I have spent the past 11 years fending off misconceptions that I must hate my life and that I must be angry or depressed about my son. Often those misconceptions come from people without direct experience with disability – sometimes I explain, but mostly I just continue to live my life as authentically as possible, sharing what I feel and don’t feel along the way.
People don’t make this assumption about me out of nowhere; online and in real life, I witness varying degrees of anger, outrage, sadness and helplessness expressed by caregivers of children like Owen. And honestly there’s little here I can relate to. (Except maybe the sadness. Yes. I can relate to the sadness…)
Here’s the objective truth: I have a son with multiple severe disabilities. The obvious ones are physical and are SO very obvious that they mask any cognitive ability he may or not have. Because there is no way to get specific responses out, I have no idea how much he ‘knows’. He is of course even more limited by his environment – his interactions are primarily with caregivers and because he is deaf, his only opportunity to engage with language is when someone signs directly to him. (Hearing children grow up surrounded by spoken language and develop language recognition long before they actually speak. This exposure is critical to development, and Owen has not had that as he has not grown up around signing people.) Regardless of his ‘potential’, he can’t do anything and his cognitive abilities are not knowable. I will say that again: He Really Can’t Do Anything And I Have No Way To Tell What He Understands.
Now here’s my subjective truth: I accept these circumstances are real. And I accept (after a few hard-scrambling years of various interventions) that right now, especially as a single mom with my own business and another child to support, there’s nothing I can do about it. And I feel peace in relinquishing the fight against something I know I will never conquer.
I have said ‘I accept’ and sometimes it’s heard as ‘I accept my son for who he is and I wouldn’t have it any other way!’. Would I have it another way? Sure I would. I would live in a world where I get a full night’s sleep and I am not on constant alert, waiting to see if my son is going to die today. But that’s where my wishing ends because anything else is even more futile. I don’t wish my son could talk or walk or eat or hear. I don’t try to wish away his disabilities. Wishing is a waste of time. Like guilt.
Let me be clear: I don’t relish or savour Owen’s disabilities any more than I relish or savour Angus’ stubbornness or occasionally tyrannical demands. Life sure would be easier without any of it. But I can’t separate out Owen’s disabilities from who he is fundamentally. His disabilities completely mask anything below. So I take him at face value and love and accept it all.
I hear other parents’ bargains, offering up organs or limbs or eyes or their very lives if their child could do this or be relieved of that. It’s noble and righteous I suppose, but where would it get me? I choose to not engage in those conversations, with myself or others, because it takes me out of reality. It’s like a child’s negotiation with god – and it leaves me feeling empty and heartbroken and desperate. There’s nothing more depressing than wishing things were different.
I also believe this in terms of pain and suffering, and death and dying.
My child experiences pain and suffering, some days more than others. I am doing everything I can to relieve it – it’s a very human and proper impulse and one I feel deeply… but still, he has pain and he suffers. So what am I supposed to do with that? Engage in more bargains? Take on his pain as my own? Know that it’s never going to be enough but still struggle on, searching and experimenting? The rest of my journey is letting go of this self-imposed judgment and expectation (and resisting our society’s seductive opinion) that in order to be a good mother to my son I must take up the good fight and never ever stop.
Even the pain and suffering – I don’t waste any time wishing they were gone. I strive instead to support Owen through this life the best way I know how. I do what I can, which is a lot, and work to let go of the rest. By ‘let go’, I mean stop the searching for solutions that simply aren’t there and trust that what my child needs most is a calm, non-reactive presence.
This, finally, is a goal I can meet.
(photo: Owen and Grace)