When I had a baby, one of the things I expected was that my world would contract while our little girl, Amelia, worked out how to live outside of the tightly confined space of my body after nine long months.
Nothing can really prepare you for the intensity of that newly contracted space as the changed dynamic of a family of two adults adjusts to life as three, including one small person who is completely defenceless and totally needy.
But the thing that got me through the life-changing chaos of those early days was the promise of growth, of progress – of the eventual expansion of that changed world we now occupied. Its limits would open out to include old experiences temporarily shelved or new ones we had yet to discover.
Expansion could mean anything, like us being ready to go outside and take a walk with our baby in the pram. Or feeling able to sit down at a café and order a coffee while (fingers crossed) she slept. Just 10 minutes, not long, to feel like moments of the old life could be incorporated into the new.
During the first year, progress included things like visiting people or taking short trips together. Our first holiday was a driving expedition across the state for two fabulous weeks. Amelia was seven months old and apart from the logistical challenges and the cold weather, we created some of our best family memories on the road.
The world of our family grew at about the pace you would expect – just fast enough to adapt to the challenges of each main stage. We imagined that this expansion would just go on and on. And hopefully, it would bring more SLEEP (it didn’t).
Our ambitions for growth extended to things like going to the zoo, the circus, the movies, or that brilliant outdoor production of The Wind in the Willows performed in Melbourne’s Royal Botanic Gardens every summer. Amelia would join other children and follow Toad, Rat and Mole down the River Thames.
Silly things, I guess, but they’re the stuff that parental dreams are made of, at least for us. You picture sharing magical new events with your child and it’s only a matter of time before you get there.
But it’s not. Not for us, anyway. Before Amelia turned three, I thought for sure we were on track to growth and progress but since then (and with the escalation of her autistic behaviours) our world has been steadily contracting again, even where seemingly trivial things are concerned.
It’s not exactly like the first few months of Amelia’s life, that almost suffocating isolation of early parenthood, but some days it’s not far off.
Even ‘easy’ activities like going for walks to the park, or actually being at the park have become fraught with danger and the promise of failure.
Last weekend the sun greeted us upon waking so we thought, ‘why not try for a walk outside and see how we go?’ We jumped into the car and headed to a lake area with a lovely walking track and playgrounds at either end.
But we didn’t get too far. About 100 metres actually, in about 40 minutes of movement in large, frantic semi-circles punctuated with frequent tantrums while fellow families streamed serenely past on bikes, scooters or just on foot, ever moving forward while we stayed in one place.
The ease of their walking and forward progress, this evidence of how different their lives are to ours, made me feel desperately alone.
If I do manage to get Amelia to a playground (usually by car for sanity’s sake), she will invariably become anxious or angry about some indefinable thing and so we have to leave. It’s like she’s suddenly forgotten how to just be at a park, how to play on the swings and slides and enjoy herself.
The zoo (like any busy, public place) is a nightmare venue to take Amelia and I have tried it several times. She doesn’t really understand how she’s meant to behave or what she’s supposed to be looking at. Such a shame for a girl who loves animals so much.
The sights and sounds seem to overwhelm her auditory and visual senses so we cover little ground before another meltdown kicks in and our departure becomes long overdue.
I used to visit my Mum frequently to break up the stress of the days spent at home, and Amelia always enjoyed this time with her beloved Nan. Now she becomes highly fearful and angry at the mere suggestion of going there so I’ve had to cross that safe house off our list for the time being.
If I manage to convince her to go there, Amelia will begin insisting that we leave as soon as we have arrived and repeat this request incessantly into my face or by urgently curling my hand into the Auslan sign for home until I acquiesce. You can see it’s hardly worth the stress.
So, for the most part, the world has contracted once again to the boundaries, nay the limits, of our family home. The walls have closed in and sometimes it’s hard to breathe. Sure, we can enjoy the garden together, the lovely outdoor spaces when the weather allows, but some days that doesn’t feel like enough.
It’s school holidays right now and those weeks are by far the worst. Not for reasons you might expect – I love to have Amelia with me and to slow our routine down to a lazy jog rather than the frenetic sprint it usually feels like to get to kinder and the like. We make our own fun with paint, play dough, cooking and silly games.
No, what makes me feel so bereft at these times of the year is the painful exposure of just how small our world is, how limited the opportunities are for being out and about together.
Lots of other families get to plan things like long trips or day excursions or even just walks to the park. They say they’re going to do it and they just go and do it. Idea becomes reality; the run-of-the-mill activity or the special childhood dream event happens and the photos are added to the scrapbook.
The novelty of this is like a curio I’m peering at through a glass cabinet – I can see it but I can never reach out and touch it for myself. I’m told that things will get better and our world will expand once again but I can’t afford to create more fantasies that are beyond the capabilities of my daughter to fulfil.
It’s not fair on her and it just breaks my heart.
[For TR, who’s in the trench with me and I wouldn’t have it any other way.]