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Posts Tagged ‘children’

 

I’m struggling, badly.

I hate writing these posts, but I hate not writing them more. I’m doing nothing with my life, I feel genuinely incapable of letting go of objects, people, and situations that I know are weighing me down. I’m fairly sure I’ve become symptomatic, some days.

I still have good days, a few in a row, and it’s them that keep me going and striving towards some kind of life. Ironically, my cancer count has continued to fall after stopping mainstream medication and there’s something that makes me think I won’t have cancer forever, that I will reach full remission. I can’t describe what that ‘something’ is but it just feels like something I know, like the sun will set tonight, a deep faith. I’m not religious, but if I was, I would think that God is looking after me in this way, and that everything is going to be ok.

Being in the middle still sucks though. Some days I even consider sending Bailey to school, just to give myself a break, but when my brain fog clears I know we’d both be worse off. I’ve grown more and more disenchanted with our education system, and more distrustful of government systems in general – I think having so much go wrong medically, learning about treatments available elsewhere that are illegal here, seeing a close friend being treated incredibly poorly by the Education Department, having my privacy severely compromised more than once has all taken its toll. Being screwed financially over and over doesn’t help either.

It’s alienating, feeling at odds with society in general, but also strangely freeing. Not my circus, not my monkeys – and all that.

I try not to write about Craig much anymore, but let’s just say he’s a letdown as a father and a human being. On the same day he told me that Bailey hasn’t been doing swimming lessons because of ‘too many bills’, he bragged about his new motorbike. It was Bailey’s birthday a couple of weekends ago and he was so slack. I have protected Bailey’s feelings more and more but unfortunately I can’t keep lying for and making excuses for him.

It’s a horrible lesson to learn that your parents aren’t who you want them to be, but unfortunately I think Bailey will have to start seeing Craig for how he is now, and that’s going to hurt both of us.

We’ll be ok though, we always are.

Ash x

 

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(again)

 

Up the hill.

Sometimes it seems like it’s either fucking cold or really fucking hot, but we have been having some in-between weather lately and I’m grateful for that. And rain. On my tin roof. Small things matter.

I live in a town that seems further than the hour, or roughly 70kms, that it stands from Perth. Our house is ‘in town’, on a few acres. It’s usually pretty quiet. We’re walking distance to the Primary School, playground, bakery, post office, real estate etc.

I like so many things about living here. Actual seasons, spring especially is amazing. Seeing hayrolls and tractors and lambs. It’s a horse-orientated area and that can be good and not so good. I have some awesome, amazing, wonderful friends. It’s low crime, people look out for each other, kids play outside and get dirty.

We have horses, dogs, chickens, a cat and a rabbit.

If someone wants to make your life hell though, it’s pretty easy to do. If you are ‘different’, people notice. Not much stays private. If you are ‘interesting’ or ‘unusual’, people will discuss your life like it’s a TV show, and then pretend they don’t know you at the next get-together.

The good outweighs the bad, usually. It turns out people are actually pretty protective of Bailey and I here, and rather than being given the cold shoulder when we came back like I half expected, most people were just glad to see that we’re ok.

Sure, people think I’m left-centre, but in a likable way I guess.

I don’t have many recent photos, and my house resembles a construction zone right now anyway, but here’s a few old ones, mostly of Bailey here.

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Ash x

 

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Sometimes, when I’m overwhelmed, I get in the shower, turn the water as hot as I can stand and sit at the bottom with my hands over my ears.  It feels like I’m in another world, totally removed.

Lately it’s been a daily occurrence, sitting, counting to ten, letting tears escape, rinse and repeat.

I’m starting to get used to the idea that I might not reach this ‘acceptance point’ and feel stable from then on, that it’s going to be up and down, good and not so good days mixed in with cancer counts and banana pancakes, reading eggs and nosebleeds, horses and long drives and friendship and bullshit.

This hurts, you know? It sounds so juvenile but at a base level, cancer has hurt my feelings. It’s not fair. I’m not the type of person who gets sick young. I sleep with men I shouldn’t, get addicted to television series, love avocado and can catch the trickiest horses.  Bailey’s not the type of kid who has a sick single Mum. He’s homeschooled, wants to be a ninja, loses his brain on sugar and likes Adventure Time. I have no idea what these ‘types’ are, I just know we’re not it.

It’s ok. I’m as ok as I can be. There’s no point being otherwise. Last year when I realised I’d been misdiagnosed, mistreated, could have been cured I fell into a hole over it. When I had to write an ‘impact statement’ I felt like I would explode before I got it down on paper. How do you add up hours driving to specialists, whole weekends away from my infant son after radiation, relationship breakdowns, seeing my father cry, the loss of a lifestyle I worked hard for? How could I even halfway articulate how it affects me to know that Bailey didn’t have to know anything about this? That if I’d been diagnosed correctly I could have been in full remission before his first birthday?

These things happen, and no-one is to blame, and that’s the truth. I’ll admit to feeling some closure after seeing my first Doctor, who has no bedside manner, didn’t listen to my concerns, and downplayed independent testing I had done, avoid eye contact until I actually said ‘Fuck You’.

He apologised and it sounded sincere. And I know he would have been asked not to.

*****

So now, I just get to be brave. I’m choosing less treatment in favour of a life where I can play ponies and have my son at home directing his own learning, where we can grow things and take day trips. Where there’s room for coffee, hugs, sex, novels, stargazing. Where I have to be brave enough to deal with the possibility that this won’t pay off, that I may look back and wish I’d done more mainstream treatment. Sometimes, when you have a gut feeling, you have to be brave enough to go with it.

Ash x

 

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Last year when I moved, I was so rushed that I was still throwing shit into boxes, onto a tarp, and into the back of my horse float, while my tenants were moving their stuff in.  Kitchen utensils mixed well with clothes, bathroom things, and stationary.

Most of that stuff is still downstairs, still in boxes.

Obviously I had planned to have a big clean out and sort it all and move back into my house (or another house) with shit totally together, physical, emotional, spiritual and financial, but clearly it hasn’t worked out that way. Part of me wants to ditch everything and start again, the other part knows that’s stupid and wasteful and I’m sure there’s some things I’ll need when I get back to reality.

I need to do so many things, instead I just sit and look at the beach.

Not to mention fucking Christmas.

Craig has started being mildly painful again, I think he senses me moving on, becoming self-sufficient and making big decisions for myself and Bailey without his input and is like ‘oh fuck’. I know I shouldn’t engage with him. But a big part of me still wants that eventual happy ending. Especially for Bailey.

It is what it is and all that.

I have to go back for now, but that doesn’t have to be permanent. The plan is, stick it out for 12 months, then see what I can work out. I want to be near the ocean, and have some space. I want to work for myself (so I’m starting a new business) and I want to do everything I can for my health. And I still want horses. Stupidly. The worthwhile things are always hard.

I guess I just wanted to give you guys a little update, but this is good for ordering things in my head too.

In health news, I’m doing ok. I’ve suddenly started having migraines, which scared the absolute crap out of me, but I went for all the relevant scans and there’s nothing new. In the last few months my body has become increasingly reactive to food, which I’ve really been struggling with so I’m thinking that this is just another reaction. Right now I seem to have reactions to wheat, dairy, meat, soy, tablets (!), liquid supplements, summer/ tropical fruits, corn, and I’m sure there’s more. I can eat bananas and feel ok. And fish. Some types.

So I’ve given in and started on meal replacements. I don’t agree with it and I never wanted Bailey to see me doing stupid diets, but I can’t keep vomiting, having cramps, carrying excess weight while being low in absolutely everything that’s testable. So far, it’s a lot better. It’s expensive, tastes awful, but worth it.

The water is so blue today. I’m going to miss this so much. Is it stupid to grieve for places that will still be here? Maybe. This house is going, and it feels like the last link to the small amount of happy childhood I had before life started to implode.

When I close my eyes here, I’m four again, at the beach. I don’t know what cancer or divorce or alcohol or sexual abuse is. My mother has come down a couple of times, and I think she is trying to forge some kind of new relationship with me separate from the truce we’ve established since I had Bailey.

She’s still hyper-critical, but I’m beginning to see that’s more about her than about me.

And I think I’m a better parent than her, arrogant I know. So does she, I can tell when she watches me with Bailey, that hint of wistfulness at what she’s missed and can never get back. It’s true what people say, they grow so quickly, and you get one shot. One.

You can’t fix a childhood, that’s something that I’ve really truly learnt this year. But you can choose to forgive, be a cycle breaker, work with the good stuff. Bailey’s childhood isn’t perfect, not by a long shot, but he’s loved and wanted, and he knows that I didn’t choose to get sick and make things difficult. And that I would never choose to leave him. The thought wouldn’t even cross his mind.

So I’m stopping beating myself over the head for things out of my control, and starting to trust that he’ll be ok with me, regardless. He might even learn some important lessons.

Ash x

 

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There’ve been times, especially this year, when I thought I might not make it through. The truth is, I haven’t always wanted to be in this world. That’s hard to acknowledge, but it is what it is. Losing myself like that scared me badly, but it was also the catalyst for crawling my way back, stumbling over every rough spot, finding that flicker of light.

It isn’t a graceful journey, but it’s beautiful.

I don’t have much left really, I’ve spent all my money – what was supposed to be a cheap break-year that I could recoup from turned out to be a massive financial drain. Appointments, specialists, independent testing, alternative therapies. I made my choices. I’m in ‘partial remission’ which was unexpected for my situation at this point, so I think I made a good judgement call. I’ll probably have to sell my car and get something cheaper, I leased out my good horse to minimise costs without ripping my heart out, Craig will have to wait to sign the house over because I can’t cover it.

I have my son, I have my sanity, I have my friends and family.

Faith, Hope and Love.

Life just seems like such a trip sometimes. I’m 28 and I haven’t done anything. I’m 28 and I’ve done so much. I’ve done everything backward to other people I know, and that’s fine. I had a baby after being told not to hold out too much hope for children. I was diagnosed with cancer six months later, two months after buying my first house. Now my son is 6, and it’s just us, as I pick myself up yet again, go back to school – chemo brain and all – and try and make a life for us.

It’s amazing how I always get another chance.

I’ll probably always regret the way some things have ended up. I’ve lost people I care about due to my own inability to relate to their normal while mine has been so left-centre. When I’m hurting and scared, and people with good intentions try and push me towards something I don’t have room for, I tend to react explosively. But I’m learning.  The most meaningful relationship I had bar the one with my son disintegrated quite spectacularly, and that still hurts intensely when I let it, but I’m also edging towards a sense of acceptance.

I know it’s taking a lot longer than what people say, but I’ve had a lot to contend with in the meantime.

Most amazing is that I actually like bits of myself now. I can be strong and brave, funny and kind, when I have to be. When I’m having a good patch and handling life, I’m nice to be around and people like me. I have the best group of friends who try to understand me, make me nutritious meals, tell me to get more sleep and who have drenched my son in love as he’s struggled with increased awareness that this family isn’t like his friends’, because his mother is sick on a regular basis and there isn’t a permanent person to pick up the slack.

He went through this horrible acting out phase – above and beyond the usual six year old boy thing, and I was so shattered I couldn’t even write about it, but now he is even more beautiful than he was before.

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Life is nothing like I thought it would be, and I’m so blessed.

Ashx

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That you’ll never be the same again.

Sure. If I keep on top of myself and I’m careful and I have a hell of a lot of luck I *might* be able to put our lives back together. For awhile. Some bits. The important ones I’m hoping.

What’s important has changed. And that’s not all together a bad thing.

I’ve lost most of my friends, which I only realised today when I really sat down and thought about it. Some of the few that remain are surprises, as are some of the ones who left.

I haven’t written much about it, but there are cracks in my relationship with Bailey now. At the start of the year I would have said we were bulletproof.

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He’s over me being sick, and everything that comes with it, and I don’t blame him one little bit. I’m tired, on edge. Everytime I start to get on top of things, something happens. I love him more than life, but fuck this is hard to deal with. I’m failing him, doing heaps of things I thought I’d never do, just to cope.

He asks why it was his mummy who had to get sick, and I have no way to answer that.

He lucked out with me, really.

*****

I’m having a flat day, obviously, but overall I’m still doing ok :). I’m not getting a heap of sleep, because I was honest enough with my Doctors to admit that I shouldn’t really be trusted with pills at this point, and it was one of the harder things I’ve had to verbalise lately. Of course, I want them badly and I’m kicking myself a little now, but I know myself, and unfortunately I think I’m always going to struggle a bit with things that can numb me or take me away.

Alcohol, sugar, pills, cigarettes, sex, it’s all part of the same problem for me, and I’m committed to sorting that shit out. I’m not an alcoholic, a sex-addict, I’m a chronic cope-r, and I just do anything in order to keep going and then to switch my brain and feelings off at the end of the day.

I think I’ll get to the point where I don’t need to, because I’m starting to notice the things I fucking love about my life, and building on them.

*****

So Craig called me other day. He didn’t have Bailey the previous weekend so other than me texting him to say Bailey was sick, we hadn’t had any contact, and for a couple of weeks before that, it was very quick drop offs, no dinner, no chat. Basically because Fuck him.

It was awkward. Up until now, unless it’s been in the direct aftermath of a massive fight we’ve still been able to talk pretty easily. I mean, I could talk to practically anyone though.

‘Hey, I was just wondering how you were? What’s happening?’

‘Um, nothing much, you? Did you want to speak to Bman?’

‘No…I just wanted to know how you are? How’s treatment?’

‘Yep. It’s fine thanks. How’s work?’

‘Yeah…ok…’

-awkward silence-

‘I miss you’

-disbelieving laughter, massive smile-

‘I don’t really care’

You know those moments that make life worth living? Pretty sure that was one of them.

xx

 

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*long-winded, please please bear with me*

Remember how I mentioned my iPhone was in the shop? Like a month ago?

Ok – backstory. This is the iPhone 5 that I have had for about 6 months, after dropping my 4 in the dogs water. I have this annoying habit of popping everything in my bra then when I lean over to do stuff…argh.

Anyway.

My dad was down for a couple of nights, so I left Bailey with him and wandered off to check what on earth has happened to my phone, go to the Laundromat, blah blah. I walked into my mobile phone providers shop – quite a large national company, and started fiddling with the display phones while I waited for someone to get to me. Got to the iPhones and pressed the button on the 4…hey that lock screen looks familiar. Unlocked it and it was my old Facebook home page.

Fuck. Me.

In total disbelief I flicked through the phone, yep all my apps. Into the messages, every text from all of 2012. On my Facebook, even though there’s no sim in display phones, you can still see a good amount of my messages, it just won’t load more. But it will load all previous texts, my whole call log, 50 emails. Went into photos, pictures of Bailey and other people’s kids. WordPress app – every post from here to here in entirety.

A health app with all my medical details, weight, height, treatments I’ve had – everything. A period tracker.

Oh. My. God.

Once the nice girl in the shop believed it was actually my phone I made her cut it down and kept it with me. She called her manager really upset…asked me to come back in and meet him a couple of hours later. Which was a total waste of time, he just wanted to apologise…

Not that anything can fix it but holy shit.

I rang consumer protection and spoke to two people that were just totally shocked and angry on my behalf.

It takes a lot to get me angry but I am so seeing red over this!

Any thoughts??

x

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I know I’ve said this lots of times, but my son is amazing.

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Bailey and the dumbest dog ever. And my foot. Ew.

I love him, I love him, I love him.

I had to take him with me to get blood tests and a scan today. I usually wouldn’t but it was unavoidable and I felt awful about it. People stared a little, sympathy in their eyes as I towed him down a long corridor. My favourite nurse pursed her lips and asked if I wanted to see if the crèche was open.

‘No, he’ll be fine. He’s well-behaved and knows how to sit quietly.’

‘I know he’s lovely, it’s just that if you need to tend to him, we have to start again.’

My son is me. I know him. I can actually feel his feelings, know instinctively how he is going to react in most situations. I felt his pride, ‘I’m almost six, so I know how to be good’, and his offense at being doubted.

‘Honey, you can sit just there quietly and not interrupt, can’t you?’

Eager nodding.

More guilt seeping, the better he is, the worse I feel some days.

After, waiting in the pharmacy, she takes the seat on the other side of him.

‘You’re a well-behaved little mite, I can say that much. I think you deserve a sticker.’

Wide eyes, excited smile ‘Really?’

From behind her back she brings out a whole sticker book, a packet of smarties, a little metal car.

‘This is for being such a good boy for Mummy today. Do you think you can go over there and play while I have a word?’

He looks at me quizzically, I nod so he says ‘Thankyou!’ and scampers off, only to dart back and throw his arms around her, exclaiming ‘I’m so lucky’. She laughs and hugs him back, but I see her eyes fill with tears as he turns away.

Look love’, she begins, ‘I know we probably seem like a group of unfeeling fuddy-duddys sometimes, but in this job, if you don’t have some level of detachment, you’d be crying yourself to sleep.’

‘You don’t seem unfeeling… I couldn’t do what you guys do.’

‘I just’, she fumbles a little, ‘us, me and the other girls, we think you’re fantastic. You’re doing really well. We see all types in here, you know. But we all like to chat to you, even though we wish you didn’t have to come in’

‘Thanks…that means so much’ I probably sound kind of cold, but I can’t have another crying session at the hospital. And I never know what to say when people compliment me.

‘And you’re a good mum. Look at that little treasure. He adores you’

‘He’s wonderful. I don’t think dragging him to the hospital when he should be doing his schoolwork really constitutes good parenting.’ I’m smiling though, so she does too.

‘Because of this unfair mess, he’ll have empathy and resilience in bucket-loads. Don’t forget that, love.’ She pats my shoulder as she walks out.

*****

I always try really hard not to spoil him out of guilt. I want him to know what it’s like to really, really want things, to have to work for them, know how much more stuff means when you’ve earnt it.

‘We need to stop at the shop baby, can you think of anything we need?’

‘Toys’, he jokes, grinning at me in the mirror.

I laugh, ‘How about some bananas and milk, um bread…something for dinner?’

‘Where are we going?’ he asks suddenly, a few minutes later, noticing we’ve veered off our usual route.

‘Just a different shop’

‘This looks like the toy shop!’, as we pull into the parking lot.

We hop out of the car, him asking if we need to buy a present, why are we here, can we look for a little while. I pick him up, struggling under his weight. Balancing him on my hip, I stroke his cheek and say, ‘Pick any toy you want’.

He’s confused ‘What for?’

‘Just because I love you and I want to buy you something.’

We’re there for about an hour, and I don’t rush him. I let him look at bikes, cricket sets, remote control aeroplanes. Eventually he picks up a little container of slime, $4.99.

‘Can I have this?’

‘Really? Are you sure you don’t want something different?’

‘I’ll keep looking’

Eventually I steer him to the Lego aisle (islands, he calls them), and catch him gazing up at the big Lego city boxes, even while he’s holding a much more reasonable fire truck set.

‘Do you want the big box?’

The look on his face is like all his Christmas‘, birthdays and special treats have come together.

‘But it’s huge-mongous. I bet it’s really expensive.’

‘If that’s what you want the most, lets buy it.’

He grins as I hand him the box. It’s a lot wider than he is, but he manages to get it up to the counter, and is almost vibrating as I pay and chat to the checkout chick.

‘I can’t believe I just got that! THANKS MUMMY!!’

It doesn’t make up for anything. But holy crap, it was good to suspend reality and day to day shit for a little while. To not ‘be sensible’.

Today, he just felt heaven sent.

*****

I’m so annoyed my iphone is in the shop, because I’d love to show you guys a picture of him holding the box.

I’m so grateful for him, for kind nurses, teddy bears, sunsets, my friends, soft sheets, love in every form. I’m grateful I express myself writing, otherwise I don’t know what I’d do.

Much love

x

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One, Two, and Three.
After what at the time felt like a semi-spiritual-epiphany or something, I had a bit of a crash. The next day we went to a tattoo place, my bestie needs to get one of hers fixed up and I’ve wanted ‘Bailey’ on my wrist for ages, with some kind of design around it, so I figured I could just get the writing and save the design for ‘when I go into remission’.

I wasn’t nervous and felt kind of out of it…I picked a script that I liked but wasn’t perfect… Took some amusement in the artists and other customers trying way too hard to be badass and original…I just felt so removed from it all. The guy was aware it was my first time, kept asking if I was nervous and stopping and checking that I was ok.

I guess it hurt a little, over the vein…I don’t know. Honestly, I wished it’d hurt more, burnt like acid.

We walked through the city in the sprinkling rain, and I didn’t want to go home.

*****

Since then it’s pretty much been a blur of tests and drs and friends saying how sorry they are, and is there anything they can do.

There’s nothing, really.

I see my counsellor, my safe place for the last couple of years, and she says she won’t be able to see me any more, her hours are being cut, and it’s the worst timing ever.

I might not go into remission. That doesn’t mean in any way that this is terminal. It means it might be an ongoing thing, that I’ll have to live around. Treatable is different to curable. I may have to rewrite what ok means to me.

Just. Fuck.

It’s grey today. Thankfully. I don’t think I could do blue skies and sunshine. I can’t tell where the water meets the sky, everything’s murky and blended and undefined. Like me. We’ve got no milk, I need to clean up. I just told Bailey we’re starting school holidays early, and we can have a movie day.

I haven’t talked to him about anything yet, or most of my family, and I really truly feel like I just can’t. It feels impossible. Totally.

x

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Grief

Kids always amaze me with how well, how…effectively…they grieve, and my son is no exception. Saturday was ‘Australia Day’ and we lost a family member.
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He had been missing a few days, and I knew that he would never not come home if he could, but I couldn’t help hoping…we’d been out calling, asking people, taking the dogs to look for him…

I woke up early and had this feeling I should have another quick walk around while Bailey was watching tv. I found poor Simba laying on his side a few meters from the house, and he looked like he’d been hit by a car a few days before, hid somewhere and then dragged himself home to die :'(.

We have a lot of animals and love them all, and growing up we always had 3 or 4 cats on rotation…but Simby was extra special. He was bossy and opinionated and an amazing mouser. He was very much my cat, except for a when I brought puppies home and he chose Bailey as his sidekick for a few weeks, making sure I knew he was not pleased and I would be shunned.

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I tried to keep him as an indoor cat but he wasn’t having it…gradually I stopped worrying about him, he always seemed to be in calling range, climbing trees and playing with the dogs.

Of course I wish I’d kept him in now 😦

When I told Bailey he cried a little, then asked to see him. I had covered him with a blanket so I just pulled it back enough so he could see it was Simba underneath. When we came back in he cried for a couple of hours, all curled up with our other cat Zazu… We buried him and he covered his body with flowers and said ‘I will miss you so so much Simby, and I loved you even when you were so naughty’

He was naughty too, a real shit of a cat. His favourite game was to wait on top of a door for Bailey to walk underneath, to then jump on him so heavily he would fall over.

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‘Simba you are not my friend! You’re not allowed in my room forever!’

Of course Bailey’s been a bit quiet, but now a couple of days later he says he still misses him but feels ok, because Simba had a good life and ‘we can still love him, we just can’t pat him and give him food now’.

He’s absolutely right.

x

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