Live. Love. Avoid Anvils

You know that feeling when you look at the child in your care and your whole body clenches — when you are overwhelmed by the responsibility in your hands, so you look around for a butterfly or a unicorn to distract you because you can’t possibly face the seriousness of what’s happening?

Well, when you have a child like mine, that feeling has an extra edge. My son’s brain and body have never quite managed to play nice with each other, which has resulted in a spectacular list of diagnoses and a fairly unusual life.

We have spent a lot of time in sterile rooms crowded with primary coloured therapy equipment, people with beepers and other parents with smiles so tight they can send tears back into wherever tears come from. I can find a newly validated medical research paper almost as quickly as a Kardashian bottom pic. I have ninja level sugar-coating-bad-news skills.

As special needs parents, we learn to manage the pressures of our value-added life, fairly quickly (denial, wine, Kardashian arse searches). We occasionally release steam with a whispered I-think-my-life-is-actually-he-who-shall-not-be-named-but-I’m-not-supposed-to-say-that-am-I-? with other parents in similar situations. We split responsibilities within the family to make wrestling the Kraaken more of an adventure than an action film. We focus on what keeps us afloat for today and maybe for a bit of tomorrow.

Most of all, we learn to love. Like, really, actually love. We love through screams and sweats and bad news and changes and medications and decisions and test results and intakes and bodily fluids and and and…

Love is an amazing beastie. It really is what the songs say it is. It’s a thing. An actual tangible thing. An energy, a force, a negotiator, a familiar tuffet on which to be surprisingly unafraid of spiders.

When you have a child with a disability or chronic illness, love is what tells you to take a breath before you ugly cry in the supermarket. Love is what drags you into the shower. Love is what gives you the strength to carry your ever growing offspring, Superman and Lois style out of yet another burning meltdown. Most of all, love stops the responsibility clench from crushing you from the heart outwards.

So picture a woman, deep in that love-fest, dancing with doctors, brain waves and Thomas the Tank Engine. See her distracting herself with social media and TV shows about English people renovating yurts inexplicably poking out of spare corners of inner-city industrial estates. Watch as she watches her life partner decide another shiny life would surely be way better than the one he has.

Kardashian level drama ensues.

In the blink of an eye, I was that woman, with a slightly smaller arse and no income generating reality show to fill in the cracks. Certainly not blameless, but suddenly, completely and possibly irrevocably screwed. And not in a good way.

Adults ballsing up their love isn’t a new thing. The world generally gives you a momentary hall pass and leaves you to deal. It’s a solid strategy. You need time to heal and throw crockery about (literally or figuratively, depending on your temperament).

And then you move on, as we all do, hopefully not making the same ballsing up mistakes in the future. You accept the support of friends in a whole new way and if you are really fortunate, you eventually feel the excellent warm glow of some kind of love again. (Which, incidentally, feels like a grown up kind of Christmas morning and is probably worth the heartache. But I digress. Let me get back to the screwed-not-in-a-good-way bit.)

When you have a child similar to mine, and your marriage ends, it is almost a given that one parent will end up with principal care and responsibility for that child. Mostly, that parent wouldn’t have it any other way. And then, that parent realises that all the welfare and government calculated child support formulas and property settlements in the world don’t make the life space that is required to keep your child AND your life functioning. You need more. Actually, your child needs more.

They need your time. They need your focus. They need your energy. They need pesky things like food, water and medicine delivered on time and in balance. They need fun and support and a very unique level of understanding. They need all the stuff they needed before when someone else was at least making an effort to distract the life shaped sea monsters.

But now, there’s only you to do it. And on top of that, you need to go out to work. And you need to work well, like everyone else.

I’m no mathematician, and maybe if I was I would have a better grasp on the solutions, but with 24 hours in a day and 7 days a week as standard, that’s almost impossible. And I say ‘almost’ just to sugar coat it (like a ninja).

Because here’s the thing. Divorce is between adults. It’s hard. (Thank you, Captain Obvious.) It takes Herculean measures to stare someone you once loved in the face and say hello as though you aren’t wishing their head would explode. Even in the best of circumstances, it is necessary to work exceptionally hard to protect our children from our occasional desire to release the flying monkeys on our exes.

But when you have a child with additional needs, you still really need your ex’s help. And suddenly it’s not unconditional. It’s a negotiation. It’s you in a position of deficit begging someone who doesn’t care to hear your voice, to drop their own needs, put the cape on and take their child for a ride (aka do something really vital for their survival while pretending its a trip to a theme park).

It’s a quadratic equation — long, drawn out and ultimately frustratingly useless.

So, while I furtively reach for my dusty high school calculator, and press increasingly less random buttons in search of the correct answer, allow me to offer some unsolicited advice to you, whoever you are.

Take a deep breath and acknowledge the overwhelming wonderfulness of the love in your life. Acknowledge its function. Give it form. Never take it for granted.

We might not think the adult love in our lives will deplete or morph. We might figure we’ll make whatever work, for the sake of our child, because who wouldn’t, right?

Let me be your Walter White. It probably won’t work out like that, and you may end up desperately dreaming up survival scenarios where you have a fair chance of ending up in a dusty ditch, wearing a white protective suit and goggles… or something. (Sidenote: can you tell I never really watched Breaking Bad?)

If you have a child with a chronic illness or a disability, your love for them is not something anyone should question. And if they do, feel free to set them on fire... inside your own mind, of course.

But, for the love of all things loveable, don’t let the love that made your child be taken for granted. Don’t let it disappear under a carpet of responsibilities and routines. Don’t mistake a clear division of tasks for an I love you. Celebrate your love, even if you don’t feel it right now. Demand it be spoken, drag it kicking and screaming from the depths of your Facebook feed and dance with it. Together.

It may last, it may not, that’s just life. But if you let go of its hand when you are deep inside it, you are likely guaranteeing that your child will be minus a vital Kraaken wrestler in the future… because your love will be a distant, drowning memory for all of you.

That’s when the responsibility clench will crush you — Looney Tunes anvil style.

And if you have a child, especially one with special needs, you know you can not be crushed. You must live forever. You are the Roadrunner. Hopefully, you will be slightly less self righteously annoying, but as I read back on this, I’m not sure I can guarantee that.

Live. Love. Avoid Anvils.

I’m going to get a t-shirt made.

And then I’ll cover it in sugar.