Welcome to Planet Zorg

My heart is heavy as I write this; acutely aware of the two recent high profile cases in the American media regarding autism. The untimely death of two beautiful souls who did what thousands of kids have done before them, and thousands will do again; wandered off from under the watchful eye of their parent or carer. Mostly, though, this ends happily and through hugs, tears and frustrated relief family and child are joyously reunited. The recent cases in the media serve as a stark reminder that not all cases end quite as happily ever after.

Most people think that autism is a thing; a diagnosis or description to label a condition. This is partly true, and yet for those of us living with it day in day out the fallout is so much more than a simple one-word conclusion. Caring for a child with a complex disability like autism is all consuming; there isn’t one part of my life that remains untouched by B and his needs. Do I choose this? Of course not. Please don’t presume I am an overbearing mother who can’t bear to unwrap the cotton wool from her precious boy. I don’t choose the guilt that comes from being unable to meet each family member’s needs. I don’t choose the endless battle for the right support and services. I don’t choose the absolute exhaustion that starts every day when I wake up. I don’t choose the ignorant and hurtful comments that are thrown my way on a regular basis. I don’t choose the total isolation this thing brings with it. I don’t choose the stabs of jealousy that come thick and fast when I watch other people’s regular families. I don’t choose the uncertainty of the future and I definitely don’t choose the grief I carry with me daily. Autism demands everything and B’s disability necessitates I give all of me, all of the time. It takes one second for tragedy to strike; one moment of taking my eye off the ball for it all to come crashing down.  

There is a well known poem written with the aim of giving regular parents some sort of insight into the world of parenting a special child. It’s called ‘Welcome to Holland’ and while I identify with a lot of it, I also find it to be slightly too trite and neat to represent the mad chaos that comes with this crazy journey. So I decided to write my own version.

Welcome to Planet Zorg

Having spent the previous few months preparing for our mission, the moment has finally arrived. We’re on our way! Cramming all our summer clothes into the allocated two tiny cases we grin excitedly at each other. Family gather to wave us off into the sunset as we board our space shuttle; The Jupiter Express. We’ve been assured by mission control that although our family won’t physically be with us, the newly developed super speed connection will ensure we have contact whenever we need it. Slight apprehension sets in as we buckle up our belts, but grasping each other tightly we remind ourselves that we’re ready for this. Months of training from the Jupiter Committee mean we know exactly what to expect on landing- the climate is hot and dry, the landscape a patchwork of rolling hillside and the weather fairly predictable. Eating solely Jupiter cuisine for the duration of the training means our systems are well adapted to this new food, even if it is an acquired taste. There are occasional freak storms but the natives are friendly and besides, we’ve been prepped to the hilt in knowing the language and customs of the planet. Occasional gaps in our knowledge will be inevitable, so we’ve been warned, but there’s a fully comprehensive support system in place for that, with Ground Control a simple call away. 5….4…..3…..2……1….BLAST OFF!  Bustling crowds fade into the distance and the next leg of our journey begins; now we’re on our own.

After several hours the Jupiter Express crash lands onto the planet, turbulently and awkwardly like a hippo on ice. In all the run-throughs back on earth that landing had been perfect and yet the real thing leaves us shaken and dazed. Nursing our bruises, we limp to the door with undeterred passion, enthused about finally DOING, rather than simply WAITING. After much effort the door eventually swings open and unease gives way to cold hard fear as we survey this strange new planet. The icy blast of air tells us something is very wrong, and peering out spiky snow covered mountain ranges replace the expected rolling hillside. Rising up steeply into a cold unforgiving horizon the confusion threatens to overwhelm us until from somewhere we remember our training. Grabbing the phone we frantically dial Ground Control. Nothing. Dialling again… still nothing. It soon becomes clear in the chaos that we’ve lost the connection; somewhere along the journey we’ve ended up crashing onto a planet outside the realms of our knowledge or experience, a place we are entirely ill equipped and unprepared for. Cold fingers grip our hearts as we struggle to keep warm with the few clothes we’ve brought with us. Stepping out into the unknown we are now entirely dependent on gut instinct alone; everything that’s gone before crumbles against the bleak backdrop and hope fades as we realise our utter aloneness. Where are we? This planet was never even on our radar. 

This planet was never even on our radar.

Filter Free

B has a particular passion for peculiar sensory experiences. He has been diagnosed with a sensory processing disorder; simply put his brain is wired up differently and the way he perceives things through his five senses is fairly topsy turvy in comparison to you or me.  Where we can filter and subconsciously decide important objects versus background objects in our immediate environment, B struggles with this. Often this will play out in either sensory seeking or sensory avoidant behaviours, which can in turn result in the most comical situations for us as a family. Most of the time I will try these things out with the purpose of understanding B that little bit more, but even I draw the line at poo-smearing.

I was wandering around Sainsbury’s one day with B when he was a lot younger. He was, as every two year old in Sainsbury’s seems to be, wholly unimpressed by the supermarket scenario, despite my best undignified mum attempts to entertain him. Four wheels on the bus renditions (complete with extra verses and ridiculous actions- the whole zoo had apparently boarded this bus), one fruit juggling fail and one lentil-pack-shaker-launch and explosion later and I was losing. The battle, the will to live, my dignity; you name it, I was losing it. Scooping things off the shelf Supermarket Sweep style I had only one aim- exiting the consumer hellhole with some form of purchase, even if it did mean mayonnaise on toast for the next three weeks. B was performing his trademark ‘cashew’ move- similar to the copyrighted ‘plank’ move pulled by toddlers the world over when they really DON’T want to get in their buggy/car seat/trolley/other transportation device. Here’s a gem of wisdom for all you parents struggling with plank issues-tickle their tummy (they bend in the middle) and then use your knee to hold them in while you do their straps up with your free hands. Works every time, but wise to keep an eye out for any stray social workers scouting the vicinity. Anyway, the cashew. B’s very own version of the plank as executed by a child with crazy hypermobility. Where most kids will stop at the plank, B will extend himself into a backwards banana shape, which does not work well in a trolley seat. Think upside down head dangling into the shopping while body remains contorted in the seat. Comfortable.

Wrestling with my inner Annabel Karmel, I grabbed the nearest packet of crisps of the shelf and committed the ultimate shop taboo; child consumption of unpaid-for items. The fellow Sainsbury shoppers seemed so far unoffended by my actions and peace reigned for a full 30 seconds. That half minute was all it took for B to decide eating the crisps one at a time was far too mainstream; cramming the entire packet into his mouth was clearly the way forward. First I heard gagging and on twirling round raced over just in time to ‘catch’ his upchuck. It baffles me how our first instinct on seeing our child vomit in a public place is to offer our hands as a bowl. Delightful. But wait, dear reader, the best is yet to come. This sensation of overstuffing his mouth and choking on his crisps set in motion a chain of events that still haunts me to this day. For B this was nothing more than an interesting sensory experience. He had no inkling that causing himself to throw up was just not becoming to a toddler. Even now, B goes through phases of self-gagging, whereby he will shove his hand/a long toy/a marble/food/any other given item into his mouth to deliberately cause him to gag and puke. Somewhat awkward when you’re stuck in a supermarket queue or café trying to explain that you don’t in fact have the world’s youngest bulimia sufferer for a child.

B has no appropriateness filter; he doesn’t yet know what is socially acceptable and what is downright bizarre. He is motivated solely by his intense sensory needs, which makes life hilarious at best and lethal at worst. Hanging upside down off tables, licking random people’s cars as he walks by, obsessive spinning of wheels near to his face, being drawn to vibration like an insect to the insect zapper, trying to get INTO any nearby water (water play tables, lakes, the sea), and dropping to his knees to drink out of puddles are all commonplace B manoeuvres. We gave up taking him to farm parks for a while for fear he would contract some grim disease from licking the animals, or get his fingers pecked off from sticking them into the chicken coop (which incidentally he found hysterical). All this with no hint of embarrassment because he simply doesn’t get the social barriers.

I think we all start out like this- filter free. Take my other typical kids. They regularly come out with incredible gems which indicate their social immaturity. Admittedly they are all my kids, which may go some way to explaining their tenacity and bluntness, but I’ve saved the following few pearls for your entertainment.

Public shame for S as BH outs his bottom cleaning skills (or lack of them) in a very loud voice en-route to the park. BH- scratching bottom ‘Dad, you didn’t wipe my bum properly, my bumhole’s still all itchy.’

S’s dark past makes an unwelcome appearance at BH’s birthday party. O- as the giant jelly-baby shaped jelly is served ‘When Daddy was 18 and it was his friend’s birthday, he made him some giant jelly boobs.’ Cue uncontrollable laughter and boob wobbling from kids and uncomfortable conversation-topic-shifting from parents.

The time I didn’t know whether to laugh or cry as we were served in the local charity shop by a particularly hairy lady: BH- staring intently ‘Are you a boy or a girl?’

The guy on the beach who accidentally knocked her off her scooter: BH- getting up with an indignant look, then shouting at the top of her voice ‘WHY DID YOU DO THAT?’ The guy was utterly floored and was subsequently mocked by his mates for being brought down by a toddler.

On a recent in-law visit BH decided to make known her feelings to her beloved grandparents: ‘I don’t like you Grandma, I actually only like Grandad.’

A public toilet trip becomes a very public toilet trip: BH in the loudest voice possible ‘Mum. What’s a pube?’

I’m sure you have your own little nuggets of inappropriateness but it got me thinking. What if in training out the social faux-pas we create a culture of half truths. A world where we’re too worried to speak out what we’re really thinking for fear of inadvertently upsetting etiquette. The rules of society are ever changing and unpredictable; has our supposed ‘selective’ suitability filter actually become a blanket block for anything that might possibly offend. Or swinging the other way can this block stop us speaking out the good stuff? How many times does a compliment run through our head but get swallowed up somewhere en-route to our mouth because we’re afraid of looking stupid or breaking some unwritten social rule?  There’s a golden piece of advice for this predicament tucked away in the Bible. Speak the truth in love. Children have no issue speaking the truth, although they may need some help and direction to speak it in love. But we grown-ups get stuck on the first hurdle.

This is one great lesson I can learn from my kids. With the best of intentions, I’d love to be filter-free and follow that great advice. Social rules are overrated. B definitely agrees. J

Family Time

Disclaimer: If you fall into the ‘Let’s rejoice, the holidays are here!’ category I apologise in advance for raining on your parade. However, please don’t feel the need to call me out on my poor pessimistic parenting, I may just feel the need to punch you in the face. ;-)

I don’t know about you, but I am one of those people who slightly dread the school holidays- no sooner do they start and you’ll find me counting down to when they finish. I love spending time with my kids, I really do, but when there are four of them and one of me, the ratio doesn’t swing too well in my favour. Our respite for B won’t stretch to cover an extra pair of hands for every day and S is usually working, leaving me the daunting task of keeping four children alive by myself for a whole two weeks.

One day in and I am full of forced optimism for the coming fortnight, reminding myself of all the lovely things we can do now there’s no school. Delusions of grandeur dance through my head as I imagine skipping through the fresh spring fields hand in hand with the kids. Fast forward three days and most of my sanity has usually departed, along with every ounce of energy and patience. My ideals are evaporated and I claw my way through each day, satisfied to get to the end with all my kids alive and kicking.

Having exhausted pretty much every free thing to do this past Easter I found myself begrudgingly agreeing to take the troops for a fun (and ridiculously overpriced) day out at a certain local theme park. Well, when I say theme park, think dodgy travelling fairground come farm park and that’s probably closer to the truth.    

Things were going particularly well until I unwittingly decided to take B on the pirate ship- his need for sensory input is huge so crazy rides are totally his thing. We sat at the back where you are most extremely swung- the bigger the better as far as B’s concerned. As the ride started up I knew instantly this wouldn’t end well. The boat reached its full over-vertical crescendo and I clung to the safety bar for dear life praying harder than I’ve ever prayed. Oh Sweet Lord. Screams around me pierced my ears as I reluctantly opened an eye to check the expression on B’s face; he was blissfully unaware of the mortal danger and absolutely loving it! I however, had to concentrate very hard to keep my breakfast from being upchucked all over our fellow passengers and every time we went up, I was genuinely petrified B might just flip-flop right out. Note to self: hypotonia and cheap amusement rides do not make for a happy ending. This ride had no seat belts, just a lap bar which didn’t actually reach your lap if you happened to be five. Getting through to B that it was a wise plan to at least hold the bar was a no-go, so I had to hope beyond hoping that my makeshift seatbelt-arm solution would suffice. B’s floppiness means he doesn’t have great control over his beautiful little body and so this ride was akin to doing battle with gravity to keep hold of a person-shaped sack of flour. A cocktail of terror and adrenaline ensured our survival and as we emerged from the Ghostly Galleon from hell I hurriedly herded him away and looked around for my other offspring. Who all as it seemed had gone AWOL.

One picnic lunch on a bird turd bench, three somewhat panicked searches for lost children, four explanations that washing hands was indeed a necessary part of lunch especially after being weed on by a guinea pig, and sixteen can-we-buy-sweets refusals later we were ready to go home. I chuckled to myself at the media myth of  family time. The alfresco dining in suspect looking Alps-esque locations, the smiley happy board games, the siblings playing without a trace of rivalry (much less an actual fist fight). Looking at my tired bedraggled children I decided the reality was far less Truman Show and far more Jeremy Kyle. Near death experiences, screeching in fishwife fashion and vomit all come with the parenting territory, and for those of you non-parents out there, beware, the landscape is definitely Asda Smartprice over Cath Kidston (no matter what the baby magazines may tell you!)

I bundled my babies into the car and as exhaustion kicked in and they fell asleep I fell in love with them all over again. Family time, like families, comes in all different shapes and sizes and however messy, shouty and crazy it is, I enjoy mine for exactly that reason; it’s mine. Forget perfect, I’m striving to embrace the chaos. I’d encourage you to do the same. But wisdom and good intentions aside, ROLL ON MONDAY!

Five Minutes Peace

There’s a small five word phrase that’s banded around a fair bit by us (less than reputable) parents. We normally wrap it round our dubious parenting techniques to justify our behaviour like the only limp lettuce leaf in our ‘healthy’ option BLT sarnie.

Treating our little darlings to a nice hot bubbly soak in the tub; translation- seeing how much child-free time we can possibly steal to snatch a hot cuppa or a five-sentence conversation with the hubby. This often results in small, cold, raisin-like children removing themselves from the bath when they feel the first chills of hypothermia beginning to set in.

The stealth off each morning as small people emerge one by one in your bed, apparently materialising from nowhere and clambering all over your poor tired self. You pull off an Oscar worthy performance, so convincing your other half actually believes you to still be asleep and surrendering to the epic foot in the face manoeuvre admits defeat and gets up. Score.

And the evil TV- every parent’s dirty secret. Although the admission of such a heinous crime as leaving Princess Penelope in front of the box for a good two hours straight while you lose yourself in the next room in the latest copy of Hello magazine would be parental suicide. Your fellow mummy mates would be nothing short of mortified at you failing your child so monumentally. I mean, two hours in front of the TV is surely tantamount to child abuse when there are such educational alternatives available as conjugating verbs, deriving base formulas and learning trigonometry.

So, the five word phrase? ‘Anything for a quiet life.’ I’ve been thinking about this phrase a lot recently, because actually, I’d do anything to avoid a quiet life. Here’s why.

My little boy is entirely non verbal. By that I mean he doesn’t talk. At all. He’s 5 years, 7 months and 16 days old and is yet to learn a single word. This inevitably leads to frustration for both him and us as we desperately try and teach him alternative methods of communication, ones that don’t involve slapping, pinching or inappropriately grabbing the nearest stranger’s hand and leading them off into the sunset. Normally the whole comparison thing grates on my like nails down a blackboard, but once in a while it’s useful for centering me, giving me perspective and providing me with the right knowledge and ammunition to fight for my child and the support he needs. So out of interest I looked up the average expressive vocabulary of a ‘typical’ child his age, that is to say the number of words spoken by your average 5-year old, and it’s a staggering two thousand five hundred. My heart broke a little when I read that. For the average child, apart from the first handful, the majority of these words are learned with such ease that they are often taken for granted.

While I understand wholeheartedly the infuriating toddler Mummy why stage, incessant and unrelenting as the drip-drip-dripping of Chinese water torture, I’d give anything to hear that one word from B. While I relate to poor old Mrs Elephant in that hilarious kids story Five Minutes Peace (I think Mrs E ends up locking herself in the loo or something) I’d happily trade in every quiet moment, which are admittedly few and far between, for the non-stop chatter of my Boy Wonder. There’s not a price I wouldn’t pay for a Homer Simpson style baby translator (you know the episode- he’s suddenly incredibly intelligent after removal of a crayon lodged in his brain, he invents loads of things and then decides being clever sucks so shoves the crayon back up his nose).

Unfortunately I don’t have the luxury of living in the fairytale world of endless possibilities. As much as I wish the jumble in his brain would magically tumble out of his mouth in formulated words, right now it’s just not happening. All I can do is teach, pray, encourage and praise. And while I can’t imagine any sound better than hearing B’s first word, I have no choice but to trust the one who DOES hear him.

Psalm 139 in the Bible talks in intimate detail about how much God wants to be involved with us. About how he has, does and always will know everything about us. Not because he is some sort of interfering heavenly busy-body waiting for it all to go tits up so he can tut and wag a holy finger in disapproval, but because he’s interested. And he’s interested because he cares. Hugely. So although I don’t know what goes on in the depths of B’s brain, I do have the privilege of knowing the one who does.

OK, confession time. A lot of people, for whatever reason, feel the need to tell me of their admiration for me when they learn I have a severely disabled child. Don’t get me wrong, it’s always nice to be encouraged and all, but at the end of the day I’m just cracking on with parenthood like anybody else. They say I’m strong, that I’m a fighter, that I have endless patience, and that they couldn’t do it.  Here’s the deal.

I’m weak, but I trust in a God who is infinitely stronger.

I’m tired, so tired, of fighting, but I trust in a God who never gets tired and is endlessly furiously for me.

My fuse is short, but God’s grace is long.

And the plain truth is, I can’t do it, I’m beyond myself, but I trust in a God who is more than enough.

So although I’d give the world to hear my boy utter his first word, for now trusting him to the God who hears him and knows him intimately will have to do. That’s no second best.

Anything for a quiet life? No thanks.

The Umbrella Stand

One of S’s conditions in agreeing to baby number four was that I learned to drive. Fair enough, I could see how, from his point of view, playing taxi driver to three small people and me, plus always being the dessie driver by default because he was the only driver could get quite tedious. To add insult to injury, I rarely drank when we went out, normally for one of two reasons- namely pregnancy or breastfeeding. I think we calculated that I’ve spent 37 months of my life pregnant, and 44 months of my life breastfeeding the products of those pregnancies. (If you’re wondering about the extra month of pregnancy- all of my kids were hugely inconsiderate and rocked up late. Big dislike)

Before I learned to drive my main mode of transport was, in the words of S, the dreaded ‘peasant wagon.’ This amused me in the extreme, having happily used buses my entire life since my mum never drove a car, but to S the mere thought of sharing a vehicle with strangers (and possibly unwashed, germ-ridden strangers at that) filled him with terror. I had the unique pleasure of using the bus back in the day where ‘wheelchair accessible’ and ‘buggy friendly’ were not phrases commonly associated with this mode of transport. Unless of course you happened to live on the Swansea tourist route 101, where bright shiny new buses were all the rage. We lived 4 miles out of Swansea City Centre on a route which, had a tourist inadvertently stumbled upon, they’d have been readily forgiven for thinking it was some kind of Jeremy Kyle/Eastenders/reality TV filming location. The local shop was a corner store which thrived mainly on selling out of date products at ridiculous prices. When D started at the local school nursery, I was literally the only parent in the playground who wasn’t themselves a former pupil at said school. On moving there people would ask S who his father was as a means of identification. S would then open his mouth and with a sugar coated Hampshire accent drop the bombshell that we were in fact English. S and I loved living there and, more importantly, we loved the young people there. One of the main pulls for moving was the opportunity to set up a youth club, and we quickly got stuck in at the local community centre, trying in our small way to make a ripple of difference in the pond of complacency and despair. We built community as best we could, demonstrating to the young people that there was more to life than sex, drugs and the place they lived, calling the youth club, wait for it, Underground X. (No particular reason, it just sounded immense and made for a great logo!) This was home and we loved it.

One particular day I was heading into town for one of the many toddler groups I attended (with all the religious fervour of a monk in Lent). I didn’t much enjoy the insane mother competition and comparison, but thrived on the company; it was a preferable alternative to going gradually insane as a stay-at-home-mum who actually stayed at home. I saw the bus approaching in the distance and, surveying my kids and taking into account the ever fluctuating variables (compliance rating of toddler, crying factor of baby, number of bags etc) planned my boarding strategy accordingly. At this point I’m sure you’re wondering why I didn’t simply push the fully laden buggy onto the bus; well, may I remind you, this was NOT a buggy friendly bus. This, my friend, was one of those janky old single deckers- rusty, noisy and about as comfortable to ride as an intoxicated camel. It was impossible to even alight the bus without totally collapsing the buggy. Folding a buggy one handed, holding a six month old, coaxing a toddler and carrying the necessary paraphernalia was no mean feat. Anyway, I cracked on with my tried-and-tested method, unstrapping baby O and decisively handing her to the unsuspecting bus driver. She, as yet unperturbed, remained her happy gurgly self. Result. I deposited D on ahead with strict instruction not to move and folded the buggy up, re-boarding the bus and collecting O from the bus driver en route with my free un-buggied arm. Usually at this point I’d heave the buggy into the luggage compartment on the right hand side of the bus, but as I approached I discovered my fatal error on this particular occasion. I’d mixed up buggy and baby. It was imperative that my buggy was in my right hand to enable easy one-handed heaving, but now I found myself with baby on the right and buggy on the left. I have to admit I was feeling the pressure; all eyes were on me as I contemplated my next move. Knowing I was solely responsible for the tardiness interrupting everyone’s earth shatteringly important schedules, I thought quickly and attempted to heave the left hand side buggy across my body and into the right hand luggage compartment. This would have been a sterling plan, except that today it happened to be freezing and I had dutifully wrapped up baby O in a Maggie Simpson style snowsuit. I heaved, and the world descended into slow motion as O slipped out of my right arm and fell headfirst into the bus umbrella stand. Damn that slippy snowsuit. The overriding thought running through my head was how exactly I’d explain to S that I’d killed his precious second-born in a ridiculous death-by-umbrella-stand stunt. A micro-second later I’d pulled myself together enough to retrieve my daughter; screaming, red-faced, indignant and with a lump the size of Snowdon rapidly forming on her head, from said umbrella stand. People’s eyes burned into me, aghast at the scene they had just witnessed. I turned to them, gave a forced smile and proceeded to politely offer my opinion on the previous few moments.

‘Next time you see a lady struggling onto the bus with a toddler and a baby in tow, it may pay to choose one of the following options. One- you could offer your help and take toddler and/or baby and/or bag because, although it may look like fun, aforementioned combination is actually a pretty tricky one to manage when embarking upon such high tech public transport as the Swansea buses. Two- if you choose to refrain from helping, please also refrain from staring. Staring, as entertaining as it is for you, does not in fact qualify as helpful in any way. Thank you.’

Holding my head high, complete with a freshly bruised baby on my lap (thereby proving my exceptional parenting skill), I felt vindicated for all of 8 seconds until the realisation dawned. I now had to endure a bumpy four mile bus ride with most of the people I had just publicly berated. Awkward.

On arrival at our destination, the bus clumsily ground to a halt and I feared the worst, wondering whether anyone would choose to offer their help after the preceding 20 minutes. Thankfully, a lovely old lady offered to help D down the death stairs and off the bus, waiting with her while I collated baby O, buggy and bag. The lady congratulated me on my courage and determination, leaving me with the closing line that ‘if more people spoke up for the right thing the world would be a better place.’ This encouraged me greatly, and as I headed towards the hall of hollers (aka toddler group) my mind wandered to all the other ways I could set the world to rights. I was on fire with ideas and ready to take on anything when I was rudely interrupted by D. ‘Mummy, I weed in my pants.’ Fantastic. The world changing could wait. For now, toilet training my two year old would have to suffice.

Bright Pink Hotpants

Firstly, apologies for the slackness in this very tardy blog. Secondly, I love every one of you brilliant, encouraging, fantastic, supportive, awesome individuals for taking the time out to read my ramblings. It means more than you can know.

It hasn’t been the easiest few weeks. In fact, epic crises the size of Everest have seemed to strike one atop another like angry waves battering the shoreline in a particularly gnarly storm. My resolve to remain rock like is rapidly eroding into sand, but I figure there are some sand attributes that aren’t so bad after all (but that’s a whole other blog post!)

My eyes have recently been opened to a whole other realm. A realm untalked about by the masses- funerals and death 101. I have no previous knowledge or experience on this slightly taboo underworld-it’s not something that generally pops up in the everyday chirpy dinner party conversation. On the occasions I have seen it attempted with such casuality the result has been fallout akin to a sudden arctic ice blast-cold, hard, desolate and, well, frankly, awkward. For some reason, although it is literally an everyday occurrence, we are not comfortable with death. This fascinates me. It’s as if something in us recognises death as an alien feature, one that was never intended to be from the beginning. No matter how expected, death still leaves a hole, leaves us questioning our very core belief and value systems, leaves us clinging to the vain and fragile hope that there must be more.

Well. 18 days ago I was rudely and unpreparedly shoved into this whole new universe. The words ‘funeral’ ‘memorial’ and ‘cremation’ have never slipped so easily off my lips. Those alongside ‘postmortem’ ‘death certificate’ and ‘coroner’s office.’ 18 days ago my Mum died, totally out of the blue and at the tender age of 54. An unexpected thunderclap, my sister’s frantic phonecall on finding Mum still rings in my ears, echoing round my head in distortion like some ugly batcave echo.

Through tears and hugs, and with a good dose of apprehension, we entered the hazy sub-culture of death. With other family being removed from the situation by a 100-mile drive, H and I groped our way along the murky dank tunnels alone, with each additional piece of information acting like a welcome tealight in the gloom.

As the reality of Mum’s death began to sink in we distractedly nodded, signed papers, made decisions on burial versus cremation, chose flowers, picked a coffin and made other such seemingly unimportant decisions.

Grim chaos aside, you’d be surprised how much humour is there to be had for the taking during this process. When we first had the pleasure of meeting our funeral director, a lovely gentle man, I remember thinking how absurd and ridiculous his surname was. Mr Rice- seriously? That had to be a stage name for his funeral directing, created for the sole purpose of making grief-stricken persons such as myself snigger inappropriately.

The choice between burial and cremation was an easy one, confirmed by the knowledge that cremation was the (marginally) cheaper option. Mum would have thought it ridiculous to spend any more money than was absolutely necessary on something you were literally going to reduce to ashes.

The choosing of the music for the crematorium committal was slightly trickier. J, H’s brilliantly witty hubby, found humour to be the best way of dealing with the surreal situation we found ourselves in, and as such cracked out bad joke after bad joke. We hesitated for all of 8 seconds on ‘Disco Inferno’ for the crem (complete with an upbeat street dance number by the grandkids), before settling on a less offensive classical piece.

H wanted to say one last goodbye to Mum at the funeral parlour, and I will freely admit that was one of the most ludicrous encounters I have ever had the pleasure of. H and I had gone to pick out a nice outfit for Mum from her home, and the very first thing I noticed when we got into the chapel of rest was the fact that the pink cardigan had been buttoned up to cover up the beautiful blue dress we’d chosen. Now I’m definitely no Vogue stylist (those of you who know me are no doubt inadvertently nodding furiously right now), but I do know that doing up a cardi over a pretty dress is akin to popping a baggy hoodie over the top of a posh Versace evening gown. I rectified the situation swiftly, all the while fighting the inner appropriateness/etiquette demon within. H and I chatted to Mum, struggling to comprehend she was no longer there to respond. H asked me to pray, and the immediate scenario that sprang to mind was the biblical story of Jesus and Lazarus.

Long story short for those unfamiliar among you; Jesus was good mates with a guy called Lazarus, in amongst that friendship group were a couple of Marys also (at a guess Mary would have been in the top ten on the popular baby names list for 27AD) Lazarus gets super sick and without the miracles of antibiotics that we have today the Marys are distraught, thinking Laz may kick the bucket. They send for Jesus knowing firstly he’s their mate, and secondly he was a bit of a whizz at all this crazy miraculous healing stuff. Problem is, JC is hanging out a couple of days away, and by the time the message gets through, nature has taken it’s course and Laz has indeed passed on to pastures new. As was customary in the tradition of the day, they balm him up with spices and stick him in the nearest tomb/cave. JC arrives three days in, all pumped up for the God-fired healing, and is rebuked by the Lazarus ladies who tell him through tears he should have got there earlier, and didn’t he understand- Laz was dead and buried. JC, not one to shy away, and with quiet authority told the people to open up the tomb. They protested, namely because of the stench and disease that would come from exposing a three-day old body, but eventually relented; perhaps out of desperation, perhaps out of submission to the clear power Jesus displayed. Anyway, long story short, Jesus does an incredible miracle, and Lazarus walks out of the tomb-ALIVE! Shawn of the Dead, eat your heart out. So this story ran through my brain super-speed when H asked me to pray, and without thinking, I recounted that Jesus could probably do for Mum what he did for Lazarus if we asked, and did she want me to pray that. The next 30 seconds were, in the words of Alice, curious and curiouser as I prayed for the Jesus who could to do life again if He would. I even surprised myself with my faith as I warned H ‘not to be freaked out if Mum came alive again.’ In all honesty I can’t imagine Mum would have thanked us for bringing her back again. I have absolute assurance that she’s in a better place and can only imagine the mouthful we would have been subject to on a successful resurrection attempt!

I was still struggling to wrap my head round the idea that my mum was both there and yet not there, so to my shame I instinctively gave her hand a slight prod, again questioning my innate irreverence at the whole odd circumstance. Cold, waxy and definitely dead, the information crystallised in my mind like frost on a window pane, the numbness penetrating through my whole body. We left fairly soon after, and if I’m honest, the visiting of a dead person is something I wouldn’t choose to do again in a hurry.

It’s quite amazing how close laughter is to crying, and as we continued to work through the crazy list there were tears and laughs aplenty. ‘Totes inappropes’ in the words of Fearne Cotton? Maybe, but who gets to decide appropriate and proper etiquette in a whirlwind as mad and bizarre as this? One pearl I would like to pass on in my new found wisdom- ask your loved ones to pre-plan their funeral now (and pay for it if at all possible!) Planning a funeral and memorial service is like organising a wedding, but backwards, in a fiftieth of the time, and while wading through the muddy mire of unexpected loss. There are silly details on which decisions need to be made- colours, food, decoration, flowers, music, how to let people know. (At this point I am very thankful for the formula one vehicle of news that is social media) All these details are on the one hand entirely inconsequential, and yet on the other hand hugely significant; a bizarre oxymoron of memory against the backdrop of death.

We chose to make the thanksgiving service memorable by asking people to wear bright colours. Mum always wanted to dress bright at other people’s funerals as a celebration of their life, but never quite had the courage, so we decided to brave the social norms on her behalf. Now I’m an all-or-nothing kind of girl, so when we decided colours I really went for it. I found myself standing at the crematorium, gripping H’s arm for dear life as we watched Mum’s coffin proceed in, dressed in a lairy rainbow array. Purple top, orange cardigan, orange shoes, green leggings, a colourful beaded necklace, and the title of this blog post, bright pink hotpants. I would like to think that I’m maybe the first ever person to have entered the crematorium wearing bright pink hotpants, and as we said our final farewells, I could picture the smile (and slight amused eye roll) on Mum’s face. The weather in some sort of weird pathetic fallacy had morphed from grey rain to beautiful sun, and I tipped my face towards the sky and whispered one last goodbye.

Happy playing mum, I look forward with big excitement to the day we meet again. Until then, I’ll be rocking those bright pink hotpants…

Don't Grieve For Me

Don't grieve for me, for now I'm free
I'm following the path God laid you see.
I heard him call. I took his hand
And travelled to a better land.

A land where I am whole and strong
Where life is beautiful and long
The colours bright, the music sweet
A place where I have found my feet

Pure joy, full peace-my God is here
I know you wish I was still near-
But resting with Jesus, I'm safe in arms
Protected from all that once caused me harm

*  *  *  *  *  *

But Mum, you're missed, you've left a hole
Your loving heart, your gentle soul
Your laugh was infectious, your humour was great
(I'm not sure your cooking was worthy to plate)

You never held back in the words that you spoke-
'I'm so proud!' 'You're awesome!' 'You chose a great bloke!'
Your art was amazing-your beauty shone through
Your talent, your flair and your thoughtfulness too

No more pain, no more suffering-of this there's no doubt
You're able to breathe, to run and to shout
The best life above, in His arms safe you'll be
But my wish Mum would be just one more chat with me.