Making room for life when crisis keeps returning

Some families experience a crisis, move through it, and eventually return to the life they knew before.

And then there are families for whom crisis is something that keeps returning.

There may be periods of relative calm, sometimes beautiful periods where everyone seems to have a little more room to breathe and be themselves. And there may be times when our child is struggling so much that almost every part of family life has to change around what they're experiencing.

When we're raising children who experience repeated crises, we can spend years waiting for things to settle. Waiting for a support to come through, for a nervous system to recover, for school to become accessible, for sleep to improve, for the next appointment, the next assessment, the next stretch of time where our child feels safe enough to engage with the world again.

I understand why we wait. When things are frightening or unpredictable, getting through the day can take everything we've got.

But what happens to our lives when we come to believe that living well is something we'll get to do after the crisis?

When everything becomes about getting through

Crisis changes the way a household operates. We might become incredibly skilled at noticing the slightest change in our child's capacity, their energy, their expression, the sound of their voice, their movement, or the way they're engaging with us. We adjust plans, conversations, demands and expectations because we know that what looks small to somebody outside our family can have a very real impact inside it.

That attentiveness is often necessary. Sometimes it's about immediate safety.

But it can become difficult to find ourselves in the middle of it all. We may stop asking what we enjoy, what we need, what we'd like to look forward to, because those questions seem almost inappropriate when somebody we love is having such a hard time.

Our own needs begin to feel optional, or even completely redundant, and at times, the needs of siblings can quietly be placed on hold too. We tell ourselves we'll get back to them when the situation improves. Often because there simply isn't choice, or the availability of the supports that would allow us to tend to EVERYONE and EVERYTHING. 

Many parents are operating without enough practical support, without reliable respite (or respite at all), and within systems that keep expecting families to demonstrate just how bad things are before anybody will help. In those circumstances, being told to practise self care can feel deeply disconnected from reality.

We don't need another reminder to take a bath or think positively.

We need permission to question the idea that our lives must be entirely suspended until everybody is well.

What could living well actually mean?

I don't mean pretending a crisis isn't happening. I don't mean finding gratitude in suffering or teaching ourselves to tolerate circumstances that are unsafe or unsustainable. And I certainly don't mean we should stop seeking appropriate support.

I'm talking about making room for actual living within the circumstances we're in.

For one family, that might mean changing the way we spend time together. Rather than putting an outing on hold because our child can't manage the original plan, we might find a version more accessible. Or we might decide that being at home together, without the pressure of an outing at all, is actually the better experience.

For another family, it might mean giving a sibling some uninterrupted attention, even when it needs to happen in an unconventional way or at an unusual time.

It might mean a parent returning to something that belongs to us. Reading a few pages, sitting outside, gardening, talking with a friend, studying, writing, listening to music. Not as a technique to make us better at managing the next crisis, but because we're people with interests and inner lives of our own.

And there will be days when none of these things are accessible. Days when keeping everyone safe takes up the entire day and I'm mindful not to turn living well into yet another standard families are expected to achieve.

What matters to me is that we don't mistake those days for the whole of what our lives are allowed to be.

A family is made up of more than the crisis

Crisis can become the organising principle of a family. I know this from experience, and it's something I work at diligently. 

There are weeks where once the children are off to Dad's, I collapse in bed and stay there for a number of days due to whole person exhaustion - mental, physical, spiritual, emotional, complete exhaustion. And of course there's always a cost to whatever we choose.. for me, it's a kitchen waiting to be cleaned or piles of washing to fold while I scroll youtube clips for two days, eating corn chips from bed. But I let it go.

There were years where I *never* had a break. And when I say never, I mean never. Couldn't leave the house, couldn't sleep through the night, spent my days keeping siblings safe from one another, without support. Totally on my own, no family, nobody local to assist and exhausted and inappropriate funding. I can't even begin to express the nightmare of it. 

Interestingly, the only thing that has changed is me. Is life still hard? Exceptionally. I'm still a single parent, still without adequate funding or professionals, still without formal or informal supports and I'm still working at it.

We use ways to begin to know our days through what went wrong, what was avoided, what we managed, and what might happen next. We become SO familiar with monitoring distress that we can miss the ordinary experiences unfolding alongside it.

Our children are still children. They have humour, preferences, curiosities, relationships and ways of engaging with the world that deserve to be recognised beyond the times they're struggling. A child doesn't have to be recovered, regulated or capable of participating in a conventional way before they can experience enjoyment and connection.

And parents and carers are still people. Siblings are still growing into themselves. There are relationships to nurture and interests that are waiting. There's a family culture to build, even when it looks nothing like the one we imagined.

This doesn't mean distributing our attention equally every day. There are times when one person's safety or immediate needs will rightly take priority. The question is whether we can continue to recognise everybody's humanity, including our own, when the balance has been unequal for a long time.

I've seen how much pressure families can place on themselves to make their lives look more typical. A good family routine. A successful school day. A proper meal. An outing where everyone participates. These things can become the measures by which we decide whether we're doing well.

But perhaps the question isn't whether our family life looks like somebody else's.

Perhaps it's whether there are parts of our days in which the people living this life can feel safe, connected, respected and able to be themselves.

There is no finish line we have to reach before we deserve a life

For families experiencing repeated crises, recovery and difficulty don't always happen in tidy chapters. A child can be doing better in one area and finding another area almost impossible. We can feel hopeful and exhausted on the same day. We can make meaningful changes to our lives and still have periods when things become very hard again.

I want to be able to hold that complexity without deciding that every difficult day means we're back at the beginning. My thinking can absolutely bend that way and so I try and observe those thoughts.

I also want to acknowledge that no amount of flexibility or creativity can replace adequate disability supports, accessible healthcare, financial security, safe housing, or real help with caring responsibilities. Families shouldn't be required to invent their own way out of every impossible situation.

But within what is available to us, I think there is something worth protecting.

The ability to notice what brings each person comfort. To make decisions around our actual capacities rather than the life we're told we should be living. To keep some space for pleasure, curiosity, rest and belonging without needing the crisis to be resolved first.

Maybe living well isn't about reaching a point where nothing difficult happens anymore. Maybe, for some of us, it's the ongoing process of finding ways for life to be more than the difficulties we're navigating.

Our children deserve that. Their siblings deserve that.

But bloody hell, so do we.

With love,

Kristy