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How parenting makes managing my disability a challenge

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My partner is woken at 3am by whimpering. And then a cry.

He jolts up out of bed.

Within a few seconds he's making comforting shhhhs and rhythmic pats. Speaking gently. Soothingly.

He goes to the kitchen, boils the kettle and returns, careful not to make too much noise. Following the same routine he followed last night and the week before that and the month before that.

He sits patiently under the ambient light of the lamp knowing that he might be awake awhile, that he probably will be.

We both wake the next morning to a cry, again.

This time it's our eight-month-old. This time it's a cry of joy.

She looks energetic, happy, refreshed when we go to pick her up.

And so she should. She's the only one out of the three of us that had a full night's sleep.

And so our day begins.

My partner goes downstairs to join the first of an endless series of zoom meetings for his day, and I go upstairs to change the first of an endless series of nappies for mine.

Still in a bit of a lethargic haze, feeling like I've just come out of battle.

Because I have.

PTSD doesn't discriminate. Mum, sister, nurse, artist, doctor, lawyer, wife.

When an episode hits, it just hits.

Parenting and managing my disability are both full-time jobs

Having a baby is the best thing I've ever done.

Having a baby is the worst thing I've ever done.

My life is now divided into Before Baby (BB) and After Baby (AB).

My life used to be divided into Before Trauma (BT) and After Trauma (AT).

I don't know which one I prefer. They're both full-time (plus) jobs. They're both relentless. They both require 100 per cent of my attention and energy 100 per cent of the time.

I know. The math doesn't add up. So most days, one of them has to give and most days, it's the management of my disability. Because you can't keep a baby 70 per cent alive.

Having a baby has absolutely compromised my ability to manage my disability.

We thought we were ready

We had prepared. BB (Before Baby), my partner and I had prepared.

We had researched Mother and Baby Units and had referrals drawn up and ready to go.

The grandparents were on standby to do the meal drop/grocery/I'll-watch-baby-while-you-shower thing.

My appointments with my psychiatrist were booked in advance.

We had a shared note file on our phones of 'resources' to use during an episode.

The 'village' was briefed, prepared and on standby. We were ready.

But then two things happened:

  1. 1.The baby (actually) arrived, and
  2. 2.A pandemic hit.

And we live in Melbourne so within moments, our resources and grandparents and appointments were gone.

It works — at a cost

In retrospect, I feel intensely stupid. My partner does too.

We sit and think to ourselves, how on Earth did we expect we would be able to do all the things we did BB to manage your disability and keep you well, AB?

Where the f*ck did we expect the bottles and naps and nappy changes and purees and twinkly stars and wincey spiders and farms of MacDonald would slot in?

We don't have answers, even now.

And I suspect that if we had actually considered every bottle and nappy and puree and nursery rhyme BB, there wouldn't be an AB because we wouldn't have had the baby at all.

Because doing everything, all at once, doesn't make sense on paper.

Logically, it doesn't work. And it shouldn't. But somehow, in practice, it kind of does. At a cost, however.

Reclaiming my needs is not just about me

I stand in the shower tonight and cry.

I know it's a very common thing that mums — especially new mums — do, but I'm not crying because I haven't slept or because my baby's thrown a tantrum or because I'm overwhelmed by the baskets (plural) full of dirty laundry and sinks (plural) full of dirty dishes and hallways (plural) full of, well, just dirt.

I'm crying out of grief. That visceral, body-shaking, breath-catching kind of cry where you snot everywhere and feel whatever it is that you're feeling in your fingertips. And toes. In their very, very edges.

The crying forces me to sit on the shower floor and it's only then that I realise that, actually, what I'm doing is mourning. Mourning the luxury of being able to care for myself.

And then I realise that actually, what I'm mourning isn't that at all but, rather, the fighting I've had to do up until now to carve out a legitimate space for my disability.

To have it recognised and accepted and validated. Socially, professionally, politically but also, personally.

And then I realise that actually, that's how parenthood has compromised my ability to manage my disability.

In etching away at my rituals around self-care and the time I have for medical appointments and exercise and sleep, it's also eroded the value of those things and, albeit indirectly, the legitimacy of my mental illness.

And that's why I'm sitting on my shower floor, full-body crying.

Right now, in this very moment, I'm confronted.

Confronted by the sheer relentlessness of parenthood, the futility of all the work I've done around my disability in its face, but also, and perhaps most alarmingly, by the notion that if I want to raise an accepting, open-minded, open-hearted and informed human, I somehow have to find a way to renegotiate and reclaim my needs.

Because if I don't, then I'm going to be reinforcing to my child that a disability does make you lesser, and it does make you different, and that you do have to change so as to fit in with the circumstances around you.

And that's simply not true.

Kat Kats is a writer and theatre maker living in Melbourne.

Source: ABC

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