Drama Queen

 Last Thursday, I woke up early, having hardly slept due to the stifling summer heat, and was grateful that the air had cooled down overnight. I opened the curtains to enjoy the fresh damp of the dewy garden, then went downstairs, made myself a coffee and brought it back to bed, and it was only then that I realised it was Hospital Appointment Day.  I was all at once stopped in my tracks and sickened by that awful kicked-in-the-guts feeling you get, when you remember something you have been dreading.

After that, my whole getting ready routine was refracted through a strange and sad prism of imagined meaning- the shower didn’t immediately work; what did that mean? Was it a sign? More of my hair came out than usual when I washed it; was this a warning? A prediction? I knocked my favourite and sparkliest, rainbowiest dangly crystal down as I passed in front of the windows; why that crystal? What was the Universe trying to tell me?  In my heart, I felt a strong sense that I was living the last few hours and minutes of a sweet ‘before’, to which the ‘after’ would be forever bitter in comparison. It took me a few goes to find appropriate music to mark the occasion. SYML seemed the obvious choice, but instead I went for Radio 1, in case of further messages from God/the heavens. Bloody drama queen! 🤣 

On the way to the hospital, in the passenger seat of Mum’s Fiesta, a seat I only ever seem to sit in when I’m going to the hospital, I felt sick. A few days before, on the way for one of my scans, Mum’s car had begun to squeak again. It used to squeak all the time two years ago when she was driving me to my radiotherapy appointments, 5 days a week for 5 weeks. Even the car knows something’s wrong, I thought.  I began to weep, tears for fears. I felt actually terrified. 

Long story short, it went SO much better than I thought it was going to.  I can’t even describe the relief.  The bubbly consultant and his upbeat specialist nurse put us immediately at ease.  

“Well, the good news is, we can get it out,” he said matter-of-factly in a friendly Australian twang.  

“Ok, good. What’s the bad news?” I asked, feeling like my guts were about to drop out of my arse.

 “There isn’t any bad news,” said the nurse gently, with smiley eyes above her Covid mask.

“Do you want some bad news?” the consultant asked in mock surprise, “ahhhh... well, you’re going to need an operation, so that we can get it out. And some chemo to mop up any bits left over.”  I already knew this, so it didn’t feel like bad news at all.

That was it. Yes, I was given the usual info about risks of surgery, what could go wrong in the worst case scenario, the stuff they have to say.  But after that, a quick examination of my now no longer churning tummy, and I was free to go.  Back in the hospital foyer, I felt like I was walking on air, so much lighter than I’d felt half an hour ago.  I could tell Mum felt it too.

Back home, Peeka loitered while I told the Ex how things had gone, and my eyes locked with her scared dark chocolate ones.

 “It’s all ok, I just have to have another operation and some treatment, it’ll be just like last time, Daddy will stay with you while I’m in hospital.”

“Ok,” she said, taking it all in her stride, before returning to Project Diva, her latest obsession.

I went upstairs to see Boo in her new bedroom.  The night before, at bedtime, she had asked me to give her a hug.  She hates hugs with anyone apart from her Dad, who she idolises. She especially hates Mum-hugs.  But that night she was tearful and upset. I jumped at the chance for a cuddle and asked what was on her mind.  

“I’ve been thinking a lot about death,” she said.  

“Oh, Boo, have you been worrying about my death?”

“No, mine”, she answered with a wobble. “Do you think when we die we get reborn?”

“Nobody really knows what happens, apart from the people who have already died.  Some people believe ... ... ... .  2 minutes of my musings on death and beyond. 

“What do you hope happens when we die, Boo?”

“I hope I live on,” she said simply.

“I hope I do too,” I replied.

“Was it bad news?” she asked.  So often I assume she’s oblivious, not engaged, unconnected.  She is none of these things.  She feels very deeply, she just doesn’t show it very often.  I shared my news and she said, “Ok, can you go now?” A typical Boo response. I have my information, you can leave.

I popped my head around Pips’ door, and told her my news as briefly as I could. Pips isn’t into long conversations with me, unless she has initiated them. I treasure them, when they happen.  This wasn’t one of them.

“Epic,” she replied, and continued putting on her make up.

Everyone is ok, I thought to myself.

On Friday morning, I made myself a coffee and brought it back to bed. Things felt back to normal again. Life as usual. Life, with its ups and downs. I opened the windows and heard the noise from the road outside, and, in between cars, buses and lorries, the birdsong from the trees out the back. 

New Scribblings

 

It’s been 3 years since I last posted to this blog.  Life has kept me entertained, or in any event, busy.

The girls are growing up fast. Pips 16, Boo 14, Peeka 12.  They are fantastic, funny, quirky, sometimes grumpy and mean, downright savage at times!  But mostly they are brilliant, intelligent, wise and beautiful young people.  Having become used to being a predominantly single woman and predominantly single parent for the past 5 years, with the girls’ dad 200 miles away and very quickly with someone else, I have settled into a different kind of motherhood, letting go of any hope that I will ever be perfect at this job; not even trying to be be perfect, and being ok with that.  It’s very freeing, but my house is even messier.  I don’t care unless people are coming over (excluding my close people, most of whom don’t care either.)

There have been both significant and insignificant other men in my life since the separation, but I’ve not been ready for anything so serious as meeting their parents or moving in together- I feel I have enough on with the life I already have, and I know my girls would struggle with sharing their home.  Let’s be honest – I would struggle with sharing our home.  It’s a struggle to share it with my own kids, frequently!  But I have gained a couple of male friends whose company I really treasure.  And even the Ex, for all his infuriating faults, is still a friend of sorts. 

My friends are awesome.  The Lasses -firm friends since Sixth Form- are hilarious and real.  I love these women.  Months, years can go by and they don’t change any of the things I love about them, but their spirits evolve into shapes and stories I find even more interesting and complex and side-splittingly funny.  In fact, all my friends are real and funny and wise, and nothing like me and just like me, and nothing like each other, but somehow all kind of cut from the same cloth, in different colours and patterns.   I feel really blessed that I have any friends, frankly, since I’d much rather hole up on my own, never encountering another soul, given the chance.  I’m an antisocial sod.  Except when I feel like being sociable, then I can do it for a bit, and have the best time! But I'm easily peopled-out, and then I have to retreat to the sanctuary of my loner-lair.

My parents are precious to me.  My mum and dad have seen me through some horrible times.  Dad with his easy, calm nature has been a rock, always there when I need him and also a big help in the garden and with DIY.  Mum… more of a lifeboat than a rock; riding the boiling seas with me, going with me through everything I have gone through, but feeling worse, I suspect.  Because while I was being floaty and positive and choosing not to deal with things sometimes, she took it all on; the worry, the stress, the terrible what-ifs.

Even though, usually, I feel fine and strong and vital, energised by the simple joys of life, my health has been a bit shit. There was the whole bowel cancer thing a couple of years ago; I might write more about it sometime.  But in a nutshell: the late diagnosis, the emergency stoma surgery, chemo-radiotherapy, premature menopause, more major surgery, infections (then doing a counselling placement, a load of coursework and finally completing my Counselling Diploma!), then a stoma reversal surgery which has left me with LARS, Lower Anterior Resection Syndrome – meaning I often shit myself with no warning, so I have to wear nappies – sexy. 

We moved house nearly 2 weeks ago, back into what was the family home once upon a time.  It had been mostly unlived-in for 5 years and was in a sad and sorry state.  One year, a very generous financial gift from the ex-in-laws, and a LOT of hard work later, and it’s looking like a home again.  A new home, for us now. We all have our own bedrooms now and there is a lot more space.  It’s so much easier to relax when you don’t have to share the one quiet place in the house with 2 washing racks, a computer and a huge box of mail to be sorted and filed.  I got the loft converted and now I have my dream bedroom, looking over the trees and houses.  I’ve been waking up feeling very smug and happy.

But, as I said to a friend recently, life doesn’t let you be smug for long.   I found out last week that my cancer has returned, in my liver this time.  I’ve scared myself silly by Googling survival statistics for secondary liver cancer.  But my doctors are being very positive about removing the 8cm tumour and blasting any leftover bits with chemo.  So I’m feeling hopeful that they can sort me out.

Faced with my own mortality in a way that didn’t really register last time, I’ve decided to write about my life again, just in case there is less of it left than I hoped for.  Sometimes I might feel profound  and inspired.  Sometimes I might just want to indulge myself.  And sometimes I might want to share a picture of my tea, review some cheese, or complain.  Maybe I won’t feel like writing again.  I don’t know.

Yesterday I did some gardening at my new house with my mum. Mum trimmed and lopped and I hacked, chopped and battered.  Then we sat in the shade of (half) an oak tree and watched the birds flitting around; it was very peaceful.

These are my legs and my wellies.  Enjoy.

 

What Mama Did...

I have taken a break from blogging for a while, since there is something a little bit soul-destroying in it, I’ve found.  I don’t really know what I expected when I started this journey of words and feelings, I just blindly jumped into it without thinking or feeling anything much except ‘Woooooooooooooo I’m doing it!’  I didn’t think about who my audience might be, if there was any audience at all.  Then I thought I did know. Surely it was other mamas like me?  Mamas living with Boos of their own, mamas on the front line, mamas in the trenches of Autism.  Mamas covered in spaghetti sauce, bite marks on their arms, sleep deprived, depleted, yet so full of love for their kids they could burst.

Then there was the inevitable self-doubt.  Who do you think you are, Mama, to be sharing your story as if anyone cares?  What can you tell these women that they don’t already know?  I’m not an authority on this.  I’m just one of millions.  And there are thousands of amazing ladies (and gentlemen) out there, blogging about life with their Autistic children, doing it so much better than I am.  I don’t really have anything new to say, that they haven’t already said more eloquently and beautifully.

Not being much of a self-marketing maven, my readership is pretty much limited to my mum and a few kind souls who know me already and read out of interest or politeness (thank you, guys!) And a few lovely people I’ve never met out there in FaceTwit land who stumbled across my blog (and I’m so glad you did!)

I haven’t been writing at all lately, but I’ve been really busy.  Good busy.  Raring to go, motivated busy.   I’m going to take the spotlight off Boo this time; give her a break, and shine it on… ME.  Because I am a mum, living with Autism – like so many others out there – and we mums (ALL mums, and especially mums of kids with special needs) never, ever shine the spotlight on ourselves.  It is just not done or proper or heard of.  So I’m doing it now, just cuz I'm nearly 41 and I can.

For those of you who have never met me, I am 5’5” and used to weigh 240 lbs.  That was around 160 lbs of *me*, and around 80 lbs of frustration, inadequacy, depression, hopelessness, sadness, anxiety and ice-cream.  I am what you might call an emotional eater.  My weight in my 20s settled at around 160, so I have never been a skinny mini, but as I approached 30 life brought more and more challenges, and I started to eat my feelings.  I turned 40 last year and didn’t really celebrate it, in the truest sense of the word, because I wasn’t ready.  Not not ready to be 40 – I didn’t care about the age thing- no, I was not ready to be the centre of attention.  Which, if you do know me, is a joke.  I am the girl who sang, ‘Fame- I’m gonna live forever…’ at age 10, and truly believed it.  I wanted to be a star – all singing, all dancing, all daahhhling.  Limelight was what I lived for.  Anyhoo.  People change.  I have spent the last decade trying to hide, trying to avoid being noticed at all.

When my 40^th arrived and it was my chance to be the star- if only for one night- I declined the  leading role, and went for a very low key, family thing and a quiet little lunch and a few afternoon cocktails with one of my beautiful besties.  All my friends threw parties for their 40ths. I didn’t understand myself, not feeling ready to throw myself a party, I mean, what was I waiting for?  Much contemplation followed.

After rummaging around in my feelings and unpicking them, I figured it out.  My life had not turned out the way I thought it should have.  I was feeling unsettled, because at 40, my actual real life bore no resemblance to the one I had imagined years before.   I thought I’d have it all together by 40.  Er, no.  

My life had been on hold.  I had been so busy with the kids lives that I had stopped living my own.  I had been exhausted for years.  I hadn’t been looking after myself.  I was out of shape physically and spiritually.  I was totally depleted.  My idea of fun was a Chinese takeaway and early to bed.  I had no career, no job.  I couldn’t (and wouldn’t, even if I could!) call myself a housewife, since I did no housework, and  some days, I wasn’t even sure if I was a wife, since I had very little to offer that he seemed to value.  Even worse, I found I didn’t really care whether he valued me or not.  There was a lot of resentment, that I had the shitty end of the stick in our marriage.  When all your energy (hardly any at that) is used up just getting your kids up and off to school in the morning, there’s nothing left for anyone else.  I felt underappreciated and angry.  More on that another time maybe.   I just wanted to get through my day, with the kids fed and in one piece, so that I could get to sleep.  This was not living.

Shortly after my 40^th birthday, we cleared out the loft at our old house.  Amongst many treasures, we found lots of photos.  BooHooPapa and I have been together since 6^th form, so he had lots of photos of a younger, thinner me.  Looking at those photos, I was struck by how gorgeous I was.  I’m not saying that in a vain way – I’m really not.  Go right now and look at a photo of yourself aged 18, and I promise, you were gorgeous.  Because *ALL* 18 year olds are gorgeous, they just are.  And so was I.  

 And yet, when I was 18, I thought I wasn’t thin enough, or pretty enough, or anything enough.  At 18, I looked to the future with hope that one day (and definitely by the time I was 40!) I’d grow up into the person I thought I should be.  I felt sad, remembering this not-enoughness.  If only there was a way to get a message from your 40 year old self to your 18 year old self – DAMN, would I give that  bitch a talking to!  And I realised this: that one day, twenty-odd years from now, I will look at photos of myself at 40 years old, and think I was gorgeous.  As I am right now.  And it suddenly dawned on me, OH MY GOOD GOD, I have just spent my entire life not doing things that could have been fun, because I thought I wasn’t this enough or that enough – what a RIDICULOUS waste.

So I thought about the things I had always wanted to do, and set about doing them.  Not major things to anyone else, maybe, but exciting for me.  I wrote my articles for the freebie mag, started my blog, went to see Adam Ant (it was like I was 9 years old all over again!)  I started volunteering at my kids’ school, which I love.  And I got busy looking after myself.  Eating better, sleeping earlier (if not all night!), getting some exercise and chilling out.  Listening to ‘Love Action’ by The Human League really loud on my ipod.  Singing in my kitchen.  Pinteresting.  Reading.  Listening to podcasts.  Meditating.  Power-walking around my neighbourhood like a loon.  Smiling at dogs and waving at babies.  Planting sunflowers.  Tweeting under an alias.  Humming in the supermarket.  Living my life!  I’m fortunate to have had the time to do these things this year.  After being at home with the girls for these past nine years, I decided that I deserved a year off to do whatever I wanted to do, even if that was only napping.

Have the kids suffered because I put myself back onto the to do list?  No, of course not.  Is life now perfect?  Is it chuff.  In many ways life is as shite as ever.  Money-wise, we have had an awful year.  And recently there have been extra challenges to overcome, in that I am now a single parent Monday-Friday.  I have to make my own tea and everything.  But it’s a healthy tea.  While the kids are in school, the house still doesn’t get cleaned, but that’s because I am busy pounding the streets of my neighbourhood, working up a sweat and a good few endorphins, blasting my ears with fabulous 80s grooves and feeling like I am in the video.  I feel so much better for it.  And I lost some weight too. Win-win.

Mamas, put on your own oxygen mask first, before helping others.  If we diminish ourselves by ignoring our own needs, there’ll be nothing left of us worth having by the time we are in a position to really give back.  Fill your own cup first, so that you can nourish others from the overflow.  Just go, ‘Wooooooooooooooooo!!!  I’m doing it!!!’  Not everyone will like it, some people will slag you off behind your back or even to your face – so what???  You might make an arse of yourself - again, so what???

In the words of Hunter S. Thompson, “Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside, in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming, ‘Wow! What a ride!’”

If your question is 'Shall I?'  Then let the answer be a resounding YES.

What are you doing for yourself today?

Happy Birthday to Boo!

It was Boo’s birthday earlier this week:  7 years of Boo on Planet Earth - in body if not in spirit!  She had a birthday party a couple of weeks ago, shared with Peeka, as their birthdays are about 4 weeks apart, and Boo only wanted to invite 3 friends.  ‘I only want my BFFs,’ she explained.  In the past I might have persuaded her to invite more people in the name of building social bridges, but I’ve come to feel that this has to work both ways in order to work at all, and Boo doesn’t get very many invitations.  So 3 BFFs it was, plus Peeka’s all-female band of beauties.  The girls enjoyed their party: Peeka made the most of her moment in the limelight and Boo just loved seeing her friends out of school, which happens rarely.  During Boo’s birthday song, as they brought in her cake with its 7 candles aflame, she let out a really loud and mischievous laugh, and when we had all finished singing, she shouted out, ‘I’m going to blow out them NOW!’  Those darn candles were tricky little things, and BFF#1 started blowing too, to help Boo get the job done.  Boo added, for clarification, ‘with a little support from [BFF]!’ which made us all chuckle.  What 7 year old uses the word ‘support’?!

On the day of her actual birthday, Boo was happy from the moment she woke up.  Days like these are so precious.  It’s not just because she is easier to manage when she’s in a good mood, though she really is, and the break from our daily battles and frustrations was, admittedly, most welcome!  No, the best thing about a happy Boo, for me, is the very knowing that she’s happy.  I spent most of Boo’s early years wondering what she was thinking, how she was feeling.  She was an enigma.  The extreme moods I could figure out, but unless she was very happy or very unhappy, I didn’t really know how to read her.  Now that she’s 7, I am beginning to get better at working out how she might be feeling, but she can still be a bit of a mystery to me and I get it wrong pretty often!

On her birthday, Boo was definitely happy.   I keep thinking about her birthday face and it makes me go all gooey-hearted.  She just couldn’t hide her delight.  She had no clue what her presents would be, because as much as I had tried to coax out of her what she would like, she gave me no inkling what to buy.  She had been asking repeatedly for a ‘Moshi Membership’ since her last one had run out about 3 weeks ago, and Grandad had volunteered to step in and make that happen, but nothing else had even been mentioned.  I’d just had to guess, and thankfully I guessed right.

At bedtime, the night before Boo’s birthday, she seemed pre-occupied, restless. This week at school, one of her classmates had tripped over another pupil and broken his arm, and Boo had been really shaken up by the sight of paramedics with stretchers and ‘medical stuff’ tending to him.  The whole class had obviously been really upset and concerned for their friend, and Boo’s support assistant reported that Boo had been particularly distressed by the incident.  I guessed that this was what was on her mind.  I snuggled up in bed with her and asked, ‘Y’ok Boo?’  No answer.  I thought I’d try to redirect her attention.  ‘Are you looking forward to being 7, Boo?’

‘Huuuuuuh,’ came her unhappy groan in reply; a pained, anxious expression on her face.  Her eyes began to fill up with tears. 

‘Are you worried about something?’ I asked, tentatively, because usually when Boo is upset, the last thing she wants to do is talk to me about it, and me asking about it is often met with angry shouting through gnashing teeth.  After a long pause, she turned to me, wide-eyed and fragile.

‘I’m worried that I won’t like my presents,’ wailed Boo.  At that moment, I got it.  We had been banging on about her birthday all week (her sisters for a lot longer than that!) because we were excited for her, but what we had actually done was put pressure on her, we’d made it too big of a deal.  She was anxious.  And, those birthday packages could contain anything!

‘Don’t worry Boo,’ I said, stroking her forehead.  If you don’t like your presents you don’t have to keep them.  You can swap them for something you do like.  She looked relieved, smiled at me and said,

‘You can go away now.’ 

So I did.

 The next morning, 6.20am came, and in lolloped Boo, quietly squeaking, ‘It’s my birthday…are those my presents?!’  She got straight to work, flanked by her inquisitive sisters, who were impatiently nudging her to get on with opening the next, and the next.  I love the way Boo opens presents.  She tears into the wrapping paper urgently then takes a few seconds to examine the contents.  She isn’t bothered by the social graces of gift-acceptance; if she doesn’t like it, she just sets it aside and moves on.  If she does like it, then time stands still, we must p-a-u-s-e.  She takes her time to study all the intricacies of the given thing, turning it over in her hands slowly, reading everything printed on the packaging.  If it’s a book, then she sets about reading it, there and then.  This makes her sisters very twitchy- they are too eager to see what else hides in pretty paper and get ripping!  Boo takes her own sweet time.  So, with this in mind, I saved about half Boo’s presents for her to open after school – we have enough trouble getting there on time as it is!  The big hit of the morning gift-opening session was a ‘My Little Pony’ Wedding Castle (they have boy-ponies now, you know!) complete with bride and groom.  She loved it so much that bride and groom had to accompany Boo to school, to be shown and told.

I knew that the fat envelope containing Grandad’s card and the longed-for Moshi Membership had to stay hidden until the end of the day, when all the gifts had been opened, the birthday tea eaten, the candles blown out and the cake shared.  There was no way we’d get through any of those traditions if Boo got her hands on that envelope – she would be glued to the computer and parting her from it would be messy.  In fact, to avoid the messiness, I had decided to keep quiet about it until the next morning, but then I cracked.  She asked and asked and I hated to see her disappointed puppy-face, so I told her that Grandad had sent the very thing she wanted, and she could play on her computer game first thing in the morning.  But Boo had to see it for herself.  I brought the card up for her to open and she was over the moon.  We talked about our rules for waking up (stay in your own bed except if you need the toilet, try to go back to sleep if it’s before 6am, if you can’t sleep you can read, no DS or other gadgets before 6am, no computer before 6am) and said goodnight.

That night was a rough night, with Peeka, mainly.  All the girls have had snotty colds and coughs this week – Pips had had the day off school after being up most of the previous night with a high temperature and a persistent bark.  So there were various gettings-up to sprinkle Olbas oil on pillows, blow noses, administer medicine and refill bottles of water.  Peeka woke us up with her thoroughly miserable crying a couple of times so Mr BooHoo had gone to her and fallen asleep next to her in her single bed (oof).  He woke up in agony, welded to the sharp edge of the bed-frame, at about 3am, and was shuffling back to our room when he saw that Boo’s light was on.  

He peeped around her door and found… no Boo.  Her new 250 piece jigsaw puzzle had been opened and completed -it was displayed proudly in the centre of her bedroom floor- but Boo herself was nowhere to be seen.  Then he heard music from downstairs, and upon investigation, he found Boo, sat at the computer, playing Moshi flippin’ Monsters.  He turned it off and frogmarched Boo back up the stairs.  This was when I woke up.  What a racket.  Boo was not even slightly amused that her fun had been so abruptly curtailed and the two of them were having a very loud argument about it.  It took me half an hour to talk her down from possibly the angriest I have ever seen her, to a point where she could be calmly unhappy.  I lay next to her and rubbed her tummy until she stopped crying.  I woke up about an hour and a half later, aching all over from lying right on the edge of the bed with Boo’s feet on my legs, and staggered stiffly back to my own bed.   

We managed to lie in until 8.30 after all the comings and goings in the night – for a change, the kids were as exhausted as we were!   Boo struggled to wake up, having missed so much sleep, but when kisses and sunshine streaming in through her window failed to rouse her, all I had to do was whisper in her ear, ‘If you get up now and have some breakfast, you can play on the computer afterwards,’ and she was out of bed like a shot! 

Funny Boo.