Easter Island

Something we are constantly told as parents of special kids by almost everyone we encounter is this. ‘Make sure you look after yourself. You’ll be no good to anyone if you don’t.’

This advice is dished out readily and in abundance, but, like the slightly-out-of-date dessert your late-night nemesis self just couldn’t resist, it leaves a slightly bitter taste, and the reality is never as good as the idea.

I already feel bad. I feel like a shitty parent most of the time. Adding to my mile-long to-do list with another self-care tick box is not helpful. Also, I know I’m never doing enough. It’s the nature of having a child so complex. I’m constantly thinking of all the things I could be bettering to improve the outcomes for my beautiful boy, and generally for our family, and there’s literally always more. I’m consistently missing the mark, because the goal posts are permanently being shifted. Family life ends up being this crazy pressure cooker of trying. Trying our best to make sure everyone gets what they need to survive.

Let me expand, if you will. Here’s a typical day, in a nutshell.

Wake up. Drag kicking screaming self from safe cocoon of bed. Instantly feel guilty that S has been up for at least half an hour already (he is a big morning person). Feel guilty again that I am not in any way a morning person. Mumble half-arsed response to children’s chirpy pre-7am greetings while muting inner monologue of rage. Express shower. Pad change, administer meds and dress B if S has already left -string bag and octopus spring to mind. Flit between feeding B myself and organising sibling feeding supervision while I attempt other important jobs. Pack B’s lunch in semi awake state. Ensure B’s Epic Bag of Life is sorted (bibs, pads, wipes, meds, spare clothes, blue badge, home-school book). Ensure B does not break himself or anything else in the vicinity. Glance at D and O as they shout goodbyes and leave, hoping they’ve managed an adequate level of personal hygiene that morning. Sign life away on form waved in front of face by youngest child – ‘Don’t worry Mum, I’ve written my name and class and ticked the right box so all you have to do is sign here..’ Clock how much seizure activity is going on, how much food B hasn’t eaten, current mood, and anything else useful for school staff to know. Write aforementioned info in home-school link book.

Attempt to alight bus with B. Unpredictable. Potentially deal with mammoth meltdown as every man and his dog bear witness en route to school RIGHT PAST MY HOUSE. Bundle B onto bus. Feel bad B started his day stressed. Scoop smallest child from house, check she made/has lunch, and half-run, half-walk to school, since lateness is usual at this point. Drop her at gate, crack on to train station, head to uni. Work, lecture, work, coffee.. you get the idea. Squeeze in some B-admin in the not-working gaps of the day - arguing with social care, rearranging medical appointments, sorting carer rotas and payrolls. Standard stuff. Possibly field call from school on seizures or behaviour or eating. Head back on train. Pick up smallest from school. Get back to house to meet B from bus if it’s not a carer day. Re-enact breakfast chaos, but this time trying to make dinner. The keeping B safe whilst cooking tea jumps up about thirty threat levels. Herd kids into bath…. bedtime routine… three thousand ‘one more story pleeeeeeaaasseees’ later. Phew. And once the kids are all in bed there’s still washing to put away, the dishwasher to load, or any number of other tediously necessary jobs to finish.

Anyway, I’m sure you get the deal. Every day is chaos. Breaking and peeing are rare privileges. A hundred things are juggled in fine balance and if one gets forgotten everything comes tumbling down in spectacularly dramatic fashion. How are we supposed to practice any sort of self-care when getting through each day is like wading through mud?

The occasional times we do get some B-free time are bittersweet. It’s great to be able to focus more on the girls. Of course it is. Equally, it feels selfish to take any me-time when they usually get so little of us. We have this window of opportunity to do all the things typical families take for granted, and naturally we want to cram in as much cool stuff as possible. But that in itself creates stress. It’s like this big countdown clock of doom hanging over us. And then comes the guilt. In huge crashing waves. The guilt of being able to enjoy family time when one integral family member isn’t there. In fact, being able to enjoy it because one integral family member isn’t there. That sucks.

Holidays highlight this stuff. Watching other families crack on (pun intended) with their #soblessed Insta hashtags and effing Facebook family fun times is rough if I’m honest. Egg-hunting in our house comprises retrieval of sticky spat-out mini eggs from wherever B has deemed fit to post them. Family get-togethers involve chasing a grumpy B round an unfamiliar environment while scanning for potential spin/smash-hazards and apologising a thousand times for being anti-social. Hence family get-togethers don’t happen. B doesn’t even eat chocolate these days; another stinging slap in the face.

I’m sure there are others out there who feel the same. Solidarity high fives to all you parents who know you’re doing the best you can, but who still feel shitty anyway.

There’s always the chocolate your kid didn't eat.

And there's always vodka.