Bearable Weight: The Truth of Being a Parent Carer

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This, my friends, is a photo of five double portions of bolognese sauce ready to go in the freezer: it is REALLY fucking boring, isn’t it?

Yes, yes it is. Now, imagine that your child will eat only spaghetti bolognese four or five days of the week, and the other days he eats meatballs or burgers. Imagine the massive amount of time spent in my kitchen preparing mince products. FOR THE LAST FIVE YEARS. Before that it was poached eggs on toast for two years.

I once told someone that if your entire life flashes in front of your eyes when you die, mine will be about 2 seconds of random great and terrible stuff, and 30 seconds of standing in my kitchen cooking spaghetti bolognese listening to Steve Lamacq. And that is a sad, sad, state of affairs.

That is commitment. Parenting is commitment. Parenting, if you delve beyond the reams of written words about how great and fulfilling it is, is also fucking boring at times. You spend an awful lot of time doing shit you totally don’t want to do. There are actual people out there who are willing to admit this in print, and I am about to join them. There are also people willing to admit that parenting terrifies them, it stifles them, it makes them feel less themselves and they sometimes want to run away. I will join them as well.

My oldest, Leo, is autistic; I am his registered carer. I haven’t come across many parents of autistic children admitting that parenting is boring, stifling and terrifying online. Apparently, we are all blessed with special children by God because we are special parents. We are stoical in our “suffering”. People don’t know how we do it, but we know, we do it because we are Warrior-moms and Superdads and we are just the best. 

 Let me now use this space to say that, from where I am standing, us parent carers being superhuman is all bullshit. I feel like gouging my eyes out with a rusty spoon every time I read such crap. And there is a lot of it. It alienated me when I started reading about the experiences of other parent carers, it made me feel I must be a terrible parent because I felt trapped, weighed down, alone and saw with panic my previous self slipping away, and I wanted her back. I wasn’t gifted a special needs child because I was an exceptional parent, I felt like just a normal, flawed human doing this because I had no choice. 

I have this attention deficit brain you see, that skips from one thing to the next, stopping to obsess and hyper-focus, before moving on to the next thing. I was one of those people in my teens and twenties who would crave a life characterised by adventure, success and happiness, but always seemed to manage to self sabotage as soon as I was anywhere near it, preferring to keep floating around in a constant state of FOMO. Inheritance incoming? Get on a plane and piss it up the wall, don’t put a deposit down on a flat. Loving, supportive, fun boyfriend? Run.  Studying something you love? Get incredibly stoned for the whole three years and scrape a 2:1 at the last minute. Commit to a career path? Pah. There are so many possibilities that I couldn’t possibly choose just one.

That is what it looked like pre-children. At the moment it mainly looks like a houseful of dying houseplants left over from a houseplant binge I went on six months ago, an inescapable urge to go out and get obliterated and not come home for two days, a neglected dead sourdough starter in the back of the fridge, a stack of unfinished books, and a searing sense of failure. There’s an ongoing huge, massive battle between fear of commitment and accepting of one’s lot being constantly battled in my house and brain.

And this does not a good, content “Warrior Mom” make.

The day after I found out I was pregnant with Leo I was petrified; the weight of the discovery was immense. I drove to work and bawled my eyes out so much other drivers were staring at me and I couldn’t see the traffic lights changing colour. How the hell was I going to do this? I could feel my world shrinking before my very eyes. But I did it, because I had to; this was my reality now.

I had Leo; this was all going to be okay. He was an easy baby, I was good at this, and I loved him very much to boot. I had Olive three years later, she was an amazing tiny spark. I got on with life. I used to panic sometimes, and wonder how I got here, but early motherhood eats you up, you don’t have time to think of the next shiny thing around the corner. I was also dealing with the breakdown of my relationship with their father. I was in a drudge, and when I came up for air four years after Leo was born, after leaving his and Olive’s Dad, I didn’t recognise myself anymore, and I wanted to bolt. I wanted me back.

But I couldn’t this time, could I? I had two children, and around this time Leo’s differences were becoming very, very apparent, and I discovered autism. Shit got real and I had to stay still. Things were so hard for so much of the time over the next five years I didn’t have much time to think about anything else but work, parenting, all the big and small stuff that comes with dealing with Leo’s additional needs, so I got depressed and accepted my lot.

 But as things started to even out a little and the pressure started to come off, my fear of commitment started putting its head above the parapet again. It was an anger, a frayed temper, a gentle press of the self destruct button, it was an occasional bitterness about what had happened to my life and a shard of jealousy piercing through my thoughts every now and then.

I have had the pleasure of being introduced to Jude by a mutual friend recently. Jude is in her mid forties, has four children, three of whom have left home, and lives with her nine year old son Romario. She is autistic and her son received his diagnosis a year ago. Jude has been a parent carer since she was twenty five, as one of her older children had complex health needs as a child. She tells me she “was a free spirit, with a busy and crazy life” before she had Romario, but that the structure and routine he needs doesn’t allow for that now. Because she is autistic she tells me she also struggles with the sheer amount of people she has to deal with as part of her caring and advocating role for her son, and this makes it even harder for her.

Jude craves escape too. She misses her old life, but tells me she has found the positives; “He’s slowed me down, made me more present… I never really realised the flow of life before. In some respects I am a better parent for it than I was for my older children”. She has learnt to appreciate her new way of life, but still needs her means of escape, and for her it is writing. As a black, female screenwriter, playwright and director, battling the obstacles that face other black writers, and throwing herself into her writing is where she finds her inner self and her escape now. When she gets time off she is more likely to lock the door and write furiously and order takeaways for days rather than try and recapture her previous busy, crazy life. She seems fully committed.

I am afraid to say I am not sure I am quite there yet or ever will be. My palms itch and my legs twitch at the thought of turning onto the motorway slip road around the corner from my house and just driving anywhere, or just upping and going on holiday, or applying for a job far away. I take my time out when I can get it and watch others move on and move away, or flourish in their careers, or even just do all the stuff with their partners and / or children I just can’t do due to a lack of funds and Leo’s needs and struggles. And it makes me angry at times, it hurts, it makes me catch my breath occasionally and mutter bad words when I am buttering my tenth rice cake of the day (Leo’s other food obsession). It makes me feel like my life hasn’t turned out anywhere near how it should have.

But I know I am learning an important lesson, that commitment can bring good things.

I read Milan Kundera’s The Unbearable Lightness of Being in my early twenties. I have never returned to it, because the often misogynistic tone of his writing doesn’t sit well with me, but the ideas explored in the book, and the strong imagery created, has always stayed with me and comes back to me sometimes. The word commitment is never mentioned in the book, but Tomas, the main character, battles commitment valiantly and stoically for years, fucking his way around Prague; believing he is a better person, a more intelligent and tortured and special person than the norm, for his need for freedom from weight. His wife Tereza suffers whilst he does this but sticks by his side. Oh, they also have a dog who loves them both doggedly, just to hammer the point home.

Commitment is viewed as a weight and to be pitied, and non-commitment is viewed as a lightness; higher and more lofty than any base, common heaviness could ever be. Tomas discovers in the end that the weight of commitment is a necessity to really understand life fully, that the lightness of life without it really is unbearable.

I am trying to learn how to commit to my children and my life with grace, and how to commit and keep myself truly me at the same time. This is because I can feel the wonderful solid warmth of the love being created through the act of committing and the safeness my children feel and the love they reflect back to me. They need me, and although sometimes that stifles me, it is making me a better person, and I will never leave them as long as they need me here.

Now, whilst I am stacking up those 5 tupperware containers into the freezer of an evening, what keeps me sane is knowing I am going out dancing on Saturday, that one day when the kids are older I will have so much more freedom to go and be non-committal to a thousand other projects and dreams, and that without this chance to experience the real joys of commitment, I would have missed out on a lot of life experiences. Stuff that makes me a better, braver, more resilient person, and stuff that feels really good too; namely trust and love from my children, flowing three ways always.

To break that love and trust just isn’t possible for me, it benefits us all. Even if it is sometimes uncomfortable, especially when family life is often rigid and routined in order to make a certain someone feel comfortable and safe. But thank fuck I have been given the chance to experience this commitment, and all it brings.


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Written by Kerry Mead

Kerry is 43 and a long term resident of Bristol. Music obsessive, book obsessive, social butterfly, escaper of responsibilities, self diagnosed with Attention Deficit Disorder, full time single parent and registered carer to her oldest child who has autism, she also squeezes in two part time jobs; one in ad sales and the other in communications for a local charity.When she isn't busy with that lot Kerry is a writer. She writes about parenting and neurodiversity, and all the other stuff too.

You can check out her blog here.