to make us prove to the word that “Deaf people can”. They have nothing to prove, they are enough at this very moment. It doesn’t matter if the “experts” are sizing up the choices that I’ve made for them. What matters is that they are happy and at peace with themselves. It matters that we enjoy each other, that there are no empty spaces deep inside. We complicate life so much by sticking our tacky labels of approval onto things based on the ordinary norms of today.
This certainly does not only apply to deaf children, hearing kids are continuously told that who they are is not enough. The plastic values of society, leave us chasing the things that don’t matter at the expense of cherishing the now. Having being privileged with the task of mothering kids who have shaken everything in me, I have had to reevaluate everything that I thought to be true.
Girls, if you want to study Science, I’m willing to sweat it out with you. May you know though, that nothing you do, nor achieve, not a single word you might say clearly or discriminate precisely, not a single grade you may or may not make, will ever change these 4 facts…
You are worth fighting for.
You are complete. Spread your wings, but not to impress anyone or prove anyone wrong; do it for you, and the One who moulded each feather.
You are loved …I celebrate you in exquisite completeness of the “who” you are, NOW.
You are accepted and crowned with unique magnificent purpose by the One who thought you were worth dying for, long before anything you said, signed or did was “worth” applause.