Right from the beginning he preferred the path of least resistance. After having food delivered directly to his tiny stomach though a tube in his even tinier nose, and then enjoying the relative ease of feeding from a bottle, my son refused to nurse. Latch on, suck twice, give up. He won that battle, eventually, but the war rages on.
It shouldn’t surprise me, then, that we have come to this place. And yet I find myself unprepared.
I’ve long said that one of the gifts of having a child with a disability is that it distills my job as a parent to its essence: Prepare him to live in the world. Preferably as a happy, fulfilled and kind human being. The disability complicates my mission even as it clarifies it. For some things the learning curve is steep and, at times, it’s been easier taking a slower route and letting him progress in his own time. And now I fear that I have failed him.
Puberty has come to our house, bringing with its onslaught of hormones that aching need to belong, the one that walks hand in hand with the absolute certainty that you never really will. Add to that the all-encompassing otherness of actually being noticeably different from your peers and frustration and anger follow. And so it is that my sweet little boy, the one who seemed blissfully unaware of his difference, is fading away.
The young man he is becoming, one who I’d hoped would fall in love with words and other pursuits of the mind, is all about the physical; sports of every kind catch and hold his attention like nothing else. He pursues them the best he can, but his reality sometimes falls short of his dreams. In his imagination, he is tall and strong and capable, able to run fast and jump high and be and do with an ease he may never know. The wasted muscles of his right leg and the inability to properly control his right arm tell him a different story than the elaborate narrative in his head. Sometimes what he wants to do doesn’t come easy.
This is the wall we have slammed into.
Despite his limitations, he’s not struggled much in his life. He’s an only child and an only grandchild and as such he’s been showered with attention and things. He’s been indulged by his extended family even while we push him slowly toward independence. Perhaps we haven’t pushed him enough. Other adults in his life—doctors, family friends, teachers—have been generous to him, maybe feeling the need to smooth the way for a smart, charming little boy who straddles two worlds: “normal” and “disabled.”
In other words, he’s not had to work much for anything.
But time moves forward, children grow up. He’s becoming more and more aware that life, for him, will be more challenging in some ways than his friends’. But instead of using this fact to make him stronger, he surrenders. He gives up.
I have not done my job, despite my best efforts.
He is in a place I have never been been, treading uncharted waters.
It is time for me to surrender. It is time for me to ask for help.