I Parent a Child With a Disability, Here's Why I Can't Die

Worrying about what will happen to my son after I die clings to my soul and rears its head when I least expect it. A constant reminder the relationship I have with motherhood is a world apart from that of my friends. Even between my boys, my responsibilities differ more than I ever imagined or wanted them to.

Here’s just three reasons why mums like me feel we can’t die:

1. No one knows my boy like I do.

When Harry walks upstairs or bounces and flaps in the lounge while I make dinner in the kitchen, he makes a very soft sort of snuffle. I can tell from the tone of that snuffle whether he is smiling or anxious. I know whether he is T minus 5 from a meltdown or whether he is tired.

I can tell from the way his bottom lip drops a teeny amount (others wouldn’t notice but I spot it early) that he is about to cry — so I pull him to me and try to calm him before it happens.

I know when he is lying in bed if he is fast asleep or if he is lying with his eye open and his grin wide thinking of…well that’s anyone’s guess. I doubt he’s counting sheep and is more likely to be plotting the next day’s biscuit barrel raid. But the point is, I don’t have to talk to my boy to know these and so many other things. I just know. And I can’t teach anyone else how to know. I can’t write a “Harry manual” to pass on to whoever will care for him when I’ve gone. There will be no snuffle interpreter, no facial recognition expert or sixth sense awareness. Yes, there will be people who love him and look out for him. But most likely there will never be someone who knows my boy like I do. When I die, I take that with me. As much as I love that special bond I have with him, I would give anything to be able to pass the baton on in my absence.

2. He may never stop needing me.

The vulnerability of an infant is heart warming and temporarily affirms your role as the protector. In time, as your child becomes an adult, that vulnerability is replaced with experience, knowledge and a passion for the world which is unfolding before their eyes. They no longer need you in the same ways. It’s heart breaking but amazing at the same time. I know one day I will stop being the oracle and protector for my “typical” son, Oliver, as he might turn to friends and girlfriends to advise him through his life. But that might not happen for Harry. I don’t know if he will form a true friendship or have a romantic relationship. Maybe it sounds harsh and unfair, but it’s also realistic, and I have found at times realism has served me much better than optimism in my journey. My boy may always need his family. The people who understand him, love and protect him. My boy may need his mum but in truth, I need my boy so much more. The only thing I fear in this world is what will happen to Harry when I have gone. So I simply can’t leave him.

3. He might forget me.

This belief is rooted purely in fear rather than fact. When Harry was assessed for autism, his report showed he had recognition for three adults: me, his dad and my Nan. My boys were my Nan’s world and she was with them almost every day. She adored them and they adored her. Even now, three years after she passed away, Oliver will still cry and tell me how much he misses her. Harry seems oblivious. He can look at a photograph and does not show signs of recognition. I say her name with no reaction. To me, it feels as if she never existed in his world. That makes me incredibly sad to think the woman who made him her reason for clinging to her own life for as long as she did (93 is a grand old age) might not be in his memory. It also terrifies me the same will happen to me. Could I become a distant memory in time of someone he was once obsessed with and made him laugh and smile before he moved on. Of course I could be grossly underestimating my boy, but one of the struggles of nonverbal autism is the guessing game for me. I have not figured out a way of knowing what Harry remembers or forgets; only what he shows me. When I die, will I still matter? I don’t know.

But here’s the thing. While I don’t ever want to die, I’m not sure that I want to live forever either — to outlive my partner and our children. To watch technology ravage our world and the futuristic films we watch now become a reality. I talk as if it’s a possibility (that’s too much science fiction for you) but my point is, I don’t even know what I want. I’m just scared. I’m terrified of leaving my boy in a world which all too often judges and mocks those who they don’t understand. The ones who are different. The loners and the vulnerable. I hear horrific stories of groups befriending adults like the one my son might become and subjecting them to awful things. I push them to the back of my mind and tell myself that things like that don’t happen to families like mine (doesn’t everyone say that before it’s their reality though?)

For now, I live here… today.

In the present, I focus on the beauty of my boy and our relationship. I work with his school to build his skills. I introduce him to the next generation when they see him and stare or point, unsure and sometimes afraid of the boy with one eye who jumps and flaps. I am using social media to introduce my boy to the world — to desensitize them to his differences. I am trying with all I am to educate others on the power of seeing children like my Harry with their hearts and not just their eyes. If I can do that and know that I am leaving him with an army of people who love him and “get” him (albeit not in the same way I do) then maybe, just maybe, when the time comes it won’t be quite so hard to leave my boy. Until then, you’ll find me googling the elixir of life and bathing in formaldehyde.

Follow this journey at Our Altered Life.

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