A line in the sand….

Have you ever felt like running away? Just dropping everything, grabbing your car keys/travel pass/comfy walking shoes & heading off into the sunset?

I know I have – more so now than I ever did as a child & I’m pretty certain that I would be way more successful at it these days too – given that I am allowed to cross a road by myself* & go further than the bottom of the drive way & have a credit card to boot!

That not withstanding, the actual getting out of the house process within a 5 minute window – without leaving behind bags, keys, medical supplies – would be nothing short of a miracle in itself!

*of course actually having 5 mins peace to be BY MYSELF to enact the running away plan might be a hindering factor…. but if I’m sneaking off alone, I suppose I wouldn’t need half as much baggage (or snacks) as the usual shenanigans dictate when going out en famille? 🤔

Equally however, if I’m running away, I’m NOT leaving my shoe collection behind…. Minx has already called dibs & I wouldn’t put it past her to gather up the lot the second my back is turned & claim finders keepers so maybe this adult running away plan is more difficult than I thought to pull off.

I’m joking I think;

I (on the whole) love my life & know that I’m one of the lucky ones: supportive family & friends, a husband I adore & I’m fairly confident he feels the same (after 26 years together, 23 married – medal or martyr?! 🤣) 4 amazing, incredible, infuriating, fabulous, (some times fatuous) children, 2 daft dogs & a long suffering cat.

In fact as a mere observer, I live a charmed life. I don’t ‘work.’ I live in a beautiful house (the bank own more of it than we do but even so!) We have good food, plenty of it & nice clothes. We have reliable cars, althoughI’m pretty sure just typing these words means I’ve doomed that to 💩

I *may* have a reputation for chugging Prosecco/gin etc like lemonade & coveting shoes (kind of deserved) & handbags that on occasion I’m spoiled enough to receive. So I recognise that I am indeed more fortunate than so many, way ahead of the game.

But appearances can be deceptive as we all know; and whilst I don’t dispute all the lovely, material things I have (& have gratitude for) and I do wholeheartedly recognise that having the love of a good man and others in my life, equally I wouldn’t wish some of the practicalities or heartaches that living in a family with medically/physically complex children & a young person on the autistic spectrum, brings.

The constant stream of appointments, the letters addressed to the parent or Carer of… the endless meetings (or zooms/equivalent thereof during this time of ‘covidageddon’) the never-ending stock taking and ordering of medications & equipment and feeding supplies; the physio regimes & preparation of drugs that Walter White himselfwould be impressed by.

I don’t want to gnash my teeth in frustration trying to rewrite not one but 2 Education Health & Care plans (EHCP) that are so loosely written you could drive a London bus through the holes.

I don’t want to justify why my young people need the support that I’ve painstakingly outlined and have to listen to a teacher, SENCO (special educational needs coordinator) or bod employed by the local authority to tell me there’s no more money in the system; I’m being too demanding, expecting too much. You’re damned right, where my kids are concerned, never mind Tiger King, I’m Tiger Mum.

Then there’s the FEAR

Hyped even more in these “Covid times”

The worries that niggles away every day of parenting complex kids where there’s no benchmark for normal.

Wondering whether we wait out the latest blip at home or if it’s time to “bother” the professionals in hospitals – and that’s another worry – am I that over-reacting parent? Will the Dr’s/nurses label me as “GAD” (generalised anxiety disorder) or think me foolish? More scary still – FII??? (Fabricated induced illness – a real worry amongst the undiagnosed community as this term seems to be bandied around more readily) Have I jumped the gun too soon by rushing in or worse still, left it too late and I should have trusted my instincts in the first place. It’s completely exhausting, overwhelming at times.

Then there’s the bloody beeping feed pumps or sleepless nights because your child is in pain and you are powerless to take it away.

Watching the clock until the next dose of medications can be administered and the hope that then they can settle into some kind of exhausted sleep before the day begins again and you pick yourself and them up, hustle them into uniform, a wheelchair, reassurance that they can make it through the day ahead. A bright (but forced) “you’ll be fiiiiine once you’re with your friends!”

The drudgery of ‘normal’ parenting: washing, shopping, cooking, cleaning, ironing and the times when I really don’t want to debate exactly what I said, when I said it and who I said it too; take note kids: DO as I Say NOT DO as I Do!!

I don’t want to referee another fight, don’t want to help with homework or home school or any permeations thereof. I don’t want to share the raspberry & chocolate mini magnums or the Maom sweeties I’ve secretely stashed.

I am selfish. I want to lie in bed late & get lost in a great book, drink too much coffee (maybe too many 🍹) not answer to anyone but myself, definitely not the phone. I want to watch crap TV, not get dressed if I don’t feel like it.

I want to eat junk food (sometimes) and not factor in how many portions of fruit & veg I’ve crammed into the offspring to try & prevent ricketts, scurvy or whatever else might crop up to (metaphorically) bite them and therefore me, in the arse.

I don’t always want to be the grown up, the responsible one. And yes, dare I say it, I want something of my own identity back too.

I know that above all else I love my children & other half fiercely and ferociously. I do not want (or deserve) praise or recognition for getting on with the hand that life has dealt us but sometimes, just sometimes, I want space to breathe and just be.

Where is the girl that loved singing, acting, dancing, Smash Hits & Just 17? The one who knew all the Top 40 bands & could name the song from the opening notes? The one who was going to marry George Michael (ok in hindsight that was never going to work itself out for a variety of reasons 🤣🤣) or one of the NKOTB’s? (equally as unlikely!)

Who was that woman who had ambition, studied, took exams, embarked on a (surprising!) career in finance, a 5 year plan?

Somewhere along the way of the adulting process, the parenting, school runs for the last 16 years, last minute magicking up of ingredients for a forgotten domestic science lesson, PTA bake sales, the medicalising & therapies, in amongst all the battles with services, social care and such like, I’ve lost who I was, who I am.

Sometimes I see a tantalising whisp of her on a day when she’s donned a posh frock, a fleeting glimpse at the edge of the mirror when applying her lippie or when she sings along loudly whilst Miley Cyrus* blasts out on the radio, loud and punchy.

*for the avoidance of offending Miley and her legions of fans, I’m definitely not claiming I’m anything like her in any way but dang that girl has amazing pipes (no lewd comments please!) & I’m loving her latest stuff, especially the Stevie Nicks Edge of Seventeen sample on Midnight Sky! Midnight Sky Miley Cyrus

Sometimes when I try to remember what it felt like to be just ME, not someone’s mum, wife, chief cook & bottle washer, it feels like a game of Guess Who, trying to pick her out in a line up of vaguely familiar faces and accessories.

👩🏻‍🏫🧒🏻👩🏻↗️🔙❓⁉️🔜👁‍🗨 ↖️👧🏻👩🏻‍🦱👩🏻‍🔧

Or maybe it’s more like those Usborne books? The series of “Thats not my…” insert unicorn/penguin/car? “That’s not my Mum – her eye bags aren’t big enough! That’s not my Mum – she hasn’t got any wrinkles on her forehead…” I don’t think this book would be one of their greatest sellers to be honest…

And it makes me feel terribly guilty to acknowledge all this; after all, as one of my young people is fond of pointing out, it’s not their fault, they didn’t ask to be born & if I can’t cope, I shouldn’t have had so many children…. ouch…point taken.

Recently I had what I like to think of as a “factory reset opportunity” & I snuck away with Mr DNTW’s as my partner in crime, or rather partners, 2 of them being of the 4 legged variety.

It was a glorious day, one that emphasises how very beautiful North Yorkshire is. Mr DNTW’s & I jumped in the car after loading up the pooches, headed up the A1 and went to the seaside *“sans enfants”

*Before anyone calls Social Services, the younger 2 weren’t left home alone with a box of matches, baked beans and tin opener. We are lucky to have some very experienced and fully trained carers to call on for respite

I felt a split second of guilt knowing that the kids would have loved to come too…. but it evaporated quickly with the sun glinting off the road surface, the fields that rolled away behind us and the knowledge that we were getting ever closer to the water.

Admittedly the North Sea doesn’t have quite the same pull as say, the Med but having lived all my life (prior to the last 6 years) on an island surrounded by water, (yes I know the UK is an island but it is not the same as the Channel Islands!) the sea is the one thing I miss hugely and always feel drawn too.

So when we arrived in beautiful Saltburn-by-the-Sea, eventually managed to find a place to park and then the restaurant that made both of us go “oooohhh” (those of you old enough to remember the Bisto twins advert peering in the window, it was very reminiscent of that!) had a free (socially distanced!) table AND would accept the dogs, well it felt like serendipity, the stars were aligned and the gods were smiling on us!

I won’t bore you with the inanities of our lunch (delicious! Worth every penny) but the fact that we didn’t have to pick a restaurant based on how good it’s Wi-fi was (or wasn’t!) whether there was something on the menu that everyone in the family could eat or how we could seat so and so next to so & so but not next to them was an added and unexpected treat.

We hadn’t even really set out to find somewhere to lunch. We just stumbled across the restaurant as we began our walk. Having been so careful for so long about maintaining shielding, not socialising, not going out unnecessarily and so forth, I think we both felt a frisson of excitement, liberation I suppose.

We laughed, we chatted over numerous different topics, reminisced and remembered why we love being together so much in the first place.

We had 3 courses AND coffee without anyone moaning they were bored or too hot/cold/wanted to go home. We people watched and admired the decor inside (we were outside on the balcony because of the dogs) The toilet facilities had me in raptures and starting a new Pinterest decor board! (Octopus tentacle door handles are surprisingly pricey it turns out! 🤣)

The dogs too were happy under the table, loving being with their hooommmaannnss; occasionally small noses would snuffle up by our knees & 2 pairs of beseeching eyes would watch EVERY.SINGLE,BITE.OF.FOOD we took. They were content with the occasional bit of ciabatta surreptitiously smuggled under the bench and watched the seagulls with their beady eyes.

Later with our bellies pleasantly full but not sleep inducingly so, we set off down the pier to walk off our lunch and let the pooches have free roam along the beach. There’s a stretch closest to the ice-cream shops, toilets & arcade that’s designated dog free or dogs on leads & not on the beach itself but just a little further on, miles of course golden-red sand that was perfect for them to run free, in & out the water, chase each other; investigate the tantalising seaweed, flotsam & jetsom of sea life that the incoming tide was depositing randomly along the shore line. Judging by the amount of sniffing and enthusiastic tail wagging, the short, happy sounding barks, they too were #livingtheirbestlives.

All in all we walked for around 2 hours. My ambition to keep walking until we drew level with the wind turbines further up the coast was perhaps a tad ambitious (apparently 10 miles or so further up the coast!!) and so mindful of the fact that we did indeed need to return home that same day, we about turned and made our way back to the car, happy, tired, a bit sandy but refreshed and exhilarated.

That day stands out to me. It made me feel like me again. It gave me a glimpse into the future of what times might be like when Mr DNTW’s reaches retirement age (a good while yet!….and not budgeted enough for!) and the knowledge that we will (hopefully) be able to be more spontaneous, jump in the car, drive up the coast, do something on a whim from time to time.

And it reminds me too that we are the lucky ones: too many parent-carers out there terrified that their children won’t make it and if they do, because their care needs are so profound, so complex, so costly, what the hell happens to them when their own parents are no longer around or no longer able to provide the care they need? A tale for another time…..