Put your own oxygen mask on first

The cost of saving myself

Tomorrow I am going away for a few days without my children. This is a new thing, seizing an opportunity to spend time away from them in another country, and logistically and emotionally it is tricky to navigate. Days spent under new skies, staring into eyes that still feel like a miracle, losing myself in laughter and conversations that weave and dive…all of this joy is bookended with the challenges of my wild mothering.

I don’t subscribe to mother guilt, not really. I understand the rationale behind the oxygen mask phrase, that it’s impossible to care for others if you don’t care for yourself. I try to adhere to basic self-care rules: eating healthily, not drinking to excess, regular exercise, a few hours sleep. I think I’m ok at meeting my own needs in terms of day to day functioning (although family and friends might disagree and wish I would slow down and breathe a bit more).

The bit I find harder is the business of actually living.

For the last few years it is has often been all that I can do to keep my head, and those of my children, above swelling tides. We have been drenched in illness, unkindness and misunderstanding, the watery version of fighting fires. That’s not to say that there haven’t been moments of magic - I wrote a whole book about it, about seeking something special in the everyday, subverting the domestic into a wild, creative life.

But despite the beauty, these recent years have often been about making the best of a life fraught with challenge. There have been so many times when people have looked at me with pity, occasionally horror, when I tell them what I am juggling. Most of my energy has been poured into ensuring that my children have a childhood intermittently sprinkled with stardust, one that will not be defined by the sad times.

I hate it when I hear people say that you can only be as happy as your unhappiest child - I’ve fought hard to make this not true. When you have a psychotic daughter who no one will treat and three other little girls tugging at your heart, you cannot afford to be as happy as your unhappiest child because the other children are looking to you for direction and hope. It’s not easy caring alone for poorly kids and I feel grateful to be tentatively tiptoeing out of the woods.

But I am still a full time carer. I spend more hours each month than I would like ordering prescriptions and standing in queues at chemists. I still metaphorically roll my eyes at the ignorance surrounding autism and the impact of that ignorance upon our lives. The admin and meetings are frequently overwhelming, and I feel desolate some days about the lack of educational provision and how that affects my ability to work. But things are a little easier now and it’s time to spread my wings.

I’m just finishing reading Alexandra Fuller’s latest memoir, Fi, about the aftermath of the death of her son. She’s one of my favourite writers and Fi is a rugged, mystical, philosophical read. Fuller says this about mothering:

‘…mothers should not exist in a fiction of pope-like infallibility, Hallmark perfect 100 percent of the time. That is not the perfect mother. Mother love is always selfless, but it’s not always self-sacrificial.’

She said this before her son died and she thought she had all the time in the world, so I’ve taken it slightly out of context. But the point is that this is what we should be aiming for: a life lived with our children, doing our very best for them, but still holding onto ourselves and not perpetuating the myth of the perfect mother.

When you are the only adult in a household, and your children have complex additional needs, it is harder to cling onto your own identity because you are so wrapped up in the caring and the othering of the mothering. When you live a life on the edge it is more difficult to escape it - there’s an analogy here about clifftops and ropes and getting tangled, and that’s what trying to extricate myself from my everyday life involves. There is a huge physical and emotional workload involved in making my world bigger.

Firstly, two of my children are autistic, so any change in routine is potentially problematic and causes huge anxiety. Holidays for my family do not look the same as holidays for many other families, they are not always a fun prospect. In the lead up to me being apart from them I do a lot of managing of emotions and preparatory work. Last night a small daughter stood next to my bed like a ghost until I sensed her presence and nearly jumped out of my skin. I pulled her close to me and whispered reassurances in her ear until she felt safe enough to sleep. The same will probably happen tonight, and I expect I will lie awake for a while afterwards wondering if I am doing the right thing in raising her anxiety levels by leaving her.

Resilience means something quite different for autistic children: they are forced to navigate a world that is often unkind to them, so their ‘resilience' is already stretched to breaking point. People sometimes tell me that she will get used to it, and that it is good for her to be pushed out of her comfort zone, but I have learned the very hard way that this is simply untrue. There is a delicate balance between nudging her levels of discomfort and breaking her. Every time I leave her I hope it will not take long to put her back together again when I return.

Secondly, I have four children and they do not usually all stay in the same place when I am away. Logistically this means a mess of diaries, schedules, trains and pick-ups by car before I can escape.

Finally, and this is the most complicated bit, I have to weigh up the stressful lead-up to a break from my children, the challenges that sometimes occur when I am away and the inevitable fallout on my return with the benefit of child-free time. The whole exercise feels like a frantic dance - in fact I will probably spend some of my time on holiday dancing frantically in the kitchen trying to get out of my worried head and into my body. I will shed the mother for hours at a time only to return to my phone and find a missed call from a daughter that makes my heart race. I will tell myself that I am not too much, that we are not too much, remember my friends telling me that I am the prize (more of that in this post), that I am not too much but exactly the right amount.

I dress myself in tiny dresses and paint my eyes black in an attempt to escape the mother, but of course I am missing the point - I am simply a mother in a tiny dress and eyeliner. It is impossible to ever extricate myself entirely. Next week my holiday will be spent with a group of people I have mostly never met. I wonder who they will see? My heart will be full of four daughters, but somehow there is room for someone else and it’s all mixed up like a mysterious love potion I don’t know how to bottle.

As I type the end of this post, my little daughter is tucked up in my bed behind me. Her words won’t come and her eyes are pools. I know this is because tomorrow I am trying to make my world bigger. It makes me wonder why, when I am putting my oxygen mask on first, it feels so hard to breathe.