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.

I am getting married in just over a week.

I discovered today that we don’t have as many tables as I thought we ought to, seating is a bit iffy (picnic rugs anyone?) and everything is needing to be tied together. If we add in an IRL fight with someone (and I am RIGHT and you are WRONG and being an IDIOT) and a Big Thing* happening at the same time, I have my hands a little full.

Okay, they’re a lot full.

Adding to this, the entire house has been stricken with some form of ‘flu and we’re all whining at each other, while we fight for space on the couch and which DVD we want to watch.

To top it off, I appear to be getting my period. Cycle day 57 people. FIFTY FUCKING SEVEN. Tomorrow should be cycle day one. ARGH.

And the cherry on top? I dislocated my GOOD knee yesterday.

Never mind Internet, never mind. It will all be FINE, but you know. If bursting into tears while venting during a DM conversation last night is any indication, I’m a little stressed.

+++

When I was a kid, each year before my birthday, Nan would take me to a musical at the Theatre Royal. It would make up part of my birthday present and frequently we would get front row seats, which was very exciting.

One year, the musical was Les Miserables and it was a HUGE performance at the Derwent Entertainment Centre. It was even more exciting because Nan was part of the cast, singing in the choir. I spent weeks down at her house before hand, listening to her sing while she learned all of the songs.

After it finished its run, Nan gave me CD’s with the entire performance recording on them. Somewhere in a couple of house moves and a very active destructive toddler (Amy) I lost two of the CD’s.

But, for a long time, Les Miserables was my go-to music when I was stressed.

Screaming baby at 3am? Play Les Mis.

Angry at Nathan for working all night and then needing to sleep during the day (the cheek!) Play Les Mis.

Sing the songs, listen to the words and calm back down.

+++

I hadn’t listened to any of the songs from Les Miserables for years now.

Nan is dead and some things just don’t need poking.

But, I was talking to Nathan the other day and I mentioned “Lovely Ladies” as a song to make you smile, in a warped sort of way. And so I found it on Youtube, along with the entire musical score, care of someone uploading it.

And you know what?

It still works on stress. Of course, it makes me sadder now, but there is nothing like a good musical for making you feel ever so slightly better.

In a warped sort of way, anyway.

*I should be able to announce the Big Thing early next week. I’m just waiting for some things to fall into place.

A month ago, I was talking to my therapist. Oh yes, I’m in therapy now, to learn how to manage anxiety attacks and get some support in the middle of this chaos that I call my life. Anyway, I was talking to her and I said:

“I have to learn to let it go. My children’s behaviour is not my behaviour and I cannot control it. I can’t fix their meltdowns, even though I can do damage control and try to prevent them in the first place. I am their mother – it is my job to support and guide them and show them what acceptable behaviour is. I cannot force them to act in a particular way.”

It was an epiphany for me, because until I articulated it, I didn’t realise how much guilt I was dragging around. Guilt that my children are louder in public places, that Isaac will scream and thrash, that Amy will lose her temper and shout at me and that they both have a particular set of wants and needs that are not always the socially acceptable thing.

It’s ridiculous really, to be feeling guilty because when my son melts down, I can’t make him silent and approriate.  Because I can’t change his behaviour to suit my wants – all I can do is sit next to him and wait for it to pass. And the looks I have gotten, when I’ve done this.

Contrary to popular belief, I am not a bad mother when I let my son scream in public. I am not a bad mother when my daughter shouts at me and I am not failing to provide discipline when there is yelling and screaming in the supermarket.

It is not bad parenting that my children didn’t sleep through the night. It is no fault of mine that Amy has trouble falling alseep, or that no one will eat greenery.

My children are small humans. They have wants and needs and likes all of their own, that I don’t get to control. Not even as their mother.

I am fed up with society telling me that I am wrong. That I am failing in some way, because my children are not round pegs. And I am also sick of parents with entirely neurotypical children, assuming that they have the “right” way of parenting, because they don’t have the struggles that we do.

I am HAPPY that your child loves kale. I truly am. And I LOVE that your kid prefers corn on the cob to sweets and anchovies. But don’t delude yourself into thinking that it’s something you’ve managed as a mother. It’s LUCK. You are LUCKY. And that is AWESOME, but you are no better than the rest of us.

I had to reassess my thinking tonight and instead of thinking about age-appropriate food, I had to think seriously about what my son would eat. And then I made the decision to trial baby food again, because we have feeding issues. We have SERIOUS feeding issues and I am sick of feeling like a bad mother because my kid won’t – CAN’T – eat anything that I want him to.

We saw a speech pathologist last week, who confirmed our suspicions. On top of Isaac’s textural anxiety regarding food, he has swallowing issues.

Is this the autism? Or is this the Ehlers Danlos? We don’t know. What we are pretty sure is happening, is that he is having trouble firstly chewing food and secondly, moving it to the back of his mouth to be swallowed.

His eating difficulties are not my fault. They aren’t something that I can force to disappear, even though we will be doing serious therapy for it, along with some medical tests to make sure that there are no physical reasons for the swallowing issues. But I can’t fix them. I can put the tools in place for Isaac to learn to fix them himself, but I cannot swallow for him. His entire digestive system is affected, to varying levels. I can’t change this and I can’t magic it away. It is something that exists and it is no fault of anyones.

I am sick of feeling judged when I say that my son has feeding issues. When meals are a daily struggle because I don’t care WHAT he eats, I just need him to swallow something (anything, for the love of fucking god). Like his feeding issues are something I can control.

It’s not that easy, but I wish it were.

I will continue to cheer every single time my son swallows something that isn’t liquid. I will count dinner tonight a success because egg noodles dissolve well enough with minimal chewing to slide down his throat easily.

And if this means that he lives for another year on apple and pear puree, then THAT is what I will do, and fuck everyone who says that I’m “ruining” him.

Because at this stage, I don’t care about ruining his long term palate.

I just want my kid to learn to swallow.

I got some amazing news today. Throw your hat in the air and shout kind of news, run around the house squealing, tell everyone in sight kind of news.

(No, I am not pregnant.)

It was amazing news. I poked Nathan until he woke up – lazy bones was napping on the couch – and told him. I rang my parents, and spoke to my father and told him the great news. Mum wasn’t home.

I was so over the moon that I caught myself for a split second starting to dial the number for my grandmother.

And then I burst into tears because she is dead and I can’t ring and tell her. Suddenly I wasn’t so excited, I was just bone crushingly sad.

Death is hard. Death hits you at the strangest of times, when things are going well. You’ll be travelling along, and things will be just fucking perfect and then your brain will collapse in on itself and you’ll be left sobbing. Death is so final and I think that is the hardest part to live with.

I cried for an hour and then I rang my mother and we celebrated and cried together, because that is what you do.

Knowing that Nan would be excited and proud isn’t the same as ringing and speaking to her. Knowing that she would be cheering me on from the sidelines is nothing like sitting down and telling her about it. It’s just not the same.

Things are going well for me. They’re going really really well. I got another couple of businesses to sign on to Showcase Tasmania, I’ve got a few more interested and in the process of confirming and deciding and (the biggest thing I suspect) it’s finally Not Winter anymore.

I am happy. I am truly truly happy. And in the same breath, I am so terribly sad, because I am getting married in a month, my blog is doing well, things are happening for me and my grandmother is still too dead to share this with.

And that is the problem right now.

***

Ghosts and the possibility thereof aside, death is death. It’s final and I can’t change that.

I should hopefully be able to share my news with you in the next week or so. I am really excited about this, but you know, pass the tissues. I’ll cry and dance at the same time.

I keep starting posts and then deleting them, because I keep failing to say what I want to say in the way that I want to say it. Right now, Yo Gabba Gabba is trying to suck my brain out through my ears and I suspect that it is succeeding. If anyone says that TV is not addictive, they’ve obviously not seen a child given thirty minutes of Yo Gabba Gabba and set loose on the world.

I went to see a Psychologist last week, for the first time. I had all of the usual panic attacks about talking to someone and then promptly burst into tears when I tried to give her the run down of why my brain is all fucked up and dripping out of my ears. I cried, a lot. But only the annoying kind of crying, that makes your eyes leak and your nose run, without making you feel better about things afterwards. Shame, I could have done with some feeling better.

It wasn’t a bad appointment, completely the opposite in fact. I didn’t get the feeling that I was going to be dumped at the first chance (something that 99% of medical professionals have had in common so far) and I talked and walked out wondering if this might actually help. I suspect it will.

**

Amy has been scatty lately. Scatty being the best word to describe it. Scatty, distracted, vaguely reminiscent of a bouncy ball thrown into a cube and shaken vigorously. I feel like I’m speaking to a brick wall every time I talk to her, the words are just echoing right back at me and nothing is being absorbed. There are only so many times that you can tell a child to stop bouncing on the freaking furniture and GO OUTSIDE before your head starts to hurt.

And it’s not just the furniture bouncing; it’s the screaming that I’m ruining her life when I refuse 24/7 TV, and the refusal to listen to anything I say, the disobedience, the not giving a fuck about anyone else, the hitting, the pushing, everything.

***

Some children are just MORE.

They’re louder, grumpier, closer to the surface. They’re more unregulated, more sensory seeking, more likely to fight you every step of the way. They’re more defiant, more likely to make you look like that arsehole parent whisper yelling in the supermarket so help me god you stop touching that right NOW.

They’re the ones whose parents have grey hair and haggard expressions, finding themselves clinging to the thought of bedtime like a saviour, even when bedtime is no barrier to escapades.

They’re the kind of children who make the best kind of adults; stubborn and idealistic, refusing to give in to the system and being defiantly brilliant in the face of all odds.

We just have to hang on with our fingernails and concentrate on getting them to adulthood, where all of these traits are considered positive.

My fingernails are not long enough for this. I might do better holding on by the skin of my teeth.

(but teeth don’t have skin. shut the fuck up.)

****

I know that this will be okay. I’m sure in years to come I will read back over these blog posts and either laugh at myself, or send myself into a state of panic and PTSD.
I guess I won’t know until I come through to the other side; that side where everything is okay and eccentricity doesn’t leave me tearing my hair out.

Until then though, my head hurts.