“Liam has a neurological disorder called Tuberous Sclerosis. It’s a lifelong condition. There is no cure and no treatment. Children with this condition may suffer from epilepsy, significant developmental delay, brain tumours and autism.”
Nothing can prepare you for the unreality of this moment. Even after fourteen years I still remember clearly the doctor’s sympathetic face, the sickening yellow painted walls of the hospital room and the weird sensation of drifting out of myself and viewing the scene as a kind of semi-involved spectator.
Even though Liam had been having epileptic seizures at the rate of around 20 per day, and despite having been in hospital with him for a week while doctors ran every test imaginable, my optimistic brain was still able to cherish a hope that everything would be all right. Nothing serious could be wrong, surely? That sort of stuff happened to other families. You saw it on the news or on current affairs shows, read about it in the papers and thought, thank heavens that’s not us! But now it was us, our life derailed, our son disabled.
But still the news wouldn’t sink in. Still my kind, thoughtful brain attempted to shield me from the impact. No, it whispered, it can’t possibly be as bad as they make out. This will all turn out to be some dreadful mistake. Liam will be fine, he’ll be one of the lucky ones, the ones who don’t have any intellectual impairment or brain tumours or autism. It will all turn out fine. You just wait and see.
My brain was right. It did turn out fine. It just depends what your concept of fine is.
If I had known back then about the journey that lay ahead I don’t think I would have had the strength to get up every morning. Because Liam is severely intellectually disabled, he does have a brain tumour and autism and epilepsy. All my worst fears! And yet life isn’t so bad. It’s noisy and relentless and funny and chaotic, just like life with children always is. Liam now has two younger brothers and they’re loving and compassionate souls, each with a very high level of frustration tolerance. I tell them this will stand them in good stead when they leave home and go to live in a share household.
Sometimes I look back on my early years with Liam and think, I wish I’d known then what I know now. But do I really? What if I had been afforded a glimpse of my son at 14? A boy who still wets the bed every single night, who can speak only in two to three word sentences, who runs straight out onto the road while my back is turned, who puts his fist through windows when he doesn’t get his way. What a bleak future vision that would have seemed!
But what if I could have seen how loving he is, how hard he tries in a world that must at times be incomprehensible to him? What if I’d seen him participating in the Special Olympics, or laughing in the surf at the beach, or sitting at the dinner table eating with a knife and fork, or stroking my face and saying “Mummy”?
I know very well that I persisted in a state of foolish optimism throughout Liam’s early years. No doubt I missed many opportunities for early intervention. He was not diagnosed with autism spectrum disorder until he was four, even though everyone but me could see the signs. I refused to send him to a special school and instead opted for a mainstream one where it became clear that the educational model was not at all suitable for him. I was simply unable to view my child objectively. The lens of hope kept misting everything over. I am grateful for that. Cold hard reality would have done me in.
Now, years later, the scales have fallen from my eyes. But it took a long time and they fell of their own accord, not torn away painfully leaving bloody scars. My son is going to be fine, and so am I. Not every day, but most days. We’ll muddle along together and have laugh and sometimes a cry and I’ll try not to shout too much and hopefully at the end of it all the boys will look back on their childhood with fondness.
Perhaps this wouldn’t have been enough for me back then. But if I could send a message to my ‘then self’ it would be this: great gifts await you! You will acquire patience in bucketloads, amazing perspective, acceptance and tolerance enough to outweigh any wedding day or Nobel Prize.
Sure, Liam won’t ever be like the other kids, but he doesn’t give a damn about that anyway, hadn’t you noticed? He’s too busy being himself. Best of all, you will learn to be happy and to have a great life with your child. So hope all you want if it gets you through.
Be kind to yourself, this isn’t easy and there’s no right way to do it. No one else can tell you how and there’s not really a manual either. Not one that you’ve got time to read, anyway. Lower your expectations, let the housework wait and accept all offers of help and food.
And give me a call when you come out the other side, we’ll have a coffee. I’m sure we’ll have plenty to talk about.
“A gender-equal society would be one where the word ‘gender’ does not exist: where everyone can be themselves.”*
I’ve always been aware of gender conditioning and actively tried to combat any lingering prejudices or stereotypes in my own parenting, even down to encouraging dolls with my boys when they were little. It’s great to read people writing about gender issues they’re experiencing with their kids. For too long these subjects have been discouraged or silenced. I’d love to publish some more creative writing on this topic, especially if you are struggling with a child who actively tries to move away from gender normative preferences. A society where everyone can be themselves – thanks Gloria for those aspirational words.
* Gloria Steinem