It’s been raining for days.

Not that I’m complaining; not when the tanks are filling up and there are puddles covering the paddock, making the ducks happy. Not when the garden is thriving and the grass has gone a pretty green colour, as the raindrops sparkle in the light. Not when the sky is darkly dramatic and interesting to watch.

Still, it has been raining for days and being a country girl, it feels like it should be an auspicious start to May and the middle of Autumn, the season of hot soups and hot water bottle nights.

The trees have dropped their leaves and stand bare naked, inhabited by crows in the early morning light as we drive Amy to school. Birds nests stand out in stark relief against the sky as I wonder about stopping and photographing them, before the rain falls down ever harder and I huddle inside my jacket in the slightly steamy warmth of the car.

And it continues to rain.

I dream of my grandmother nearly every night and wake up with a headache and scratchy eyes, damp patches on my pillow. I watch her die, again and again, before dreaming that she is alive and all is well again.

I replay old scenarios in my head, the post death fallout that I was subjected to and wonder that it has the power to hurt me all over again.

Anne Lamott tweets:

If people wanted you to write warmly about them, they should’ve behaved better.

And I hold onto that when I contemplate writing essays about things that hurt, in an attempt to lance the wounds that fester. Yes, I’m angry with you. I’m still angry with you – all of you.

In the middle of all of this, the fetus continues to grow, while I wait for the end of winter. Her birth will herald the coming of my spring and I cannot wait.

In the meantime, it continues to rain.

Through highschool, I was slim, with pert breasts and long legs. I couldn’t see these things – all I could see were the stretch marks on my hips and breasts, the dark hair that grew on my legs and the fact that my arms were freakishly long, with a tendency to wave around when I spoke excitedly. Not to mention the standard teenage pimples and that I thought I was horribly ugly.

I was also smart and opinionated, with dark hair and eyes – not something that the boys in my school were lusting after. When you’re fourteen, your body image is tied up in what people think of you, and what you see in the mirror is not your reality.

Like I overheard one boy saying “Nice enough body, but a shame about the face.”

Being a teenager is not designed to make you feel good about yourself.

The one thing I had going for me though, was that I didn’t gain weight. Somehow, inside my head, that became the most important thing about me. Of course, I had Ehlers Danlos Syndrome (undiagnosed) and a tendency to vomit up rich food with little warning, so that probably helped.

Through high-school, I had a steady boyfriend who found me attractive, but I thought he was lying. It’s a hard time for girls, at the cusp of everything and having relatively little confidence in themselves.

Once I finished school, with all of my self-esteem issues firmly intact, I met Nathan. Lovely, adoring Nathan, who thought I was gorgeous and didn’t see any of my supposed flaws. I thought he was blind. He thought he was incredibly lucky to be having sex with me. Win/win.

It was later, after I got pregnant with Amy and was so terribly sick, that my body issues began to surface again. The fact that I lost all of my baby weight within a week of giving birth to her was apparently an admirable trait to everyone else and I was determined to stay as slim as I could.

Amy made this job easier by screaming lots and effectively making sure that the first twelve months of her life included no sleep, long long walks and minimal food. My weight was one of the few things I had control over. I dropped down to 53kg – which on my 173cm frame, made me look like a skeleton.

I wasn’t healthy, but MAN, I was skinny and that’s what people noticed – even Nathan noticed, although he wasn’t admiring, so much as worried that I wasn’t eating enough. He was right – but what did he know? Skinny was the new beautiful.

After Isaac was born, it took a little longer to lose the baby weight and when he was a few months old, a family member commented on how great I was looking. She thought I looked amazing, whereas I thought I needed to lose weight. Incidentally, Nathan thought I looked just fine. I lost the weight anyway – losing weight has never been hard for me. It’s that pesky crappy digestive system you know.

Late last year, I finally gained some weight. A combination of grief, well managed nausea and an excellent diet bumped my weight back up to the healthy range. All I could see was that my clothes weren’t fitting right and that I was softer all over.

Complaining to Nathan did no good – with the extra weight I was carrying, all he wanted to do was take my clothes off and take me to bed. That’s how we managed pregnancy #3.

I thought I was soft. He thought I was sexier than I’d ever been.

I had an epiphany at that point. I’d always been able to see that curves were sexy on other women, but not on me – never on me. My goal was to be as slim as possible, all of the time. I didn’t even realise this – my drive to be slimmer was subconscious.

It’s been hard to admit to myself, that yes, there was always that subconscious desire to lose weight. It never stopped me eating what I wanted, or made me throw up, but it was there, under the surface. My self-worth and body love were always tied up in how flat my stomach was. I didn’t actively think about this, or talk about it ever, but it was there. The subtle food choices, the exercise, the glaring at my stomach in the shower.

When I miscarried pregnancy #3, I realised that being slimmer had never made me happier. That slimmer had, in fact, made me more miserable, and that slimmer was all about control, not about how I looked.

I was nearly 7kg over my “ideal weight” according to my subconscious when I fell pregnant with this baby. Morning sickness made me lose 5kg really quickly and it was both a physical and mental battle to stop myself falling below 60kg. I managed it, but only because I was actively aware of my brain trying to sabotage my body.

I’ve never spoken about this and it’s only recently that I’ve admitted this to myself. Writing this out has been hard. When “slimmer” is what is thrust at you, over and over again, it is easy to internalise “slimmer is beautiful” and hard to learn that confidence is beauty, not body mass index.

This pregnancy has been good for me. It’s scary to watch myself gain weight, but I’m proud that I actually am and that I’m feeling relatively good about the whole thing. It helps that I’ve always found the curves of pregnancy sexy, even on myself. It’s post-pregnancy I struggle with.

I learned some things about myself recently. One is that I am happier and healthier when I weigh more. That I heal faster and I bounce back from illness faster.

Another is that curves are sexy. Even when they’re on me. That while my breasts sag after breastfeeding two babies, my husband really doesn’t care. He just wants me to go to bed with him, especially if there is no likelihood of my hipbones leaving bruises on him.

I learned that my brain will play tricks on me and that it is very easy to become obsessed with numbers. How far I walked on the eliptical, what my weight is today, how many calories does this lunch contain. I also learned that I can ignore these things, eat my favourite cheeses and not feel guilty about adding cream to my fruit.

I learned that what I look like inside my head, is not how other people see me anyway, and my version of weight gain will make some women hate me. I never said my subconscious was sensible, or rational.

And finally, I learned that it is most important that I love myself first. That how much I weigh has nothing to do with how fun I am to be around, and that no one likes it when I am skeletal and sick, least of all me.

Body love. It’s important, and it’s also really really tough.

Isaac is watching Peppa Pig. I’m sure this would be fine, but he’s watched the same episode a dozen times already this morning and the way we’re going, even if I turn the computer off, he’ll be able to repeat it back to me word perfect.

I have high hopes for his future, with an obsessive nature and a memory like his. Maybe theatre, or tax accountant. I’m not quite sure yet.

I’m dealing with the Peppa Pig obsession by doing my very best to drown it out with music. This is probably not good parenting, but anything that keeps me sane is something worth pursuing.

Yesterday, I felt like killing my children.

Instead, I burst into tears and cried hard enough to make my nose bleed. Then I slammed the back door and cried some more, before going in to massacre the garden. Weeds died, tomato bushes were pulled and hung and everyone held their breath for a little bit.

I was okay, and when my children joined me 10 minutes later, they’d stopped whining and fighting with each other, and the urge to bang their heads together had passed.

Usually, things flow along nicely, autism or not, until something comes along to throw a spanner in the works. Five days of diarrhoea from Isaac* and an ear infection and some serious attitude from Amy, topped with never-ending morning sickness** and falling apart joints, PLUS cold weather and a dead duckling ***, well, it’s not always smooth sailing.

Autism is funny like that. Routines are kept, right up until the point in which they can’t be anymore, and then everything falls apart. Amy was angry that she couldn’t go to school and was stuck at home with her annoying little brother, while Isaac was annoyed that he wasn’t getting any free time away from his sister and both Nathan and I were annoyed that the children weren’t quite sick enough to lay down quietly, but were too sick to send outside to play.

Down came our house of cards.

This is how things work sometimes. This is how life works, sometimes. Everything is fine, right up until the point where it’s not.

We’ve reset things now, starting from the beginning again. Amy is back at school, Isaac is watching Peppa Pig on repeat and I got to eat breakfast this morning without anyone screaming and attached to my leg.

I think things are looking up.

—

* Laxative worked, we get to avoid hospital! Now we just wait to make sure the same problem doesn’t arise again.
** 17 weeks now and still feeling nauseous most of the time. No vomiting, because I’m still well medicated, but the meds have the lovely side effect of giving me a nearly permanent headache.
*** Inside duckling died. I have no idea why, it was fine at bedtime and dead in the morning. The children didn’t seem bothered. They’re very good at living in the moment.

Last night I received a phone call from our ever lovely case worker at ECIS. She was keen to know whether Isaac would be involved with Early Intervention this year and in what capacity we were able to attend.

During the course of the conversation, Isaac’s bowel issues came up and she asked whether we were being seen by the Incontinence Clinic at the Royal Hobart Hospital.

No? We didn’t know about the incontinence clinic (even though we have a child with a constantly leaking bowel), or that we could have been referred to them. Our Paediatrician, despite working at the same hospital, never bothered to let us know about it. Then again, it’s a bit hard to refer someone on to a clinic when you refuse to listen and take the issues seriously.

In hindsight, OF COURSE there is an incontinence clinic at the hospital. Doesn’t that just make SO MUCH FUCKING SENSE?

It feels like we’re coming at all of Isaac’s medical problems from three steps behind the ball. We don’t know half of the information we ought to, because no one bothered to listen to us long enough to find out what we need.

We see our new Paediatrician in a month. This guy comes highly recommended, both from our GP and more recently, from our ECIS case worker. He is, by all accounts, good at what he does.

This will be a change for us.

Isaac is a complicated case. He has Ehlers Danlos Syndrome. His joints are lax, his gut is as well. He has issues chewing and prefers soft foods. He has Autism, but is high functioning enough that our last Paed doubted the diagnosis. Then Isaac will spend 10 minutes repeating a TV show script over and over to himself. He has sensory issues surrounding food. He doesn’t like new people, or crowds, or any noises louder than normal speech. His bowels don’t work correctly and no one knows why yet.

He is complicated.

But aren’t all children complicated and full of contradictions?

We’ve been telling doctors for over two years about Isaac’s bowel issues, being brushed off every time. Finally, when we realised that our Paed hadn’t rescheduled us after we couldn’t make our last appointment (No, we’ll send you out a letter, yes, okay, thank you, bye!) we demanded that someone else do something.

Having to fight for every step that we’ve taken on this journey with Isaac means that I am tired. It means that I don’t trust the medical professionals and their opinions anymore. It means that I have tried everything in my bag of tricks and still come up with nothing.

It means that I really need this new doctor to DO something and MAKE THINGS WORK.

Because at this point, Nathan and I are left looking at each other, exclaiming that OF COURSE there is an incontinence clinic and OF COURSE, no one thought to maybe refer us to it. Despite, you know, the INCONTINENCE ISSUES.

Argh.

I write here, a lot. In fact, WordPress tells me that I have published 1061 (now 1062) posts here in the last four and a half years. Hundreds of thousands of words, hundreds upon hundreds of stories.

But some things are not my story to tell and so I walk away from the computer, tired with real life and unable to sink into storytelling like I otherwise might.

There’s things going on at the moment, family things, and while I could blog them if I get permission (and may, yet), it’s Nathan’s story, not mine.

I’m tired, Internet. I’m tired of dramas and pitchforks rabblerabblerabble and feeling like everything I mention online requires weighty substance. I’m sick of justifying why I’m not blogging about charity X Y and Z, or why I’m not donating time, or making more noise, or Doing Good Works.

Can’t I just write stories, without feeling the pressure to give them a moral resolution.

(Yes, yes I can and I will burn my guilt on the pyre of your pitchforky flames)

And in the scheme of things, are our Internet rabblerabblerabble’s terribly important?

Tired.

Out of energy.

In the last couple of months, I’ve seen a few posts about the tracks that haven’t sat terribly well with me. Bloggers trying to justify why they’re not reading a certain other blog, or why they’re not commenting, or not driven to subscribe.

And I’m here to say:

My blog is not about you, or what you want.

No, it really really isn’t. It REALLY isn’t.

I write my blog because it makes me happy. I’ve slowly developed a like-minded community here, who enjoy what I write and have followed me along in this journey. Frankly, this is awesome and this is what I want.

But if you think I am weeping at night, wondering why you are not reading my blog, then, I’m sorry, but you’re sorely mistaken.

If my blog doesn’t do it for you, then move on. Don’t whinge about what I need to change (or what any blogger needs to change) in order to get you as a reader. Find someone else who is more your cup of tea instead.

I know that a lot of topics turn a lot of people off. For the record, no one is holding a gun to your head and making you read.

People blog for a lot of different reasons. I blog for connection. I want to connect with those people who read my words and get something out of it. If I write a post about the hell of PCOS periods, or the miserableness of watching a pregnancy slide down my legs in the shower, then I am writing those words for myself.

However, I am also writing them for the people out there who have felt those same emotions, or who find the post later and are so grateful that someone else knows how it feels.

I’m not writing for the candy-floss readers, who want my blog to be funny and lighthearted all the time. My blog reflects my real life, not the life I wish I was living.

There are topics out there that turn a lot of people off. Poo seems to be the latest DON’T YOU DARE WRITE ABOUT IT.

I’m here to tell you that if shit is a big part of your kids life, then shit will make it onto the blog.

And I’ll admit – I am sensitive in this case. Isaac’s bowel issues have gone from moderately annoying, to severe and impacting on our lives and I am at the end of my tether.

You can’t decide what I can and can’t write about, just to fit it in with your pretty sensibilities.

You can make the decision to only read what you want to read and not be an arse about it though.

I love my readers and my community here, but I will never be writing about pop culture and the pretty shiny things in life. I have one kid who scales the cupboards and steals my chocolate while screaming like a banshee, and another kid who can’t chew properly, can’t poo and won’t eat most food, while I spend a lot of the day downing anti-nausea drugs and trying not to puke, dislocate or miscarry.

THAT is my real life. THAT is what is happening here on a daily basis.

And if you don’t want to see that reflected in my writing, then I’m not sure this blog is for you.

When Isaac was five months old, way back in June of 2009 (right before my grandmother died and part of my family decided that they really didn’t approve of me and everything went to fucking hell) Isaac was hospitalised for a suspected intussusception in his bowel.

The ultrasound was inconclusive, but the screaming (good God, the screaming) was not and he was admitted for observation.

In the morning, whatever had caused the pain had eased, and we were sent home, none the wiser as to cause.

Then life went to hell for a while and a few years later, we are finally clawing our way back to some semblance of normality. Since then, both children have been diagnosed with autism, as well as Ehlers Danlos Syndrome – two added things that make everything else very complicated.

Isaac has bowel issues, that include, among other things, constant leaking. He’s in nappies and we’re trying to transition him to underpants, but when he is leaking poo nearly constantly, it is not all that easy.

We’ve been trying, with our Paed, to get Isaac’s issues sorted (bowel issues, autism issues, hypermobility issues) since some weeks after his suspected intussusception. Considering that was two and a half years ago now, I think we can say that we’ve failed. Or that we’ve been failed, because the medical system seems to see us, scratch their heads and send us away to “wait and see” or to “deal with his sensory problems and see what happens”. Basically, here is the too-hard basket, sit in it for a while.

He’s not constipated and nothing works to clear his bowels out. Nothing, nothing, nothing. We don’t have a day in which I don’t change a dirty nappy every hour, or underpants every 20 minutes. It’s wearing. It’s frustrating and honestly, I’m a little sick to death of it all.

This afternoon however, I went back to our GP (who until this point, assumed that the Paed was managing the children, because he didn’t see them except for sore ears and immunisations). I dumped the entire issue in his lap and requested to be referred somewhere better. To someone who specialises in bowel issues, bonus points if they know children as well.

And he did.

I’m not sure whether to laugh or cry, because it was that easy. It’s been over two fucking years of this bullshit – could our Paed not have sent us to a specialist YEARS AGO?

Why, yes. Yes he could. But no, no he didn’t. And life was so chaotic at that point, it was easier to let someone else do the managing for us.

It’s a waiting game now, again – but this time, there might actually be light at the end of the tunnel.

Or at least, someone who knows what they’re doing.

Tomorrow, my son turns three.

This is a huge milestone for me, as well as him. When I was 24 weeks pregnant, I got an infection and started to bleed. After a positive fetal fibronectin test, I was given steroids to mature his lungs just in case.

Nothing else had gone right during my pregnancy, so I had no reason to believe my pregnancy would. I distanced myself from him, even as I sobbed in the hospital room at 2am, trying to breathe through the crampy contractions.

Eventually the antibiotics did their job and Isaac stayed in utero for the recommended number of weeks, before being born in a hurry, screaming his displeasure at the world.

Oestensibly it was a happy ending, but the months of my pregnancy had been spent so close to cancer and death that I couldn’t quite convince myself that it was all going to be okay. I spent a lot of time waking up with a racing heart, before laying my hand on my sleeping son, holding my breath and feeling his chest move.

Five months after he was born, my grandmother died and for a time, it felt like the spectre of death was hanging over us. There was no rhyme, nor reason to death, so why should I expect to be spared any more heartbreak?

It took a long time to stop worrying that Isaac was going to die, even longer to accept that it was my anxiety and depression causing the fears, not anything realistic. Of course, it didn’t help that he was a boy, prone to breaking his bones and smashing his head against sharp objects.

Three years later and finally, I’m pretty sure it’s all going to be okay.

My anxiety and depression have eased and while I can’t predict the future, I can stop myself imagining everything bad that might possibly happen.

It feels like we’ve finally reached a period of calm.

It’s rather nice, actually.

Apparently when you have a fortnight as crazy as I did, you get to the end of it and your mental state is fried.

Who’d have thought it?

In lieu of blogging, I’ve been spending all of my time drinking tea and reading books (Diana Gabaldan’s “Cross Stitch” series) and contemplating my lack of energy. A little bit can be attributed to depression, a lot of it was sheer exhaustion. Today is better, thanks to a psych appointment yesterday, increased sunshine and warmth and an hour planting flowers in the orchard.

Admittedly my pear tree isn’t looking great, but it’s the first year in the ground.

Isn’t my view pretty at the moment?

I got my second set of HCG results back yesterday. Sixteen. ARGH. I’m still wanting to throw up on and off, which has to be my reaction to the progesterone in my system. It’s unpleasant, regardless of what is causing it.

My mental recovery has been relatively easy. Because I’d bled from the very beginning, I wasn’t entirely convinced that my pregnancy was going to be viable. Being proved correct wasn’t what I wanted, but knowing that nearly every woman out there has gone through it makes it a little easier. Misery loves company and all that. Knowing that I wasn’t alone in things, that helped.

Thanks to our wedding gifts, we’re hopeful that we can get the toilet moved inside in the new year, which will be great. Another winter of freezing near to death in order to pee doesn’t appeal to me.

We’re down to two ducklings now. I started listing all of the things that might have happened to the other babies the other day and then went “huh. I am really not surprised.” It’s a harsh world for small bundles of yellow fluff.

I also bought myself some water colour paints. Now I’m just trying to work out if I have the energy to paint myself a pretty new header for here.

A week before the wedding, I got a positive pregnancy test, which was lovely and fantastic and completely unexpected. Seeing as how we weren’t planning on starting Clomid until January, a natural pregnancy was a bit of a shock.

But that’s okay – it was a good shock and I only told a very few people because I was spotting (my period started and stopped again, for those keeping track at home) and we weren’t sure what was happening.

Then of course we ended up in Hospital with Isaac; running around like idiots getting the wedding prep and I was quietly vomiting in the corners when I had the chance. So much fun.

We got married and while I spotted a little over the weekend, it wasn’t anything too major and I wasn’t bothered. Bleeding through an entire pregnancy with Isaac has raised my tolerance levels for spotting and such.

Monday, I made an appointment with my GP to get my pregnancy confirmed and an ultrasound scheduled.

Monday afternoon, I started to bleed relatively heavily – although not as heavy as a normal period, nor as painful.

By Tuesday, it had lightened up a little, to the point that I wasn’t certain that I’d lost the pregnancy.

Yesterday, I was still bleeding, but fed up with waiting for my appointment, I begged my GP to fax a referral off so that I could have an ultrasound ASAP to find out what was going on.

Nothing bothers me worse than not knowing. Limbo is a special kind of torture for me and that limbo of bleeding too much to feel safe in my pregnancy, but not enough to be certain of a miscarriage was hell.

This morning I got my ultrasound.

And nothing.

Empty uterus. No sign of pregnancy there at all.

Which is fucking ridiculous, considering I spent the morning throwing up, and got another positive urine test yesterday evening.

My body is fucked, you guys. It can’t do ANYTHING right.

I went back to my GP to have blood HCG done and he’s as baffled as I am.

Either I lost this pregnancy with minimal cramping and bleeding Monday night (unlikely?) or something weird is going on. Considering my body never falls on the easy side of statistics, my vote is for weird.

I know when we are likely to have conceived (within the limits of sperm life), because I’m anal and I chart everything, but something is amiss here.

Namely, the lack of fetus like material in my uterus. Or a uterus that looks pregnant at all.

Argh.

I’ll have my blood HCG levels back tomorrow lunchtime and if the levels are still pregnant (very likely) then I’ll have a second lot of bloods drawn on Monday to test and see if they’re going up or down.

But until then, I’m stuck in this limbo hell, bleeding and vomiting, feeling pregnant and bemoaning my stupid uterus.

And watching for signs of ectopic pregnancy, with increasing stress.