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.

 

Super Siblings (Part 2)

Pips, my eldest daughter, like many other first-born children, lived her first couple of years as an only child, hearing ‘Yes’.  Yes, we can go to feed the ducks.  Yes, we’ll paint pictures today.  Yes, we can go out for lunch.   Yes, yes, yes.  Whatever she wanted to do, the answer was usually the one she wanted to hear, because truly, there was no reason at all to say no.  It was just the two of us (when Daddy was at work) and a multitude of people to visit and places to go and things to do.  When we moved to the USA, our wings were clipped somewhat, not knowing many people to visit or places to go or things to do, but even so, it was just us two, and in our little bubble, we were everything to each other.  My whole world (inside that bubble) was about keeping my little girl healthy and happy, and so my answer to her many requests was pretty much always a ‘YES’.

Enter little sister Boo.  Suddenly, Pips had to get used to hearing the word ‘no’.  No, we can’t go out right now.  No, we can’t paint.  No, I can’t do a puzzle with you.  No, no, no.

I myself am a first-born child.  I can remember distinctly the day in 1975 that my little brother was born, at home, when I was two and a half years old.  I can remember hearing strange noises from upstairs, and when I went upstairs to investigate, I remember feeling a little lost and put-out that Nanna told me to go back downstairs and watch Playschool.  There is a photo, taken when my brother was just a couple of days old, which shows EXACTLY how I felt about having to share my Mum.

Poor little me, little girl lost.  I remember it clearly.  So I can understand why lots of kids struggle when they suddenly become a big brother or sister.  They are used to being the centre of the universe and then, BOOM, it’s all over.  I get it.  I think I spent most of my childhood feeling like life wasn’t fair.  I was convinced that my brother was the family favourite.  To say that I resented him at times, would be putting it mildly.  Interfering with my games.  Playing with my toys.  Messing up my stuff.  Being all cute and adorable whenever any adults were around, then spawn of Satan when they weren’t.  Ack.  But then, there were times I quite liked him too.

Pips’ early experiences of being usurped from her comfortable role as ‘One and only baby of the family’, were not all that different to mine.  There was some resistance.  There was denial.  There was flat-out refusal to accept it.  But eventually, the pieces of our lives which had all been thrown up into the air when Boo arrived, came floating down and landed in their new places.  All was well for a year or so.  Nothing much out of the ordinary to report.  Life with a baby and a toddler is not a piece of cake for anyone, but we did our best and we were fine.  We even decided to have another baby.  Life was good.  Relaxed, even.

Then it all changed.

Boo’s paediatrician had referred her to Early Intervention Services at 12 months.  Shortly after, she started receiving weekly physiotherapy at home (which involved putting Cheerios up the stairs and making Boo try to crawl up to eat them!)  I believed the intervention was unnecessary and ridiculous – that Boo would do things at her own pace in her own good time, (and she did, but little did I know how much time it would take!)  These sessions were just the beginning in a very long string of professional visitors to our home over the following years, including speech therapists, a specialist health visitor, play therapists, a clinical psychologist, occupational therapists, educational psychologist, officials from the education department, the school nurse… and many others whose roles or official titles I can’t remember.  Looking at it from Pips’ point of view, there always seemed to be someone coming round to see her sister.  Very early on in the process of Boo being assessed for a diagnosis, Pips asked me, ‘Why does nobody ever come to see me?’, and my heart broke a little for her.

 In those early years leading up to and after diagnosis, keeping Boo’s appointments felt like a full-time job.  Thank heavens for Early Intervention -professional help arrived from every angle you can imagine- but OMG it was exhausting!  Seriously.  If I’d had a job at that time, I would never have had the time to go there and do it.  Life as we knew it had gradually been taken over by this new way of life which was all about Boo.  Baby Peeka had been born into it and had never known any other way of life, but guess who was feeling a little pushed out, invisible, unimportant, insignificant, unloved? 

 Of course, I could see how Pips was feeling.  I honestly did my very best to compensate her in the midst of the madness.  I can truthfully say, that in terms of quality, focused one-to-one time, Pips has had more of this over the years than either of her sisters, because she has consistently needed and demanded it, (in a way that her sisters rarely have.)  But now that Pips is 9 years old, I have realised that it really doesn’t matter how much time, energy and attention I think I have given her; her perception (which is absolutely real and true to her) is that she has never had enough of it. 

Having a sister with Autism has affected Pips in many ways, and so as not to be guilty of gross parental overshare, I will just say that there have been struggles and there has been anger.  Pips has suffered several problems that have not been an issue for Peeka, who has never known any other way of life, and at 5 years old, isn’t quite aware of what others see when they look at her sister.  For Pips though, she is very aware, and isn’t quite sure which side of the fence she belongs on, theirs or ours.  At school, Pips is often embarrassed by the odd things that Boo does, when other kids notice.  Sometimes it’s hard not to notice.  Occasionally Pips has been teased at school about her ‘weird’ sister.  She doesn’t know whether to disown Boo or protect her.  She is angry at Boo (for behaving in a way which draws attention) and yet also angry that anyone would be so mean about her sister.

At home, we have grown to enjoy Boo’s ‘oddities’.  They make us laugh, but we don’t laugh at her – the laughter comes from a place of love and pure joy.  Pips laughs too, and will often ask me during our bedtime cuddle, ‘Have my sisters done anything funny today?’  But then at other times, she resents Boo’s quirkiness and is reluctant to see anything positive about her unusual behaviours, which she often calls ‘stupid’. 

‘I wish I was Autistic!’ Pips will cry out, when Boo gets to go to fun events, like a monthly club for local kids with disabilities, and a fabulous SEN playscheme for parts of the school holidays.  These are quality services where Boo can spend time with other kids who are different, like her.  When Boo is out we can do things with Pips and Peeka that we wouldn’t usually be able to do if Boo was with us; things Boo wouldn’t enjoy or cope well with.

Last night, cuddling at bedtime, I mentioned to Pips that I was writing this post about her, and asked what she thought were the best things and the worst things about having a sister with Autism.  There were no best things.  There were lots of worst things:

•   Boo takes what she wants from my room and ruins everything.  It’s not fair!  (It really isn’t.  We’ve even talked about putting a keypad on her bedroom door to keep Boo out.)

•   There is one set of rules for me and another for Boo.  And another for Peeka (True. That’s the way it has to be, because our expectations of each child reflect their age and level of understanding.) 

•   Boo hogs the computer. (True)

•   She makes mess.  (True)

•   She eats noisily.  (True)

•   She talks about Moshi Monsters all the time.  (True)

•   She tells the same jokes over and over again.  (True)

•   She ignores me when I ask her a question.  (98% true)

•   She chews my things.  (True)

•   She is annoying.  (Sometimes true)

After hearing her list of complaints, I gave her a big hug.  I didn’t really know what else to do.  Living with a sister with Autism is not easy.  Pips finds it very, very difficult.  And then she turned to me and said sadly, ‘If she wasn’t Autistic, she’d be my best friend.’

I think that means she loves her to bits.  At least, sometimes.   
I hope that one day, when she's older, Pips will realise that Autism can't stop them being best friends if they want to be.  

Pips' journey with her sister's Autism has been rough so far, and may get worse before it gets better, but just imagine the strength of spirit she will have built up by the time she reaches adulthood.  She will have spent her life overcoming daily frustrations, practising patience and learning acceptance of the differences of others.  She'll make an awesome best friend.  Queue forms here.

 

Super Siblings (Part 1)

Boo has two sisters, one older, one younger.   Peeka is her almost 5-year-old little sister.   Now, it makes sense to me that a child who was born having an older sibling with special needs would be very accepting of the situation, because she has never known any different.  And I think, in the case of Peeka, that would be true.  

Until very recently, our littlest girl didn’t appear to notice that there was anything unusual about her sister.  After all; Boo is Boo: it’s everyday stuff in our house.  I’m still not sure to what extent Peeka has noticed.  I do often hear her shouting at Boo in exasperation,  ‘Are you even listening to me?!’,  getting frustrated when Boo retreats into her head, ignoring the rest of the world.  They play imaginative games together – all on Boo’s terms of course, but Peeka is happy to be led, because she looks up to Boo,  her ‘cool’ big sister.  She has cool toys.  She has big Year 2 friends.  Peeka frequently declares on hair-wash night, that she wants to have hair as long and as straight as Boo’s (which is never going to happen, bless her curly little locks!)  It is sweet to witness her adoration, and yet bittersweet, because one day she’ll be aware that her cool big sister is possibly not all that cool in the eyes of most of the other kids at school.  Which is sad.  I wish those kids knew just how cool she really is. 

 A few months ago, I got this lovely email from the mum of one of Peeka’s little classmates in Reception (names changed):

Bit of a tricky one but I'm just going to come straight to the point!
Sarah was asking questions about Boo today. Why does she speak differently?  She's starting to become a lot more aware of children who might have learning difficulties or a disability and asked a lot of questions when she saw Children in Need things.
I just don't want to say the wrong thing and cause her to maybe say something to Boo. I doubt she would but you never know!
So, is there a way I can explain or do I just say nothing?
I'd really appreciate your thoughts! 

I thought that was so sweet of her.  And I answered as best I could, but you know what?  I don’t really know how to explain Autism to a five year old either.

Oh bless you both xx! I'm no expert but at home we have just said to Peeka & Pips that Boo has Autism which means she has a different kind of brain to them, so she doesn't think the same way or act the same way.
Having Autism means that she sometimes finds easy things hard (like running, jumping, writing, talking, listening) and she sometimes finds hard things easy (like reading, spelling, doing maths in her head and remembering lots of things.)
Boo is super clever but sometimes gets muddled up how to behave (like when to be loud or quiet) and she finds it hard to understand how other people feel, so Mrs Jones helps her when she gets mixed up at school.
Hope that's ok?! I might have a book somewhere I could lend you. So nice of you to ask- it is an awkward one, I am not really sure how to approach it myself to be honest! I sometimes wish they would talk about it at school cos kids aren't daft and know perfectly well there's something odd about the SEN kids!

 (A topic for a future post: why do mainstream schools often pretend that their kids don't notice that some of their classmates have special needs?  It baffles me.)

I didn’t have a plan for introducing the topic of Autism at home.  I’ve been wondering for a while now just exactly when (or whether!) to discuss it with Boo herself.  As it happened, the questions came from my eldest child at the dinner table, which floored me a little since I had ‘nothing prepared!’  Rather than try to sweep it under the carpet, I went for the breezy yet frank approach (see above), which I hoped would work for all three girls.  So now they know.  Significantly, Boo knows.  She knows she has Autism, and has never said another word about it.  When she wants to know more, I’ll be waiting.  But as for Peeka, the information she heard over pasta twists and meatballs that night, is enough for now.

 One of these days, like her little friend Sarah, Peeka will become more aware of the ways in which her big sister is different to other kids, which makes me a little bit sad, but also a little bit excited, because she will then begin to realise how amazing her sister with Autism is, and also, how special she herself is, for loving Boo so beautifully.  Living with a sibling with Autism is not easy.  It is confusing and chaotic.  Much patience is required.  You have to be able to accept that sometimes your turn never comes.  Sometimes there will be no bedtime story because Boo is having a meltdown.  You have to get used to people staring at your family in supermarkets.  Sometimes your mum and dad are mega grumpy because they only had 3 hours sleep.  Sometimes your Disney Princess comic will be drawn in because Boo took it without asking.  Sometimes you will have to get up at 4 in the morning to see why Boo is laughing her head off.  You already know (because your mum says it frequently while brushing Boo’s teeth in the bedroom) that sometimes you have to bring the mountain to Mohammed.   It is not easy to live with an Autistic sibling.  Peeka makes it look easy.  After all, it’s all she’s ever known.

Thankyou to Happy Home Baking for the yummy pasta image!
http://happyhomebaking.blogspot.co.uk/