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Category Archives: Headfuck

  1. Barely maintaining the chaos

    Some days it feels like I’m barely maintaining the chaos.

    When I’m trying to write, Isaac is playing with his toys, Amy is causing destruction and Maisy is pitching in, like any good puppy, to cause as much mess as possible.

    Amy’s a tricky one, because she waits until I’m not watching, before disappearing into the kitchen to make a rice cake and cheese/pour some milk/get out the eggs/look in the fridge/make a godawful mess.

    And I’m watching her, I truly am, except for in the 5 seconds when she causes absolute havoc.

    So I break off what I’m doing, clean up, kick her out of the kitchen, put the dog outside, make everyone something to eat, before sitting back down again.

    Then it all happens again.

    We’re put combination locks on all the cupboards and the fridge, which helps. So long as we (meaning Nathan) remember to CLOSE them. I mean, surely it wasn’t Amy’s fault she ate an entire block of chocolate yesterday, silently, so she didn’t wake me. Although, that one, not helped by the combo lock so much, she used a chair to get to the very top (unlocked) cupboard. Sigh.

    Mornings are my time to write. By the time bedtime knocks around, I am too tired, and too sore to sit down and type, so I don’t bother.

    Unfortunately, Nathan is taking advantage of these last few months before Amy starts school to sleep in as much as possible, leaving me ‘working’ and dealing with children and tidying up and it’s just exhausting.

    And yes, I could break off my writing and pay full and absolute attention to my children. Surely they wouldn’t get into mischief then?

    Well no. Actually, you’d be wrong.

    Even if I’m paying FULL attention to the children, which generally involves having them both hanging off my body, leaving aside the fact that not writing when I need to sends me a little bit batty, Amy still gets into mischief. She just waits until I’m changing Isaac’s bum, putting a load of washing on, turned around or in the toilet. Which you could argue wasn’t me paying FULL attention to her, but shit, I’ve got to do something other that let them sit on me and pull my hair.

    She’s such an overwhelming child sometimes, I can’t even begin to explain.

    It’s just frustrating to feel like I’m spending the day running three steps behind everyone else. To have dislocatey bits and still be making sure Amy stays in the small yard, keeping Isaac entertained, and keeping the house as least semi-livable.

    But then we have moments where the house is mostly tidy, Isaac is napping (a rare experience) and Amy is curled up on the couch next to me, snuggled into my lap while I read a book.

    And that’s when I think I’m doing something right, instead of barely holding on.

    Posted in Amy, Headfuck, Isaac.

  2. Internet Safety, the things that scare me.

    I received Amy’s enrollment forms for school recently and as I was looking them over, I noticed a new part.

    I give permission for my child’s photo and full name to be used on the school website:  YES/NO.

    Immediately alarm bells began to ring and I circled NO.

    Because, and here is my reasoning:

    I am Amy’s mother and I write about her on the Internet. I don’t use her surname, nor do I mention where we live, or what school she’ll be attending. These are safety things.

    But, even though I write about Amy – I don’t want her full name and photo used by the school on their website, EVER. It’s only a small step from someone finding out which school she is at and her full name, to being able to track her down and I don’t want that.

    Am I being paranoid? Maybe a little, but look, I earn my money on the ‘nets and I know how insane some people can be here. I don’t want anyone being able to track us down at home, or being able to find Amy at school.

    And I’m a little pissed actually, because you’d think that the school would think of that and not use full names and photos of students. That said, I applaud the fact that I can refuse permission for Amy’s photo and work to be available online and I’m glad we have that option. I’ll certainly make full use of that.

    I recently found out that you could find my home address online, thanks to a find people for free website. You can bet your arse I was on the phone to my phone provider that day, getting my number delisted. I’m pissed to find that while I’m delisted from the phone book, the website still has my details available.

    And god knows, when Amy starts school and I do the obligitory OMG my baby! in uniform! going off to school! post, you can bet money on the fact that the photos will be in black and white and that the school logo will be blurred beyond repair. I’m paranoid enough to not even want the school uniform colours known.

    So, my questions:

    Do you think I’m being oversensitive?

    How does your school handle their online presence and your child’s photos? Did you get a chance to opt out of having photos and work available online?

    Have you ever thought about this before – or do you think that, as bloggers, privacy issues and this kind of thing are naturally at the front of our minds?

    Posted in Amy, Blogging, Headfuck.

  3. How am I not insane? I don’t know.

    ‘How are you not insane?’ asks the Occupational Therapise after we’ve just finished discussing all of Amy’s issues, a list about the length of my arm.

    ‘I don’t know? I guess, I’ve got no choice?’

    And the reality is, I don’t know. Nathan and I get to the end of some days and look at each other, wondering where we’re going wrong.

    Only the thing is, we’re not doing anything wrong.

    After discussing Amy today for over an hour and a half, the OT looked at me: ‘So, what do you think is up?’

    ‘To be honest? I think it might be Aspergers. I think there is something more here.’

    Of course, the OT can’t make a diagnosis – we need a Paediatrician and a Psychologist to do that. But she works with autistic children every day and knows what they’re like.

    ‘Look, I know you can’t diagnose anything, but is it aspergers do you think?’

    She looked at me.

    ‘Well, what we’re seeing is in line with an aspergers diagnosis. It’s all very typical behaviours.’

    So that’s that.

    ***

    Amy has some amazing strengths:

    She is intelligent, oh so intelligent. She speaks well above her age level and she can problem solve with the best of them.

    But, her auditory and visual sensory processing issues are pretty major and we’re not sure just how much of what we’re saying is reaching her. She prefers the dark, she can’t concentrate with background noise around and she melts down often.

    She needs to reaffirm everyone’s relationship to her, every single day. ‘You are my Mum. Your name is Veronica. Daddy is my Daddy. His name is Nathan.’ She can’t answer some questions and she walks off in the middle of conversations, because they’re too much for her. She doesn’t understand strangers; everyone is her friend.

    She has a lot of social problems and while eye contact wasn’t an issue when she was a baby, it’s getting too much for her now. And the OT suspects that Amy isn’t processing pain signals properly.

    On top of so many other things that are aspergers related.

    On top of the Ehlers Danlos.

    On top of the Coeliacs.

    She is beautiful and heartbreakingly difficult.

    ***

    I knew it was coming. I knew.

    It doesn’t make it any easier and while I know it changes nothing, except the services we can access, I’m a bit shell shocked today.

    The OT (who is lovely btw) is astounded that no one has picked this up sooner. Amy has never been an easy child, she screamed for her first 12 months and things never got any easier. Not really.

    And it’s getting harder as she gets older.

    Everyone missed this – even when we told the Paeds that Amy was incredibly difficult, that she doesn’t listen, that she does what she likes regardless of what we say or do. They all missed it, even when the desperation must have been audible in our voices.

    ***

    We have a lot of work and a lot of appointments and therapy ahead of us. Amy starts kindergarten in February and it is flying closer, faster than I’d like.

    And all I can think is that I miss my grandmother an awful lot today, with an ache that hurts.

    Posted in Amy, Aspergers, Grief, Headfuck.

  4. Amy’s bedroom. Aka the mess pit.

    Keeping Amy’s bedroom tidy is a nightmare. I could deal with it, if it was just standard 3yo mess, but the lack of shelves/cupboards/organisation is driving me a little bit batshit.

    A bit of backstory. In 2008, we bought this house, quite cheap. We were lucky, because then the GFC hit and there would have been NO hope of us getting a homeloan, being low income earners. So, we’re ahead of the game at least.

    The house however, is a renovators delight. Or nightmare, I’m not quite sure.

    See posts here, here and here.

    Go on, read them. I’ll wait.

    So, the house, it needs a leeetle bit of work, which is why Amy’s room has no storage.

    We did however, put up glow stars and planets for her.

    Before we moved in, the panels hiding those gaps had been peeled off, obviously so the previous residents could paint. Of course, they didn’t finish the job, leaving us with a giant mess, that we’ve not had the money to fix yet.

    Soon, hopefully soon, the room will be plastered, painted and end up with bookshelves, shelves and a cupboard for her clothes.

    And you know, by the time that happens, she might even be old enough to keep her stuff in order without our help!

    We’re not even going to talk about how part of the floor is sinking and that it’s a little like walking on a boat.

    At least, not today.

    Posted in Amy, Gotta Laugh, Headfuck.

  5. Things Like This Don’t Happen To Someone Like Me

    This post comes from my friend, Kristin, who is going through a really tough time at the moment and can’t post it on her own blog.

    ***

    It’s hard to tell where it started. Perhaps it was the night I stood in the kitchen. The kids were in bed, he was down in the basement doing god knows what, lifting weights probably. I was alone. I was angry. My body was trembling. And that is when the thought entered my mind. That I could take a glass, one of his glasses, a Guinness glass, and throw it against the wall and it would feel very good. I had bought him a set at Target last year. They were large, over-sized drinking glasses. I stood for a moment and tasted this thought. I had never thrown anything against a wall, never broken anything before. I didn’t think highly of people who did these sorts of things. But wouldn’t it feel good?

    It wasn’t just that he had been reading my private emails. It wasn’t just the elaborate lie he had made up to cover up the fact that he had been reading them. Nor was it the lie upon lie upon lie before that. No. It was the eight years of stifling every sharp-edged truth that rose up in my heart lest it disrupt the precarious balance of his emotions and tilt him into a slide. A slide into what? I didn’t want to find out what. I lived in fear of that what.

    In the end I picked up the glass and walked to the stairwell and in one easy motion chucked it against the wall where it smashed into a thousand, glorious splinters.

    A glass thrown against a wall in an empty room. Immature, perhaps. Fateful, it would turn out. But so clean and honest. I turned and walked quietly to my room. Did I know then that I had aroused the slumbering beast?

    It’s funny how when tragedy falls we act so surprised, as if we never saw it coming. This was my very reaction three days later when I sat in my bathrobe filling out the witness statement as the police took photographs. I couldn’t believe any of it was actually happening. But looking back all the signs had been there. I had lived in fear of this moment for months. Years, really. I had gone so far as to pack bags and prepare a safe place for myself and the kids to stay after each legal meeting, just in case, knowing that he would be agitated by the discussions over child support and alimony. I woke often during the night, nervous and on edge. I felt trapped and afraid living in the same house as him during our divorce, waiting for my settlement so I could get out.

    No one had ever laid a hand on me in anger before, ever. Not my father, not a boyfriend. No one. I had only seen my parents argue once in their 16-year marriage.

    When I sat in the Victim’s Assistance office of the county courthouse, just before my husband was released from jail, I told my story calmly and with careful attention to detail. In truth, I was both exhausted and terrified. I never thought I would be sitting here. I was intelligent, well-educated. Wasn’t this something that happened to other people with different lives?

    I told her about the phone call I received from jail. He wanted to make sure no one at his work found out lest he lose his job, was quick to point out that we both relied on his paycheck. He blamed me. Asked how I could do this to him. I didn’t do it, I said. Well, it was your fault for making me angry, he said. The victim’s advocate shook her head. Typical abuser response, she said, no accountability. She was the third person to tell me this.

    I am still digesting these words. Abuser. Victim. I don’t like the way they sit in my gut.

    I relayed my concern for my children, who seemed by turns angry and stunned. My daughter, 7, sitting alone at the kitchen table, staring off into the middle distance. My son, 5, full of turbulent emotion. By the close of the weekend they were yelling, hitting, kicking, crying. My daughter in the bathroom, my son on the outside, “I’m going to break down this door!” I tried to pull them apart, hold them, comfort them, isolate them from each other, scold them, talk to them, nothing worked, nothing. They were like two broken satellites hurtling through untempered black space. Lost.

    * * * * *

    I try to imagine what it was like for them, how this must have rocked the simple order of their world. What was it like through their eyes?

    That morning they are watching a movie. I come downstairs and sit on the couch with them and I can tell right away he is angry. He immediately begins to pick a fight. He demands I apologize for the glass throwing incident three days before. I tell him I don’t want to argue. He persists, is clearly worked up. Please, not in front of the kids, I say. He walks to the kitchen and picks up a large ceramic artisan bowl my father bought for me before he died. It is my favorite bowl. Do you want me to throw this against the wall? He lifts it up and holds it precariously, tilting it from side to side. No, I answer. Apologize, he demands Please, I say again, not in front of the kids. The children are silent, their movie forgotten. They look back and forth between us. My heart beats fast. I avoid his eyes. They are like steel. He badgers, needles, provokes. I ignore. He disappears upstairs.

    I wait. I wait until I think he is in the shower and then I go upstairs to get some clothes for my son, who is still in his pajamas. But of course he is waiting for me.

    What did they hear next? Probably nothing for a while, as I try to defuse the situation, talk him down as I retreat backwards into my room. And then? His yelling? Did he even yell? I don’t remember. The door to my room banging open, the pursuit, the crashing of fists through the bathroom door, my screams. His animal-like wail. By this time I can hear them crying downstairs. Then they see him run down the stairs and flee the house–the police had been called–crying, his fist bloodied. The 911 operator is telling me to repeat myself, slow down, breathe. This is when I hear them sobbing outside the splintered bathroom door. My son is clutching his blanket. I let them in, lock it again and hold them close until the police arrive.

    * * * * *

    Here are the facts:

    • On Saturday August 14th, my husband was arrested and jailed for domestic violence.

    • He was released on $1,500 bail the following Monday and given a 72-hour no contact order that applied to myself, the kids and our residence.

    • I was urged by the Victim’s Assistance unit at the courthouse to file a restraining order to extend this.

    • I was urged by my lawyer not to file a restraining order as this would interfere with our Collaborative Divorce case, which was fully negotiated and settled, but not yet drafted and signed by us.

    • Instead, my lawyer filed a temporary order extending the no-contact order until our divorce is finalized. It allows me to remain in our current house until then and gives him limited contact with the kids. I am responsible for paying the mortgage and all household and child-related expenses and he has been ordered to start support payments. The support payments will not cover the expenses of the house.

    • Two days after my husband was released I was out front doing yard work with my son when he said, “Is that Daddy?” I turned around to see a car identical to my husband’s driving by the house. We live on a dead-end street. It had driven by once, turned around at the cul-de-sac, and was driving by a second time.

    • I was told by the Victim’s Assistance unit at the courthouse to immediately file a police report seeing as my husband had violated the no contact order.

    • I was told by my lawyer not to file a police report as the police would again arrest my husband and then he might not sign the divorce agreement.

    • I didn’t file a police report.

    • Since the incident on the 14th I have had no direct communication with my husband other than the phone call from jail. I have been told through my lawyer that he wants financial restitution from me for the expenses incurred by him for having to hire a criminal attorney and pay for anger management classes, all of which he deems to be my fault. He is now refusing to sign the divorce agreement and instead asking for a reduction in alimony payments to compensate for this.

    • I have incurred several thousand dollars in legal expenses getting a temporary order filed in lieu of a restraining order and otherwise dealing with the fallout of this incident.

    • He has never apologized to me or expressed concern about the trauma experienced by the children on that morning.

    * * * * *

    I’m not sure I can properly convey the way violence can shift a world. I have a jar of compost scraps on the kitchen counter that is full. I need to empty it. The compost bin is at the far end of the backyard where the lawn meets a thick stand of trees. I won’t go empty it.

    I’ve had a locksmith out to change the front and back locks and I’ve changed the code on the garage door. And still, at night, I don’t sleep. Every sound, every creak of the house settling, sets my heart to racing. The kids are in the next room and they feel so far away. I want them closer.

    I used to think nothing of going out to the mailbox.

    I have dealt with a lot of setbacks in my life. I have lost my parents. I have been through break-ups, left old lives behind, started over time and again. I have the drill down. I know how to catch my breath, get up and dust myself off, tuck my humor back in my pocket and head off down the road.

    But this. This has quite knocked the wind out of my sails. Because this man is the father of my children and I can’t take their hands and walk off down the road without him. He will always be there. And just when I think I’ve turned a corner, he’s found a new way to break me, financially, emotionally, psychologically. And now the threat is physical.

    My own blog has sat silent now for two weeks. I have so much inside me that I want to say but I’m afraid to say it because there is the silent threat of a backlash. Will he sign the divorce documents or not? If not, I stay in a house I can’t afford and we start over again with new lawyers, another 15k down the drain. Will he respect a piece of paper telling him to stay away? Or ignore it as he did earlier this week?

    People ask me if I recognize him as the man I knew during our marriage. The truth is yes, I do. Only darker and more amplified. It’s myself I don’t recognize. I don’t know this woman who is paralyzed by fear and stunned into silence. I never dreamed mine would be the face of domestic violence.

    Posted in Guest Posts, Headfuck.

  6. Kidspot’s Top 50 – Blog your way to Dunk Island.

    I’ve not had a major holiday in a long time. Never since I’ve been with Nathan and certainly not since our children came along. In fact, the thought of a holiday, while sending me giddy with excitement, also freaks me out a little bit because wow, have you met my daughter? She’s a bit challenging. So we’ve never had a family holiday, which is a shame. I’m sure we’re missing out on something.

    The last holiday I had, I was 13. I saved up for my plane fares and I went to Adelaide with my grandmother for Easter, and she was, obviously, still alive then. We had a brilliant time working out bus routes into the city and shopping and exploring Adelaide. Oh my word, the shopping. That woman was fun to shop with. We ate sushi for the first time (we were hooked) and it was a blast.

    But you know, I was 13 and my Nan wasn’t dead, so I may have my rose coloured glasses on a little here.

    Anyway, I was named one of Kidspot’s Top 50 Mummy Bloggers, which is kind of a big deal for me. The sponsors love us apparently and want to send one of the top 50 mummy bloggers to stay in tropical paradise for a week. Which is my ideal holiday, imagine how well my joints would do if thrown into warmth? And not Tassie Pseudo Warmth, but actual real warmth? I digress.

    On the flip side, I am up there alongside some amazing women, who desperately deserve a holiday of their own. Tiff for instance, my amazing friend, who has spent more time in hospital with Ivy these last few months than anyone should ever have to.

    My last 18 months has been a bit of a nightmare. Cancer diagnoses, hospitalisations, Nan dying, anxiety attacks, more hospitalisations, geneticists, Ehlers Danlos Syndrome, a coeliacs diagnosis, Paed appointment after Paed appointment, broken arms and finally, early intervention and the beginnings of a diagnosis that is looking likely to end up as Aspergers for Amy. Yes, I finally said it out loud here, despite not wanting to jinx myself. We think Amy has Aspergers. There is a lot going on with Amy that I’ve not even been able to bring myself to blog about, because how do you tell the InterWebs that your daughter is amazingly talented, but oh my God, I think something is not entirely right here.

    I would love a holiday and you can actually vote for me over there. You can also click through and have a look at my three favourite posts and what I’ve got to say for myself.

    By the same token, I am absolutely thrilled to have ended up as a top 50 blogger. I’ve been doing this for a very long time now and it’s nice to have someone say that they enjoy reading here. Every email I get, every new commenter who says ‘I get where you’re coming from’ makes me happy.

    And sometimes, being happy with what you’ve got is enough, no matter how long ago the last holiday was.

    ***

    Have you been on holiday with your family recently? Where did you go? Where would your dream destination be if you had unlimited funds? (Unlimited funds would send me straight to England to visit my very favourite bloggers over there, before a quick trip to Kansas and then home again.)

    I’m half hoping that this summer, we can go and spend a few days on a beach up at St Helens with the kids because that would be lovely and relaxing. Failing that, a day trip to the beach would be nice. Or anywhere I can keep the kids semi contained while I lay in the sun with a book and my sunscreen. Like the backyard. Maybe here, in the depths of winter, I’m just longing for sunshine and warmth. A very real possibility.

    Posted in Amy, Blogging, Cancer, EDS, Grief, Headfuck.

  7. Bedtime: It’s a love hate relationship.

    I love bedtime. LOVE LOVE LOVE. To the point where I start counting down the minutes until 6.30pm for at least an hour beforehand. Bedtime, it’s brilliant.

    At the same time, I hate it. HATE.

    Isaac is a lovely child. I put him in his cot with a bottle, turn out the light and normally, barring a tummy ache or his sister bothering him, he is out like a light 30 minutes later.

    Amy however, Amy turns bedtime into a miserable tale of woe, with screaming, tantrums, endless requests and constant getting out of bed.

    Last night, it took nearly 3 hours from start to finish for Amy to fall asleep. Every 5 minutes:

    ‘Mummy, I need a cuddle. Just another cuddle.’

    ‘Okay, here. Now go to BED.’

    ‘Mummy, can I have a bottle?’

    ‘No. It’s bedtime. You’ve had a drink.’

    ‘Mummy, I need to use the potty.’

    ‘Okay. Quickly then.’

    Repeat, ad infinitum.

    The potty is the worst thing. She goes into the bathroom and sits quietly until we forget about her. Then she runs riot. I’m not quite sure WHY I bought bandaids the other day, as to this point, Amy has done nothing but steal and open them, sticking them to every available surface.

    Sometimes, I’ll go to check on her, sitting on the potty, claiming she needs to poo, only to discover she’s squeezed toothpaste all over the floor. Or emptied a bottle of shampoo into her hair. Or pulled out all the face washers. Or, or, or.

    And if I sit in the bathroom with her, she will screech ‘I AM TRYING TO POO! LEAVE ME ALONE!’ until I leave.

    It’s a nightmare.

    Once we get over the potty hurdle, it doesn’t end there.

    She’ll dart between her bedroom and ours, to hide under our bed until we notice she isn’t sleeping.

    Or she’ll sit in the hallway and screech ‘BUT I’M A NEED TO DRAW!!!’

    Eventually, when I’m at the end of my tether, smacks will be threatened and she will scream and wail that she ‘JUST NEEEDS….’

    ‘NO. YOU DON’T. YOU NEED TO GO TO SLEEP!’

    If I’m lucky, none of this will wake Isaac. All the stomping, yelling, screeching and tantrumming, he will sleep through it.

    If I’m unlucky, he won’t and I’ll be left with a screamy clingy tired toddler and a defiant preschooler, both screaming at us.

    Nathan and I take turns putting Amy to bed. Not that this helps. By the time she falls asleep, we’ve put her to bed at least 5 times each – leaving both of us exhausted and snappy.

    Like I said. Bedtime. It’s a love hate relationship.

    Posted in Amy, Gotta Laugh, Headfuck.

  8. Amy and Early Intervention

    See, I don’t know how to write about this, because at this stage, we still know very little. Not much at all in fact.

    We do know that Amy speaks and understands well above her age level. We know that. We know she is intelligent and highly vocal. We know she has amazing problem solving skills, as exhibited by her constant escaping from the house. I must be the rare person who constantly loses their child, even when things are apparently secure.

    We know her strong points.

    However.

    She is missing some things too.

    Like narrative skills.

    She can’t extend her play – which is why she pays attention to an activity for approximately 30 seconds before losing it. Before she wanders off, does something else, walks away in the middle of a conversation. She doesn’t extend her thinking past the now, past the ‘I’ve done this thing, now I don’t think about it again, ever’. She paints a painting for the sake of painting on paper, not to draw a picture, or tell a story, or show me something. She paints because she likes putting the brush to paper and that’s it.

    Not knowing how to extend her play and missing her narrative skills, Amy doesn’t understand how other children interact at all. She plays next to children, like a toddler, rather than with children, which is what you’d expect from an almost 4 year old.

    She doesn’t like reading, because missing narrative skills, she doesn’t understand the story. For her, it appears that while she remembers the page before (she has an amazing memory), she doesn’t connect it to the page we’re reading now and she doesn’t anticipate the next page, nor how the story will end. It’s all in the now for her, another toddler like behaviour. It why she’s only been allowing me to read her stories for the last few months – not because she wants a story, but because she doesn’t want to miss out on the snuggle and hearing me talk.

    This is why sticker charts didn’t work. She had no idea why I was giving or withholding stickers, not having narrative skills, she missed the link between action and consequence. Do something good, get a sticker! She didn’t understand why she had to behave to get the sticker, she just wanted the sticker.

    It’s also why disciplining Amy is like beating your head against a brick wall. She doesn’t get the action = consequence thing. Not properly.

    Amy also appears to have some sensory problems, mostly with her vision and hearing. She is incredibly distracted by things and doesn’t seem to be able to switch her brain off to ‘background noise’ vision. It’s why she has to examine everything inside a building, why she has to open doors, look inside, pull things apart etc, because she needs to be able to examine everything closely before she can listen or pay attention.

    It why she bolts in the supermarket and melts down often.

    She also has trouble listening when there is background noise, like the radio playing. She can’t tune things out.

    Of course, it’s all early days yet and none of these things are set in stone. But this appears to be why Amy has so many issues listening and behaving. It seems that we’ve been expecting way too much of her, because her language and comprehension are so developed.

    We’re doing more work and more studies into Amy’s behaviour with IE and the women down there are absolutely lovely. Hopefully once we’ve pinned down exactly what is happening, I will have more ideas on how to deal with it.

    For now, I’ve been asked to put all the children’s books away, bar one and read that one book every day. A lot of the toys have been put away too, so that Amy can concentrate on one activity at a time, rather than being overwhelmed by everything.

    School is going to be interesting, that’s for sure.

    And for something amusing, you should have heard me trying to explain to Amy what manners were. She asked for something, without saying please and I said ‘Where are your manners!’ I explained that manners were please and thank you and polite talking, but she still seemed to think I had something called Manners hidden somewhere and that we ought to go and find it.

    Sigh.

    I can’t help but feel that this is just the tip of the iceberg.

    Posted in Amy, Gotta Laugh, Headfuck.

  9. Throwing rocks at the windows of cars is NEVER okay.

    We were driving home this afternoon, after an Early Intervention appointment and various other things, when someone threw a rock at Isaac’s car window.

    Our car was almost on the highway when we heard the crash and felt the car shudder. Nathan spotted the rock rolling away in his rear view mirror and pulled over.

    Luckily, SO SO luckily, it missed the window by about 6 inches and hit the side of the car instead.

    You can see where it hit near the petrol cap and scratched. That window you can see in the corner of the photo, that’s where Isaac is.

    For Tasmanians, we were leaving Chigwell, on the sliplane to the Brooker Highway when it was thrown. There is a bank there, on the left of the car, with houses, back fences and lots of scrub. Speed limit 100kmph.

    The rock was thrown HARD – hard enough to shatter a window if it had hit and it was a large rock. Because whoever it was was above us, there was no way they were aiming for anything other than the windows.

    I am still shaken and so so angry.

    This rock, it could have killed my son. I hope whoever it was is proud of themselves and they’re bloody lucky that Nathan didn’t catch them.

    The person had bolted, but the rock lay in the middle of the road still, with our paint on it.

    A large rock, thrown hard at our window.

    We called the police from my BIL’s house about 5 minutes later and they came and looked everything over and filed a report for us. The officer was lovely and understood exactly why we were so upset. He was also amazed at how large the rock was, normally only pebbles are thrown. Heh, normally. Rocks shouldn’t be thrown at cars. EVER.

    Posted in Headfuck.

  10. The one where Isaac gets broken.

    One of the hardest decisions to make as a parent, is whether to call an Ambulance or not.

    So when Isaac fell off the back of the couch last night and was still screaming in pain 30 minutes later, I decided to call. He landed awkwardly and was clutching his right arm and screaming every time it moved. The swelling came up shortly later and was relatively minor. Being an EDSy child, he doesn’t swell very much.

    The ambos were lovely, they arrived and took a look at his arm, declared it broken and splinted it for us. Mum arrived at the same time as the ambos, because regardless of who went where, someone needed to stay home with Amy. The ambos were reluctant to take us down in the ambulance, because, like they explained, it wouldn’t be a comfortable trip for me, or Isaac and so, a few moments of discussion later, they gave him some panadol and left.

    We headed to the hospital shortly after, Mum and I, leaving Nathan at home with Amy to stress alone.

    There are things I’d rather be doing on a Sunday night. Things that AREN’T sitting in Emergency for hours and hours.

    Like a bikini wax. That sounds more fun. Or cleaning out everyone’s closets. Yeah. We’ll do that.

    The hospital was packed and it looked like breaks were the accident of the day. Arms, collarbones, ankles, everyone seemed to be sporting splints or slings, or icepacks.

    The nurses at the Royal are always lovely and eventually, we were seen. Isaac was, by this stage, 4 hours past his bedtime (it was 10.30pm), tired, in pain and incredibly grumpy. Admittedly, he did really well, being stuck in the hospital for so long.

    A little while later, we got x-rays.

    THAT was fun. The x-ray tech’s were lovely and kitted me up in a lead gown, so that I could cuddle him/hold his arm still for the x-rays. He did much better sitting on my lap that he would have sitting or laying on the bed alone. I even got to see my fingertips in the x-ray later.

    Luckily, the fracture was obvious pretty much immediately.

    A slight digression:

    I knew Isaac’s arm was fractured/broken. I KNEW. However, I’ve spent so much time on the end of medical testing, only to be told ‘we can’t see any problems, go home’ that I was having a minor panic attack that nothing would show up. I’ve never felt so relieved in my life to be told that something was broken.

    We tucked Isaac back into my lap, sans sexy lead suit and headed back to see the doctors.

    It was 11pm by this point and we were all exhausted.

    A little while later, because the doctor we were seeing was one of the high ups, not one of the registrars (which is unusual. I wonder if it’s because we’re already under the care of the Paediatrics team?) and he kept getting called away to more urgent things, Isaac was kitted up with a half cast to keep his arm still, bandaged, and we were set free at midnight, exhausted and happy to be out of the hospital, with nothing worse than a greenstick fracture.

    Isaac fell asleep as soon as we drove, thank goodness, and stayed mostly asleep once he was home and I transferred him to his cot with a bottle.

    He’s okay. He’s in pain and tired and is completely pissed off that his right arm (preferred arm) is out of action, but he’s fine.

    It’s going to take a few days for his arm to stop aching badly, so I predict a lot of clinging and general miserableness. I’m not looking forward to that bit.

    We’ll be seen by an Othopaedic Surgeon in a week or so to assess how it’s healing and whether or not Isaac needs a full cast.

    I keep telling him – he’s got to work on his landing. We’ll give him points for the tumble, but the landing? fucked everything up.

    Posted in Headfuck, Isaac.

  11. Isaac and EDS and Bowel Issues

    Parachoc.

    Say it out loud. Doesn’t it sound like it would be a brown sludge, tasting faintly of chemical chocolate and dripping, syrup like from the spoon. It does, doesn’t it.

    So when I opened our bottle of parachoc and poured out white gloopy stuff, the consistency of glue and tasting like oil and sugar mixed together, it wasn’t quite what I was expecting.

    Parachoc is used to help constipation in children – it’s a paraffin based softener, meaning that the stomach ‘apparently’ doesn’t absorb it, leaving it to help ease everything through the bowel.

    To be honest, I’m doubtful this is going to help Isaac’s bowel problems.

    Bowel Problems: A recap.

    I’m not sure we’ve talked about Isaac’s bowel issues here yet. Anyway, he has trouble pooing. Lots and lots of trouble. To the point that sometimes, it takes him 24 hours after we first see streaks in his nappy for him to actually manage to poo properly and not just streak the nappy every 20 minutes. Sometimes it takes longer than 24 hours.

    To begin with, I thought maybe it was a constipation issue. However, with lots of water, apples and veggies, he’s not constipated, he just has lots of trouble with bowel movements.

    My personal feeling is that it’s a ‘floppy bowel’ issue, to do with the Ehlers Danlos – which I know in adults causes all kind of gut issues, mostly because I suffer from them myself. So why wouldn’t a floppy toddler be any different?

    When we saw the Paed the other week, we discussed Isaac’s bowel issues AGAIN and he reiterated that he’d like to try Isaac on Parachoc, regardless of constipation.

    It goes against everything in my nature to willingly feed my child paraffin, but we’re ticking the boxes and at least saying that we’ve tried the parachoc before the Paeds team tries something else.

    I think the sooner we sort it out, the better, because my heart can only withstand so much screaming in pain, as I rub Isaac’s back while he sobs into my lap and tries to poo. It’s not a highlight of my week. And at the moment, we’re doing that every day.

    So Parachoc. Maybe it will help. Maybe it won’t.

    And at the end of the day, at least we will have tried it.

    In other EDS stuff, Isaac has been dislocating his ribs. Le sigh. At the very least, I know how to relocate his ribs. His hand also made an awfully suspicious cracking sound the other day as he pulled away from me. It terrifies me that we’re seeing dislocations at 18 months – he’s so young. I worry about him and his future. Amy is getting bendier too and we’re slowly having to talk about how we’ll manage her EDS and school and Coeliacs and everything all rolled into one.

    I try not to think about the bigger picture. The bigger picture scares me. We’ll just sort through the issues, one at a time.

    Like always.

    Posted in EDS, Headfuck, Isaac.

  12. It’s like being hit by a load of bricks and then run over by a car.

    Yesterday, we had a Paeds appointment for Isaac. Nothing major, just a touch base kind of thing.

    However.

    The kids woke up at 9.30am, 40 minutes before we needed to walk out of our door.

    Okay, we can do this I thought, as I bustled around getting ready for a quick shower – only, when I turned on the water, nothing happened.

    Our pipes – were frozen solid.

    A fortnight or so ago, to prevent the pipes from freezing again, I’d asked Nathan to wrap insulation around the pipes to protect them. He grumbled, but he did it. Unfortunately, it had gotten so cold that everything had frozen despite it.

    I wavered between going to the appointment, or cancelling at the last minute and decided that even without showers, we really needed to touch base. So a quick baby wipe bath later (ugh!) and a frantic dash to get the kids ready, we were on our way.

    Only to run into every. single. set. of roadworks between here and the city.

    By the time we were reaching the outskirts of Hobart, I was getting very ill and preparing to vomit into a book depository envelope. I opened the windows wide, let in the freezing air, took 2 pramin and hoped I wouldn’t have to throw up.

    We parked, just as my nausea abated and I got the shakes. I know once I start to rattle (normally hard enough to make my bedding fall off me if I’m at home) that I’m not going to vomit. Power walking to the hospital, 20 minutes late, I’m not sure what Isaac thought was happening as I held him tightly and shook around everything.

    Unfortunately, once I’ve gone through the nausea/feel better/shakes thing, the next step on the agenda is bone crippling exhaustion.

    I was a mess.

    We made it through the appointment, however, the drive home was less than fun as I huddled in a small ball in my seat, shaking with exhaustion and wishing I could just teleport home, instead of having to put up with 50 minutes worth of driving + stops for petrol and stuff.

    Ugh.

    There are huge gaps in my memory of the drive and that’s probably the best thing.

    Once home, I collapsed into bed with my feet propped up on pillows (the nausea was likely a huge blood pressure dip) and fell asleep, despite Isaac tucked under my chin and trying to poke my eyes out. I was just that exhausted. It hit me like a ton of bricks.

    2 hours later, I woke up, still exhausted and dragged myself out of bed. Nathan had cleaned the house and was in the middle of making dinner. Yay Nathan!

    Today, I feel much better – it’s sunny outside which helps and I slept for 8 hours straight.

    However, I know the exhaustion is lurking still. The Cymbalta, while working amazingly for anxiety, made me rather manic. Which means I used up all my energy for the next month, rushing around like a mad person, getting things done.

    I’ve stopped the cymbalta now (god, I feel like a see saw, I write a post saying ‘It works! It’s brilliant!’ and then another going ‘Ugh, side effects, sort of giving me the shits’ and then another saying ‘I’ve stopped the drug, the side effects were making me sicker than the original thing we were treating’. My body – not fantastic at dealing with meds) and I think yesterday was part of the backlash of stopping.

    At the very least, I’ve stopped being so nauseous all the time – instead it just comes in big waves like normal, my skin is clearing up – it just needs to heal a little faster, and my anxiety, well, I can deal with that on my own, better than I can cope without orgasms and food.

    So yeah, the Cymbalta trial ended sort of badly. Heh.

    Also, seeing as how my exhaustion is just sort of sitting under the surface ready to come back, I’m going to be doing some reposts of my older stuff that you might not have seen. I promise it will be funny stuff at least. Also, if anyone wants to put their hand up and guest post, I’ll accept guest posts too.

    It’s like a Sleepless Nights holiday, only not really.

    Posted in Blogging, EDS, Gotta Laugh, Headfuck.

  13. Treasure!

    Amy emerged from my bedroom this morning with cries of ‘TREASURE! Treasure! Look! I found treasure under your pillow!’

    Before I looked around, I knew what she had.

    My vibrators.

    Again.

    Now, let me clarify why there were vibrators (plural) under my pillow.

    My little egg vibe that I loved, died a sad death around 12 months ago. I was left with a small vibe that vibrates hard enough to make my teeth rattle and a regular sized vibrator that is absolutely no good for external stimulation.

    On top of that, my cymbalta seems to have the added benefit of making an orgasm practically impossible to reach. I’m sure I could get there, you know if I had 6 hours in which to work up to it. Not a chance baby. It’s a cruel kind of tablet that doesn’t kill your sex drive, just your ability to finish successfully.

    So, last night I grabbed down my vibe-to-make-your-teeth-rattle and tried to get there with that.

    No luck, too strong.

    So I got out of bed, hunted around for my regular vibe (which turns down to barely there vibrations, but rattles like a mother fucker) and tried with that.

    No luck. Again.

    So I tried manually, until my wrist fell apart and I was left frustrated and tired and STILL not there.

    No luck.

    I decided that maybe it was because I could hear the TV still – Nathan was still awake. I got out of bed, grumpily turned down the TV and looked at the clock. I’d been in bed for nearly 90 minutes and I still wasn’t satisfied.

    I tried some more and finally, I gave up, unsatisfied. I cleaned up the vibrators with the antibacterial wipes I keep in the bedroom, shoved them under my pillow and still hmmmphing, I fell asleep.

    I forgot about the vibrators until this morning, when Amy came out of the bedroom gleefully shouting about her yellow and blue treasure.

    I quickly whipped them out of her hands and went and stashed them back in my (very high) cupboard, mentally berating myself for forgetting to do that earlier.

    Hi. My name is Veronica and it’s been too long since my last orgasm and I really need a lockable bedside table. Also I fail to learn from past mistakes.

    ***

    Anyone else have the same issues with anti-anxiety meds and does anyone have any suggestions for fixing it?!

    Posted in Gotta Laugh, Headfuck, Sex.

  14. One of ‘those’ mornings.

    When I walked outside this morning to check on Amy, who was ‘going to the toilet and then going to check for eggs and mail, okay Mum?’ I didn’t expect to hear a small voice start screeching -

    ‘DON’T SMACK MY BUM’

    And she was right to screech it at me, as I looked at her sitting in a puddle of wheat; an entire 25kg (55lb) bag tipped out onto the concrete and Amy paddling in it like it was water.

    Amy was ordered to time out while I stomped around the house swearing and hunting up clothes warm enough to see me through the task of cleaning up three weeks worth of chook and duck food. The stomping also served to calm me down enough that I wasn’t going to spend the next 10 minutes yelling.

    Eventually I went into Amy’s bedroom to speak to her.

    ‘What on EARTH were you thinking?’

    ‘I was thinking that it was a good idea’ she sobbed.

    Obviously kiddo. Obviously.

    Well it WASN’T. It was a very BAD idea!’

    ‘It was’ she agreed, still sobbing.

    I smacked her bum, not hard, and left her in time out.

    20 minutes later, I was outside with the broom and shovel, cleaning up wheat – not something I’d been planning on doing when I got out of bed this morning. The wind was icy and cutting and the concrete was cold, as I sat in the middle of Amy’s puddle and wondered what on earth she was thinking.

    Probably that wheat feels nice I thought, as I remembered running my hands through the wheat as a child and begging to be allowed to stand in the feed bin and run my feet through the wheat.

    I finished the clean up and swept the last few handfuls of wheat off the concrete and onto the grass for the ducks to find later.

    Coming back inside, Amy was on her way outside again, despite being told that outside was off limits this morning, due to the wheat incident. What can I say, three year olds, have awesome listening skills. Heh. She came back inside whining, again. Still. Whining lots.

    I dead bolted the door, something I hardly ever do and sat down to finish with emails, before getting stuff together for a shower. The kids were playing nicely in Isaac’s bedroom. Just as I finished the emails, I heard….

    Is that the outside door?

    Wait, it’s too late for the postman.

    FUCK IT. I bet it’s ‘god botherers’ again.

    I’ve not even brushed my hair this morning.

    FUCK IT.

    Then, a very small knock on the door.

    And a small voice.

    ‘Mummy?’

    I unlocked the door, to find Amy, egg in hand, triumphant.

    She’d absconded out of Isaac’s window, leaving him behind whinging.

    Heh. That explains the draught I could feel.

    Time out. Again. For disobeying me and climbing out of the window.

    20 minutes later, I’d showered and was dressed properly. Heading outside to do my standard morning stuff (A circuit of the boundary to pick up rubbish, check the fruit trees and gum trees, a chook head count, a duck head count, feeding of all the poultry, a check of all the places I know the chooks sit to look for hidden egg nests, a check of the blackberries for my 3 new chooks,  a check of the nesting boxes to see where everyone is deciding to lay and finally, making sure all the water containers have enough water in them for the day) I left the kids inside. Like I always do when it’s cold and I’m having an exhausted morning.

    When I came back inside 20 minutes later, after discovering no new nests and that my 3 new chooks are still hiding in the blackberries (long story, they were meant to be locked up for a few days in the pen, but SOMEONE let them out without my permission. I’m lucky they haven’t bolted), Amy was looking guilty and the kitchen was covered in sugar.

    ‘How come there is sugar everywhere?’

    ‘I want a cup of tea.’

    ‘But the sugar!’

    ‘I dropped it.’

    ‘I can see that.’

    SIGH.

    Yep. We’ve definitely had one of those mornings.

    ***

    Annnnd, I know I’m shameless, but would you care to vote for my boobs? #5 is me!

    Posted in Amy, Gotta Laugh, Headfuck.

  15. A confession. Or, a post where I fall apart a little.

    I have anxiety issues.

    Which is not much in itself, but after Nan died, my anxiety spiralled to the point where I’m anxious or stressed for most of the day. I have panic attacks and they’re getting worse. If Nathan goes out to get milk, I watch the clock and panic if he takes longer than he should. Worst case scenarios run through my brain most of the time.

    And really, I’ve always been a little obsessed with the macabre and the broken, but this is ridiculous you know?

    I don’t talk about these things, with anyone really, except to mention them in an understated way. Who wants to hear about how the inside of my head is all fucked up? Plus, my body is so fucked up that talking about any of it threatens to drown me with just how shit it all is. Not letting anyone pity me is my lifeline to not pitying myself and falling apart.

    Since Nan died I’ve stopped talking. I used to be able to talk about whatever was bothering me, but now, I’m repressing everything. Every.Thing. Which is annoying in itself, because the sensible part of my head tells me that talking about the issues would make them only half as annoying, but it seems to stick in my throat. I talk to myself inside my head, but I can’t make my mouth form the words. I have panic attacks and breathe through them, not letting anyone see that they’re happening. Or I hide, in the toilet, in my bedroom, in front of the computer. They pass and I resurface.

    It could be part of grieving, or, I suspect, the grieving has made it easier to repress everything. I don’t have time to fall apart. I pull myself together and go on coping and inside, something is curling up and dying because I can’t acknowledge just how badly I’m doing.

    Fake it until you make it, isn’t that what they say?

    Case in point:

    There is an abandoned house at the end of my street, about 400m away that I want to photograph (again). I live in a tiny country town, on a large highway. I can see the fucking house from my lounge room window, but do you think I can make myself leave the house with my camera and walk up there?

    No. I can’t.

    I can’t bring myself to leave the house alone and walk, 400 fucking metres away to take a photo. If Nathan stood outside he’d be able to see me the whole time and I cannot do it.

    When Amy was a baby, I used to walk into Hobart regularly. I lived about 40 minutes walk from the city and I would just walk. To the supermarket, to the Reserve, to my mothers group. I would walk, everywhere.

    Now, I struggle to leave the house and I absolutely can’t go anywhere by myself.

    And it’s stupid, it’s really stupid. It’s the little things like having a panic attack because I’m outside alone at 8pm in the dark photographing the sky. ON MY OWN PROPERTY. It’s not like I live anywhere dangerous.

    It feels like I’m at the bottom of a well, with the walls closing in on me, telling myself how fucking stupid I was to get in here in the first place and why don’t I just climb out? But I can’t.

    I went to a rheumatologist yesterday and left feeling good about the appointment. She’s worked out a new pain management regime for me, including something to help me sleep. Something that in a larger dose, works as an anti-depressant. And all I felt was relieved because now, maybe the anxiety induced insomnia will ease and at the very least, I might be able to sleep.

    Last night, I fell apart. Everything culminated and I sobbed for hours. Nathan didn’t know what was wrong because I couldn’t tell him and honestly, after 12 months, it feels stupid to be falling apart because I miss my grandmother. I know it isn’t stupid, but it feels it you know? Like there is a set time for grieving and then we’re meant to be okay. Nathan ended up falling asleep and I sobbed more because dammit, can’t you read my mind?

    And funny, I don’t feel any better today. I just feel heavy and tired and sad.

    As I sat in the dark silently screaming and letting myself feel the pain that the grief brings, I contemplated running a bath, or going for a walk. But I couldn’t bring myself to do it, because I’m fairly sure if I’d laid in a bath, I would have slipped under the water and not been able to surface and the thought of walking, even around my property in the dark triggered another panic attack. The dark parts of the night are funny like that.

    Instead, I kicked Nathan because he was snoring too loudly and went and snuggled my sleeping daughter for a while.

    So this is me, writing about it.

    I’m not coping.

    I’m sad and heavy and broken.

    I’m stressed and snappy and probably damn unpleasant to live with.

    My panic attacks are getting crippling.

    I can’t talk about it at all, out loud, but I’m hoping that I can write about it – and the people who matter most all read my blog anyway, so I won’t have to talk about it.

    And at the very least, the new pain management regime will help with the peripheral issues and make me feel less like I’m only holding onto my sanity by my fingertips.

    It’s been 52 weeks since Nan died, exactly 12 months tomorrow and I think I’m falling apart. I think I’m going insane.

    Note: I’m going to give the new painkillers and stuff a go for a month. If I’m still not sleeping/falling apart/having panic attacks, I’ll go and see my GP to talk about it. So please, don’t worry about me too much!

    Posted in Grief, Headfuck.

  16. Telling like it is.

    Things are hard at the moment.

    There. That wasn’t so bad.

    Amy is well, Amy is Amy.

    You know the story of Amy. She’s high speed and full of energy. She never stops, ever and she doesn’t listen. She is smart and beautiful and oh so difficult to discipline, because she just won’t listen, doing whatever she was doing before you caught her, just doing it faster than before, trying to get it completed before you reach her.

    The n0t listening, the lack of easy discipline options and her adamant refusal to just do as she’s told makes life hard.

    As Isaac grows up, I’m getting to see what typical is. Isaac is very typical. He is age appropriate, he cries when he’s growled at, he talks and he asks to be read a story eleventy hundred times a day. To be faced with a child who is just so very normal, mentally, makes me realise just how different Amy is.

    You know, she doesn’t ask why? Or answer why for that matter. If I ask her why she did something, I get ‘because I did it.’ ‘Amy, why did you tip out the sugar?’ ‘Because I tipped it out.’

    There doesn’t appear to be any reason behind the WHY she did something. At least, not any reason that she can articulate, and god knows, language isn’t our barrier here.

    She says ‘Lellow’ which I know is normal, but it annoys me and so I work with her, on saying ‘Yellow.’ She can say the Y sound perfectly, with yes and yeah and yell all leaving her mouth perfectly formed.

    But yellow? No. She won’t (can’t?) say it properly.

    So I tried to get her to say Yellow properly the other day. She had a meltdown and spent a few minutes screaming at me. Like, screaming, with words and I will not say it and shut up Mummy.

    I was shocked, she got time out for not speaking nicely and I realised, I’ve been having to give more time outs for her screaming at me in anger lately.

    This is proper screaming, not wordless meltdowns that I get from Isaac when I fail to understand him and he gets frustrated and loses it.

    Amy is hard to parent. She always has been, she doesn’t respond to smacking, to yelling (except lately to yell back at me, and seriously, that doesn’t achieve anything), to anything. She seems to have no idea of cause and effect, or she doesn’t care about it. I don’t know.

    She’s just different and I’m struggling with those differences.

    You know I’m not allowed to sing nursery rhymes to Isaac unless Amy allows me to? Or count. If she doesn’t want me to count, she’ll scream at me to stop counting.

    It’s hard and frustrating and the lack of listening, paying attention, doing as I’ve asked, is doing my head in.

    So.

    And this is the hard bit.

    We’re organising to have Early Intervention take a look at Amy.

    My name and number have been left with a lady who comes highly recommended and Amy has been discussed with her – she is very interested in talking about her issues.  I worry that this girl of mine is already walking around with enough labels, with the EDS and the coeliacs, but I am really recognising that I need outside help. Even if it’s just someone to look at Amy and tell me I’m not insane for finding her challenging. Really, I’ve got no idea how we’ve made it through this long, what with the 12 months worth of screaming and years of sleeplessness and everything else.

    Really, admitting there is a problem is half the battle, right?

    So here I am, admitting that we need help to understand Amy, to work out how to teach her things without her losing it and hopefully, teach me better ways of dealing with her less than stellar behaviours.

    Because she is hard to deal with. Insanely hard sometimes.

    And watching her brother grow and develop, I’m noticing all the things that Amy never did.

    There. Telling it like it is.

    Posted in Amy, Headfuck.

  17. On the nature of living with a (mostly) invisible diability.

    If you watch me walk down the street, you probably wouldn’t know that I had Ehlers Danlos Syndrome. Mostly because I try not to get into positions that end up with me walking down the street – which strikes shopping off my list.

    If you notice me walking, I probably look okay, to you. You don’t see the slight hitch in my step as my hips sublux over and over again and you (hopefully) don’t see the intense concentration on my face that shows I’m placing each foot consciously, making sure they don’t turn in/fall apart/trip me over.

    Most of the time, I don’t even notice these things either. The conscious foot placing has become second nature, like making sure everything is in it’s place before I stand up. Falling isn’t as fun as it sounds. I’ve put up with them for so long, ignored them for so long that they pass me by. I don’t notice how hard walking is, or how my hips slide around in the joint.

    Until I have a major crash and I discover that I’ve burned so much energy being okay, that I can’t be okay anymore.

    When I dislocated my knee at the beginning of the month, I was crashing and crashing hard. I don’t pay much attention to my daily dislocations, mostly because they’ve happened so often that they’re nothing special anymore. I do however say fuck a lot as I busily try and relocate things and I have been known to kick Nathan in the shins for huffing when asked to reduce my many many dislocated ribs.

    My knee however was different. It was dislocated badly for almost 3 hours, leaving me unable to move. By the end of the 3 hours, I’d gone from being mostly okay with just some minor pain (when the fibula was totally dislocated) to openly sobbing as it slowly slowly relocated over whatever tendon was holding it out of position.

    That was the straw on the camels back. The next few days I spent curled up in the recliner, braced and taped to within an inch of my life, not really able to do much of anything except issue orders and dole out cuddles.

    I’m still not recovered from the big crash. It’s probably the hardest I’ve pushed myself and the farthest I’ve fallen since I was in High School and determined to be like all the other teenagers competing in our Rock Eisteddfod. Yes, I did it. I also spent a month in bed after it.

    It hits me hard after a big crash, just how bad my EDS has gotten. My left shoulder slides around in it’s joint and my pelvis feels like it’s a wobble board. My ribs fall out of place and my collarbones forget how to hold together, along with many many other things.

    And it’s stupid little things that drive me insane. Not being able to hold my arms up long enough to brush my hair, without running out of energy and needing to sit down where ever I am. Being exhausted, but at the same time, being completely unable to sleep. And if I do sleep, waking up with more dislocations than I fell asleep with and hurting oh so badly.

    People don’t see that when I’m out and about though. Hell, people don’t see it full stop. Even Nathan doesn’t see the bulk of what dislocates and how bad it is, day to day. If I told him about every dislocation I’d never get anything else done.

    Ehlers Danlos is an invisible disability and you can’t see it on me. Not unless you’re bendy too and can spot the symptoms across a waiting room. Unless I’m wearing a bright pink wrist brace (which I’m totally going to start campaigning for, the beige colour is shit) you can’t tell.

    Unless I’m exceptionally grumpy, no one knows that I’m feeling crappy. On days when I simply cannot brush my hair without needing to sit in the middle of the bathroom floor exhausted, I don’t leave the house. Easy as that.

    May is Ehlers Danlos Syndrome awareness month, so this is me, making you aware. Because this month, I don’t think we’re seeing any doctors and I’m getting a little tired of having to go over the same thing over and over again with our doctors. EDS affects everything. My collagen works like sun soaked chewing gum, unlike most people’s, whose collagen works like snappy rubber bands. Things hurt. My pain is bad, my joints are bad and I’m tired.

    And people can’t see it.

    Which is a curse and a blessing in the same breath.

    Thumb Hypermobility

    Wrist and thumb hypermobility

    Little Finger Hypermobility

    Ankle Subluxation

    More photos here

    Posted in EDS, Gotta Laugh, Headfuck, Life.

  18. So, mothers day. What a fuck up.

    Mothers Day.

    I was meant to sleep in, be woken nicely by a cup of tea and snuggly children, before enjoying a lovely relaxing day.

    That however, was not what happened.

    Amy woke up and I got up with her, to grab her breakfast before diving back into bed and prodding Nathan awake. After Amy had come to bed too and stuck her hideously cold feet on my stomach, I was more awake than asleep. Isaac woke up shortly afterwards and despite kicking Nathan out of bed to deal with the kidlets, I was soundly awake.

    Seven also spent a good deal of time barking outside my bedroom window.

    So I sucked it up. I got up and had a cup of tea sitting outside with Nathan. I probably should have realised then that Susie wasn’t about when I didn’t have to fend off muddy puppy paws and LOVELOVELOVELOVE. Heh.

    I showered, interrupted lots by my small children, before getting dressed and realising Nathan wasn’t about.

    I didn’t think anything of it until he came inside looking shaken.

    Someone had hit Susie with their car. Stopped to move her off the road, and yet, they hadn’t bothered coming to knock on the door to let us know.

    You know, whoever you are? Thanks for that.

    Now, it’s not like I live in the suburbs. There are 2 houses within a 500m radius and we’re right next to each other. And Susie was hit right outside our house.

    Sigh.

    From the look of her, she died instantly and for that, I’m grateful.

    Needless to say, I wasn’t expecting to spend mothers day morning watching Nathan dig a grave for my dog.

    We went out shopping anyway, grumpy as we were, vowing to kick people in the shins if we got a chance (we didn’t).

    That was a crap shoot too. Insane drivers – a P plater who was more interested in talking to her friend than staying within the road lines, a HUGE SALE that was more a bunch of junk thrown into bins and priced and two children determinded to disappear in different directions. We won’t mention the many and varied dislocations. My ribs, I think they’ve forgotten what their purpose is in life. No longer are they a protect the lungs and heart cage of bone, instead they’re a slidey held together by chewing gum bundle of pokey bits.

    After we’d found both Sushi places closed (what? I wanted sushi for lunch), we gave up and went to McDonalds. At least we know their chips are GF for Amy. It wasn’t even pleasant to have burgers, which are normally a pretty large treat.

    I finally convinced Nathan to take me driving through the Derwent Valley, so that I could take some photos, only to discover a few minutes down the road that I’d left my SD card at home, so photos weren’t on the plan after all.

    Sigh.

    Fucked up day.

    After finding Susie dead, the rest of the day didn’t really have a chance did it?

    Tomorrow. Tomorrow will be better.

    Susie

    ***

    Other news, installment #2 of my Welcome to the Interwebs series is up on the other blog. You should read it.

    Posted in Animals, Headfuck.

  19. Honesty

    When I started blogging, I swore I would be honest. I was having a hard time parenting my high maintenance baby and I naturally gravitated to blogs who were ‘telling it like it is’ with the dirty bits of motherhood not spit shined up for public consumption. That’s how I liked my blogs, dirty and real.

    And so, I swore I would be honest, which I have been. I’ve also been guilty of pulling the funny bits out of motherhood and writing about them, and not about all the crap that I seem to spend every day slipping in. Figurative crap, not actual crap. For the record.

    So. Honesty.

    ***

    I dislocated my knee Sunday night. It was bad. I screamed and then I was stuck, unable to move at all, in front of the computer with a fully dislocated fibula and two wakeful needy children. Yes, Nathan was about and he child wrangled, but he has a tendency to huff and so the more he huffed, the more stressed I felt and the worse the pain got. Having a dislocated knee is not fun. Even less fun when it stays out for nearly 3 hours, with your partner asking if maybe you should ring the nurse hotline and me asking what on earth they were going to tell me that I didn’t already know. Damned if I was going to hospital for a dislocation I’ve done lots before.

    About 2 hours in, Amy came over for a cuddle, despite me telling her not to touch me (loudly and with slight screeching) and she bumped me and my knee twisted slightly.

    Absolute agony.

    I screamed, louder than I should have, for her not to touch me.

    It hurt. It fucking hurt. She twisted me just enough to make my fibula move from it’s completely dislocated but not insanely painful place, to it’s I might just grind against this bone right here and make you scream.

    I screamed and Amy screamed and as I sobbed, she sobbed.

    It was bad.

    Nathan cuddled her, while I explained, through my sobbing, that I wasn’t angry with her, but that my knee was really very painful.

    15 minutes later and much agony to boot, my knee went CLICK and the dislocation reduced. Of course, it promptly tried to pop out again while I held it in place, crying, while we braced it and Nathan helped me hobble to the toilet. I was pretty close to wetting myself. Three hours, it’s a long time.

    But going back, to me explaining to Amy that I couldn’t cuddle her and she needed to stay away, and her going ahead and doing exactly what she wanted.

    This is what Amy is like.

    All

    the

    time.

    She doesn’t listen. She is very THREE! at the top of her lungs and she goes ahead with whatever she wants, regardless of what I’m saying.

    Which you might say is just THREE! and that’s very possible, but this kid, she doesn’t listen. It’s like, once she gets an idea in her head, her brain shuts off to me telling her no. In fact, the louder I screech NO! and run towards her, the faster she does it.

    That’s how we ended up with a whole carton of milk spilled on the floor.

    And some days, I am just at my wits end because this kid, I love her but fucking hell is she hard to parent. Time out – doesn’t work. Smacking – doesn’t work. Nothing seems to get through to her as a consequence for her actions.

    She is hard and she is beautiful and love her, but oh man, some days, I just wish that I didn’t appear to be the only one parenting a child who is so high maintenance. I’d love to teach her to read, just for the peace it would give me, but she refuses to learn anything she doesn’t want to.

    Like numbers – she can count, but god help you if you try and count with her. Or correct her. Or try and show her how the numbers look on paper. The same with letters. She knows them, but she does not want to learn how to recognise them. She just will not do anything she doesn’t want to. Stubborn as anything and smart to boot. God help me.

    So, honesty.

    I yell too much. I say no too often. I frequently am stuck tearing my hair out because this kid won’t listen and I wonder, what is different with her to make her the way she is. I wish that things were easier, but they’re not and she is hard to parent. Time outs are frequent. And this is all when she’s gluten free and colour free and so much nicer than she used to be.

    She is hard. Three! is hard.

    No one tells you these things when you get pregnant.

    They just don’t.

    Posted in Amy, Headfuck, Life.

  20. Happiness in Small Things

    After Nan died, I moved through my world like I was in a fog. I was shattered and a grey fog seemed preferable to anything else. After all, I had small children and things to do, I didn’t have time to be crippled by grief, no matter that I felt shattered inside.

    There is something about watching someone you love die in front of you that can leave you a bit broken you know?

    And so that is how things continued. I moved through my days, bundled in a fog of I-refuse-to-feel-anything until I got to the point when I forgot how to feel anything. I internalised all of my grief and hello fog, you’re like a warm woolly blanket. Comforting and a little bit hard to get rid of because I might need you.

    Nan died almost 10 months ago and while outside, I am coping, inside I am still shattered.

    If I think about it, or her, I fall apart.

    So I just don’t.

    I don’t look at photos of her, any more than merely letting my eyes slide over them.

    And I don’t speak about her, unless it’s a little bitterly, with a dose of realistic philosophical thrown in to stop it hurting quite so badly.

    There are still things that make me happy though and at this point, I need all the small doses of happiness I can get.

    Watching the world from the other side of a camera lens, that makes me happy. There is something about laying almost flat on my stomach and taking photos of toadstools or flowers that makes everything else easier to deal with. From the other side of a camera lens I feel like I can breathe again.

    The simple act of taking photos, and coming inside to see how they turned out, it makes everything easier to deal with somehow.

    Focusing on the small things leaves the big things to take care of themselves.

    I am also the first person to admit that I can get a little obsessive when things make me feel happier or fulfilled.

    A long time ago now, I used to work in a kitchen. The fast paced lifestyle left little time for thinking about other things and food, well, food is a huge passion of mine.

    So when I discovered that making my own pasta sauces/jams/chutney and then photographing them gave me a small measure of happiness and fulfilment, I did a lot of it. Currently I’ve run out of jars and I’m itching to buy more strawberries because dammit, at least then you can see the results of all my hard work. I have something to show for working hard at it.

    Grief isn’t like that apparently. No matter how hard I work at ignoring it, or even trying to deal with it, I’ve got nothing to show for it. It still hurts just as much when I poke the hole, so I leave off the poking and move back to things that make me happy.

    Small things.

    Gardening makes me happy. The simple acts of picking my own produce, that’s seeing results from hard work.

    We planted our six gum trees on Sunday. When we were done, I wished for another ten trees, another twenty even. Something to show for traipsing all over the yard, digging holes and dragging a hose around. I didn’t want to stop planting, because playing in the dirt, it made me feel something again. And I’ve not been feeling very much since Nan died.

    I sat in the middle of the yard yesterday and just sat. With a camera in my hand and more toadstool photos on my memory card, I just sat. And I looked at the sky and I looked at my poultry, free ranging fifty metres away. I thought about how hard missing someone is and how much work grief is, for very little result. I thought about all the little things that make me happy and realised that I need all the happiness I can get.

    Because even though the little things make me bounce with excitement, the bigs things are going to be there, waiting to be dealt with. Sitting on my shoulder, just waiting for a stray thought or word to bring me undone.

    I am not a bouncy bubbly person. I am realistic and a little bit cynical. I am philosophical and I am rather snarky.

    And at the end of the day, I will always be the kind of person who wryly tells her dying grandmother ‘Good thing it’s not leprosy, or you would have just pulled your ears off.’

    Because that’s how I cope.

    Happiness in small things.

    Posted in Cancer, Grief, Headfuck.

  21. Missing

    A year ago we sat around an outdoor table, surrounded by family. Easter had coincided with Nan’s birthday and we were barbecuing and celebrating, knowing in the back of our minds that it was likely to be the last birthday and Easter Nan celebrated.

    We were of course hopeful that that wouldn’t be the case, but we were wrong.

    A year ago we laughed and played and Isaac napped, a small baby still, asleep in his bouncer.

    Slowly everyone left and I stayed, curled up in Nan’s armchair, reading her cookbooks and discussing everything under the sun with her as we pointed out likely recipes. Amy ran around, eating chocolate, while we waited for Isaac to wake up.

    Nan was in the middle of chemo and horribly sick.

    It was hard to watch, knowing that we couldn’t change it, or fix it.

    However, it was warm and comfortable, talking.

    Of course, we discussed her cancer – we always did.

    We didn’t know that almost 10 weeks later Nan would be laying dying in a hospital room while we stood in a ring around her, giving her permission to leave.

    Of all the things I miss, the common sense advice, the phone calls, the visits, just because, I miss curling up in the chairs at Nans and just talking more than anything else.

    I miss her.

    So much.

    April has always been Nan’s month, her birthday and Easter intertwined always.

    Today would have been her 65th birthday.

    Happy Birthday Nan.

    I miss you more and more each day it seems.

    Posted in Cancer, Grief, Headfuck.

  22. It’s all a bit surreal.

    My period was due over a month ago – and it didn’t arrive.

    I vomited, I swung wildly between happy and angry and my sense of smell, well, wow. I felt pregnant.

    And then subtly, I didn’t anymore.

    Pregnancy tests, that I’d waited to take, said negative, backed up by a blood test from the doctor, which was mostly inconclusive, but still negative.

    I got an almost, barely there positive test in the beginning. We couldn’t tell properly if there was a second line, it was so faint, and I figured that another test in a few days would show a proper result. Only it didn’t.

    My doctors opinion, most likely a blighted ovum and something went wrong, early on, leaving me with barely any HCG by the time I had blood drawn. Let’s just wait until you bleed naturally. Or in another few weeks, we can put you on the pill and try and stimulate a period that way.

    He didn’t want to investigate further and actually, I’m glad he didn’t. I knew I was pregnant, just like I know that something didn’t go right and I am not having a baby.

    I continued to vomit, while still not being pregnant.

    So I put myself on the pill, tablets I had left from the 6 weeks of bleeding prior to conceiving Isaac.

    Monday night (while still on the pill) I started to bleed.

    So it’s finishing and even as I’m cramping and in pain, I am glad to be getting it over and done with.

    In my mind, I am losing a pregnancy, not a baby. Something went wrong when cell A tried to join to cell B and they didn’t equal a baby.

    And that’s okay, it truly is.

    And I’m okay. There were tears when I got the blood results and I’m missing my grandmother more and more,

    but I am okay.

    I’m phillisophical about the whole thing.

    Except the cramping. That just kind of sucks.

    ***

    I truly am okay, so please don’t feel sad for me. If you want, you can share your stories of loss here and we’ll all hold hands and smile wryly at each other. Plus, the lovely people at The Online Circle, sent me some Cadbury Fairtrade chocolate to try and that arrived today, which was lovely.

    Mmmmm, tastes guilt-free.

    (Actually, it tastes delicious. The ingredients are slightly different to the other block of Cadbury chocolate I had in the cupboard and the Fairtrade seems to be more … pure? somehow? Delicious anyway.)

    ***

    In other news, I bought myself a Canon 100mm Macro lens for my camera and I am in love.

    LOVE.

    Love.

    Praying Mantis

    Posted in Headfuck, Life.

  23. Just keep swimming, just keep swimming…

    I keep repeating to myself. I will NOT have a panic attack. I will not. Nope, not at all.

    It’s not working of course, but I’ll keep repeating it anyway.

    ***

    When I was little, Mum and Dad slaughtered a pig in the middle of summer. Only to have their refrigerator and freezer die that same day. Much stress ensued and much pork was eaten.

    Mum is planning on slaughtering her pigs this weekend. We’ve been discussing it, knowing that a fair amount of the meat was going to be stored in my freezer.

    ‘How’s your freezer?’ asks Mum this morning.

    ‘Fine’ I said, ‘waiting for the pigs!’

    HA! HAHAHAHAHA. HAAAAA.

    HAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA.

    UGH.

    This morning, after I spoke to mum, I opened my freezer.

    And everything was defrosted.

    Everything.

    Seems that the power surge we had a few days ago has blown my freezer up. The lights are on, but the temperature is not frozen. Sigh.

    I rang my insurance and yes, it will be covered, just jump through these hoops, stand on your head and spin three times.

    Fine, I can do that.

    Everything was fine.

    FINE.

    Fine.

    Until we started to do the washing.

    Now, the washing machine is plugged into the same power point as the freezer. Most everything else we own is plugged into surge protected boards. Thank God.

    Half way through a wash, the machine stopped. It started playing up, all the buttons flashed and it refused to spin anymore. Fine. Stop/restart. Same issue.

    Finally we got a load of washing finished.

    And then everything went downhill.

    It’s a front load washing machine, which means that it has a door lock, to prevent the door opening midcycle.

    Seems the door lock is electronic and has forgotten how to disengage.

    On top of the machine not wanting to spin or wash or WORK.

    Broken.

    I rang my insurance again, and got the now broken washing machine added to my recent claim. They’ll repair it, or replace it, depending on what the electrician has to say.

    Fuck. It just never rains does it?

    ***

    In other news, Panic Attacks. The Reason For.

    Go and read this post. Go on, I’ll wait. La. lalaalaa. Laaa.

    Right, you’re back?

    Hello.

    The hospital rang today.

    We have an appointment in about 3 weeks, to see the Paediatric Coordinator (the head honcho) about Amy and Isaac’s genetic test results.

    I’m worried because when the orders for the Coeliac genetic screen was put through we were told that our regular Paed would give us the results. Then, we were told to ring for the results. Then, we were told the results were too complex and involved to be discussed over the phone and could we please come in for an earlier appointment. Oh and by the way, you’ll be seeing Dr B, the big boss guy.

    Today, the nurse rang to let me know about the sooner appointment. She made a point of telling me it would be with Dr B, and not one of the Registrars.

    Shit.

    So I’m a little stressed.

    A teensy bit.

    A whole lot.

    So, Dear Internets, what do you think? Stressing for no reason, or justified? Where you are, would you have to see the Boss Guy just for a simple Coeliac Gene Screen?

    Posted in Headfuck, Life.

  24. Blocked IP addresses and Conspiracy theories.

    I noticed an odd referring URL today when I was checking my stats.

    So, as you do, I clicked to follow it back, to find out where people were clicking from.

    I wasn’t expecting to find this though:

    The web server you are attempting to reach has a list of IP addresses that are NOT allowed to access this site and your IP address is on this list.

    Maybe poking at the Premier gets you blacklisted.

    Heh.

    ***

    Actually, I was under no illusions I would be allowed to check out where the visitor had been referred from, due to the Admin part of the URL. I bet if *you* click over to the site, you will get the same blocked message.

    And of course it’s probably just a wording issue that SHOULD say ‘IP addresses of ALLOWED computers have been logged and unfortunately, you aren’t on the safe list. Go away.

    But what if it’s not?

    According to my stats, they clicked over to me a bit earlier from Bleeter’s blog – Bleeter the Serial Government Botherer – so it *could* be a blacklist.

    Things like this amuse me.

    Thoughts?

    ***

    Please don’t forget I have that amazing competition running. Feel free to enter your blog, no obligations asked after the month. Your ad will be seen by around 12,000 people over the course of the month, give or take. Entries are open for another few days, until the 1st of March, so send me an entry!

    Posted in Blogging, Headfuck, Soapbox.

  25. How I Met Nathan Part II

    Part One here.

    I organised to meet up with a friend -A- who was visiting from up north. She met me after work and then Nathan drove us back to where I was living. We arranged to have drinks at Nat’s new place and I went home and grabbed a change of clothes. I talked to my boyfriend, while A listened.

    Her comments after I finished talking to him? ‘He treats you like shit Ron’. It’s not that my boyfriend treated me like shit, he didn’t really, it’s that we were 16 and we’d been together for well over 2 years. Familarity and everything. He was a nice boy.

    And so, we went and got drunk. All together, Nathan and I, his older brother, a housemate, and my two friends, A and K. After a few drinks, I stopped drinking and instead, watched everyone else get drunker. Eventually everyone passed out or went home except for Nathan, his housemate and me.

    We didn’t do much of anything except talk.

    Nathan snuggled me, he looked into my eyes and talked to me, he kissed my fingertips. He made me melt.

    His housemate left in disgust.

    The morning came and I was sober. I had had no sleep, I needed a shower and I started work at 2pm. I also realised I couldn’t keep going the way I was going and that it wasn’t fair to my boyfriend. I talked to A, I talked to Nat’s housemate, I talked to thin air. I begged Nat’s housemate to give Nat my number. She was reluctant, but said she would. She didn’t.

    9am that morning found me back at my boyfriend’s house, sitting on his bed, telling him that I wasn’t ‘in’ love with him anymore and crying.

    I regret how I told him. We had been together for 2 and a half years and I didn’t have the decency to let him wake up properly before dropping the bombshell. I regret that.

    I showered and cried and got ready for work. Before I left, I packed a bag and my now ex and I talked, a lot. As I left for work, we parted with a hug and a kiss, on sort of good terms.

    I walked to the bus stop, hung over and exhasted. That night at work was the longest shift I have ever worked.

    I crashed the night at Ex’s grandmothers house. She was lovely enough to let me stay (my shifts all started at 6am that week and she lived close to work) for a night or two and to hand me tissues as I silently cried.

    Then, I spoke to my mother about everything and I went home, on her orders. Back to my grandmother’s where I was living, except when I was staying at my boyfriends house.

    It was the smartest thing I have ever done.

    A few days later, Nathan and I met up for coffee before I started work and spent 3 hours talking about nothing. The next day, he picked me up from work and drove me home. He didn’t go home that night, or any night afterwards.

    And that was that.

    We moved into his house not long afterwards, and from there, back to my parents after a large falling out with his housemate.

    We rented our first flat and suddenly, here we are, 5 years later.

    It’s been a rollercoaster these last few years. We’ve now got a mortgage, two babies, two dogs, two horses and two cats. And for all that happened to get us to this point, for how ill I still feel when I think of some of it, for how unproud I am of some things, I wouldn’t change a moment. Because here we are, and I am happy.

    Posted in Headfuck, Life.



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