Month: October 2015

Soooooooooo……………………. we did it!!!!!! No, we didn’t run a marathon… pretty sure we didn’t even run one hundredth of a marathon! But we walked the three km part, raised a few grand for Feel the Magic (which are the organisation that are sending the kids and I to Disneyland next month) and are feeling pretty happy with ourselves in the part we’ve played to help this awesome charity. It’s seriously always at times likes these where I realise how fabulous my friends and family are. The support we were given through this time, both emotionally and financially has once again blown my mind. This year has been a toughie….. What am I talking about? This past two years and three months have been horrendous….. I know I say it every time we talk, but damn things get harder and harder…… Why? Buggered if I know…. I stupidly assumed that life would get easier, you know, once you’ve hit rock bottom and all that. The past four to six weeks in this house has been hell to say the least. The tension a thousand times higher than what I already thought was as high as it could be….. I have a feeling that my reign of crazy arse strength is dwindling…. and perhaps I have finally dropped the baton, so to speak. This marathon which is my actual life, is the toughest one I’ve faced. I’ve said it before and I’ll say it again, it’s not socially acceptable to still be grieving at this point, this deeply, two years and three months after the event. I know you say that’s bullshit…. but it’s true. I shouldn’t be still screwing up at work this far down the track, turning up late and mucking up little things that I should be able to do standing on my head…… I shouldn’t still be drinking so much, and yelling at the kids when I’m hungover and have zero tolerance…… the kids should be sleeping better and not still crying at night….. we probably shouldn’t still be seeing multiple therapists a week seeing at though it feels like a lost cause…… but all these things are really still happening. Day in and day out. We fight every hour that we’re awake…. and the girls have pretty much decided that I’m a fucking crap Mum, because I have no fuse, and lose it over the smallest things. These things are not in my head. They are fact. How very, very sad….. Anyway, I have come to the realisation that I am not alone, because through my Widow support groups I can see that this is now “normal.” It’s normal if you have experienced someone that is ridiculously close to you being torn out of your life like a page from a book. So it is part of my new “normal.” I don’t really like it, but it was not something that was offered to me, nor something that I could choose to not do. So here it is. I am so grateful for this wonderful trip to Disneyland next month. In some ways it couldn’t have come at a better time. It was well over a year ago that my sister nominated us to go, and it has felt like a dream in the pipelines for so long. I have wanted to escape so many times with the kids, and just spend a few days pretending life was easy again….. so here is our chance. I am hanging to see them laugh and smile and light up with excitement. It’s just too far in between “great days” for my liking. Even with the wonderful, new and interesting things that have been going on in my life as of late, (and they have been amazing….) there is still this constant feeling in my guts that is hard to shake, that you can’t get too happy….. or complacent. I want to live life like there’s no tomorrow, because I know now that there may not be….. but something continuously reminds me that I’m not quite there yet. Faaaaaaaaark……… It’s so bloody frustrating….. I’m ready to be happy again thanks life?? Can you help me out a little????? xxxx

 

It’s amazing how the most incredible relationships in life can go horribly wrong…….. Whether it be the end of a partnership where kids are involved, or the death of a loved one….. with or without kids involved. Those who you once adored and spent many hours with, can slowly fade out of your life as though they were never in it to begin with. You’d never believe it was going to happen….. but like an intense friendship that you’d bet would last your entire lifetime……. sadly it does. And from what I’ve seen over the last couple of years, it happens more often than not. Relationships…… with your kids, your partner, your folks, your in Laws, the neighbours…… it doesn’t seem to matter, because if you don’t see eye to eye…… you just don’t see eye to eye. There are some with whom it doesn’t seem to matter too much, and you can survive this mismatched understanding without too much care…… but if you don’t see things the same way as someone you love, that you see all the time…… damn it can make for a difficult time. I know now, and particularly after nearly two years of counselling with my girls, that Rubes and I don’t. We don’t fight well either….. and for two fighters (yes, she inherited that from her Mum….) that is not a good mix. Finally we have started to piece together why we don’t gel so well…. and it’s terrifying because how do you change the unchangeable? I can change…. to a certain degree….. (no one ever wants to, lets be honest…) and I’ve had to over the years. I pick my battles with that kid, and I have allowed so much to pass that I’d never have let pass in my life “BC” (before children.) But with a stubborn unchangeable Aspie, a dead hubby and two years of hell…. well….. I’m kind of open to other peoples suggestions right now. She has this incredible way of manipulating every situation to the point where I can’t even remember out of utter exhaustion what the argument started over and then she senses my weakness and runs with it! My memory is shit at the best of times, but throw in a little post traumatic stress, short term memory loss…. Arghhhhh…. that kids runs rings around me!!!!! Then there’s my sweet little Pops. The one I used to say to Trent “Thank God for her, hey????” And we’d breathe a sigh of relief. Not because she was better than Rubes by any means….. but because even she would come up and tap us on the back at the age of five and say “It’ll be alright…..” after one of our many failings with trying to get Rubes to see the error of her decision that day, or for hurting our feelings with her words. And now, two years into this new world of ours minus the big guy, she is the one that needs consoling. 24 hours a day. Her new anxieties of the world – that I will die horrifically….. and it’ll be because she has bad thoughts….. a lot. Every hour it seems she is a little teary…. and when I finally drag it out of her if she doesn’t give it up immediately, it’s because she’s has inappropriate thoughts…… or that she is thinking of horrible things that would hurt my feelings…. and she is positive if she doesn’t tell me what she has just thought about, I’ll die… yet she’s also sure if she does tell me, she’ll hurt my feelings. So she is in turmoil. She also, since December last year, doesn’t want to go back to Pop nights, which is one night a week when her adored Pop comes to stay so I can go out without the kids. She loves time with him, but hates me being anywhere other than at home, safe with her. Children don’t forget that you once promised them nightly to always be there for them. They NEVER forget this once someone has gone and died, even if they understand that that person did not want to go. So I cannot console her this way anymore either. The in Laws…… I do love mine….. I’m lucky. But even if you had a decent relationship with them all to start with when your partner was around, everything changes once that main common denominator is gone. It places the most pressure on a relationship that I can even explain…. to go on and love these non blood relatives that you accepted whole heartedly before, but try and behave as though the pink elephant in the room is not there, WOW that is one incredibly hard thing to do. How much did we overlook and tolerate because they were the parents of our loved one? Or the siblings/Uncles/Aunties/Cousins of our loved one……. We put up with the challenging parts in our own family, because we have spent a lifetime with them….. But I wonder how these in laws view us now too, after their main reason for seeing us is gone. The cracks start to show, your walls start crumbling, and things that shat them about you before, will now eat away at them daily as they weep for their child/brother/sister etc probably wondering why it was them and not you that had to go. I am by no means saying that this is the situation with me and mine, but I assure you that none of our relationships will ever be the same again. Of that I am 100% sure. I have learned a lot from this recent support group that I joined in Box Hill. Someone threw it out there one night that their relationship with the parent in laws had totally turned to shit. And it opened the flood gates…… the amount of estranged families that had been newly created from the death of their partner astounded me. There were stories of entire families that had removed themselves from the remaining husband or wife (whether they had kids together or not) and I couldn’t believe how common it was. How could you turn on someone in their greatest time of need? And surely you can put your bullshit aside for the sake of the kids? A lovely man who’s wife had lost her battle with cancer only a year after they’d lost their young son was telling an horrific story of how the in laws had tried to take him to the cleaners after he “only offered” them her investment property and not half of the very home they had all once lived in….. What the actual fuck???? How deep in the grief can you be that you have lost sight of what your child that has just passed away would have wanted. If they chose this person to have children with and spend their life with…. surely you can swallow your pride and honour their memory by loving that remaining person long after your loved one has gone? I know it’s not easy….. I have been left with my own issues with my husbands family….. but nothing I hope that can’t be worked on and worked out. I would hate to screw up the very link that I have left to my gorgeous husbands loved ones. It would upset me very much. What I have learned however, through this tragedy…. is that NOTHING is forever. I am trying to live by the rule that you should never assume what will happen next, you should never give up trying to repair relationships that are worthy of fixing, and you should always remember what your partner would have wanted you to do….. knowing that sometimes all of the above is not always possible and some things are just plain out of our hands. (Like my mate from the support group who has tried and failed to please his late wife’s family.) I think this is all you can do to be honest. xxx

So did you know that you can go into parenting with all the best of intentions…. but it’s still totally possible to become the parent you swore you’d never be? Yup…. that’s right. Your very own child can create the parent you have hated the thought of being your entire life….. it’s almost as though they have their hand up your arse and they are the puppeteer and you are their puppet. How do I know this?  I created such a child myself. I know I didn’t ask for a kid with special needs….. nor did my child ask to have them.  But none the less here we are…….. I have written many blogs about my girl Ruby, and it is common knowledge that she can shit me up the wall! I do love her to pieces, but her incredible ability to push that big red button, over and over and over and over again, never ceases to astound me. These holidays we had to find an alternative to her medication. I knew we were in for a rough trot…. but it turns out that I still, as per usual, can underestimate just how tough things can be for her. She has been on an anti anxiety tablet that she has “needed” to be on for five years. I am happy to share this taboo topic because we tried everything we could under the sun to help her without medication for seven long years….. and her OCD and severe anxiety was controlling her little life, and it was an horrendous thing to watch.  The day we discovered this miracle tablet, her need to tap the rungs of the ladder twenty different ways to climb up into her bunk each night stopped, the chronic hand washing that saw her cracked and bleeding hands re opening and bleeding multiple times a day stopped, her fear that the very ceiling above her head would most certainly kill her in her sleep stopped, and the ridiculous rigmarole that she had to endure every day by having to walk out of school each afternoon using the exact same steps she had used at 8.45am that morning stopped…… Life started to become enjoyable again. Her Aspie ways will never change much, such as her inappropriate use of language at the most inappropriate of times, the cold and short way she can sometimes react to the most emotional of situations, the way she views the rules and this world (they are HER rules and this is HER world) well these are the things we have had to suck the hell up and accept to be quite honest. Poppy herself at the ripe old age of eight reminds me often that “She doesn’t mean it Mum, it’s just the Asperger’s…..” “You know she would help you with that if it wasn’t for her anxiety” etc etc. She has become my Trenton in her wise and beyond her years understanding of this sister, from whom has by most parts treated her like shit for most of her short life. Although it is clear that she loves her dearly, and Ruby reciprocates this love….. because they have a very special relationship in that Ruby knows that Poppy will always stick up for her, even against me. I wish I had a little more patience to take on Poppy’s advice. Over the last 8 months it has slowly become clearer and clearer that Ruby’s miracle tablet is no longer working….. and through a series of unfortunate situations, it took me six months to see a new Pediatrician, to then be referred onto a Psychiatrist, to then wait to be contacted by said Psychiatrist…. and now  months later we finally have access to this $480 an hour Psychiatrist, who thankfully has already proven himself to be worth every cent. Luckily for us, being one fairly fucked up family, we hit the threshold with Medicare months ago, so it turns out we get 80% back…. A small victory, but a victory none the less! Anyway, this incredible Psychiatrist Bill, has already taught me more in three sessions about how the body takes in and releases medications than I have learned in 7 years of seeing Pediatricians for her disability. We have her booked into the Royal Children’s Hospital next Wed at midday to have her in the operating theatre to be given the happy gas just so we can take some of her blood. Yes, that is what a child with severe anxiety has to go through just to have her blood tested. We are all hoping that once the DNA tests have been done, we will know exactly which family of medicines we can and cannot give her for life. So no more of what we’ve been through for the last fortnight of trialing new medication, and withdrawing from her tablets. Let me tell you a little of what we’ve experienced. Rubes’ anxiety hit an all time high during the last two terms of school. After parent teacher interviews we all discovered that between all of us (her two teaching aides, her teacher, the Vice principal and myself) the questions she was asking at school and at home probably clocked the thousand questions a day mark. Every piece of dust, dirt, goo, wet thing, cotton, carpet, stain on the table was surely something that would kill her. Whether it be via her hand while she ate lunch, or via her drink bottle that had sat near it, or via the air that we breathe, it would surely float up into her body somehow…. she was absolutely positively sure that it would kill her. The latest anxiety being that these things would enter her brain via her nose. Bed times have been hell because every time she lay upon her pillow or moved the doona and dust flew around it would take her another 40 minutes of questions to settle again. This part of her anxiety has never gotten to me as much as it has recently. I have been trying to teach her how to self soothe. How to use the “Catastrophe Scale” and really work out if something is as bad as she really thinks. But it’s not possible to calm yourself down when every inch of your being is telling you if you don’t ask the questions, these things will happen and you will die. She hit a peak a week ago after a week on a medicine that was great during the day, but kept her up at nights…. so after a week of no sleep she flipped her lid and became extremely irritable… to the point where rationalizing was just not something I could do with her anymore. Out of utter desperation on Sunday I gave her some tablets to chill her out, or even better, knock her out…..  and I even took the same dose as her to prove that she would be okay.  She was not. Once she felt the effects she decided that I had murdered her. She asked me why I had given her this drug that was closing her throat over and would absolutely stop her heart from beating that night? She writhed around on the bed moaning and crying and telling me what things to hand out to what friends once she was gone. She said she was glad that she’d be with Daddy again at least. I was absolutely gobsmacked. I just wanted this kid to sleep and wake up and be rational. I tried soothing her, talking it out with her, hugging her tightly……. and ultimately I cracked it at her for even thinking that anything I ever do to her is not with her best interests in mind……. but she never took it in. Three long hours later she passed out. She woke at midday the next day…. the first thing she said to me was “That was the best sleep I’ve had in years.” And so ended another shit first week of the school holidays where all other families I know are off enjoying each others time and company. We entered the second week waiting for a new medication that had to be made up at a compound pharmacist, so it wasn’t till Wednesday this week that we got our hands on it. Every day for her must have felt like a week. In the end I sent her off to Mum’s, because the cracks in my not even close to patient parenting had not just started showing but had engulfed me…. and instead of being calm and rationalizing with myself that this crappy time would pass….. I just lost my cool waiting for some medication to possibly help, or for her to miraculously stop irritating me to no end, and neither was going to happen anytime soon…… You do get to the point where you realise that there really will be no end to certain things, and this I’m afraid will be one of them. So here we are…… nearly at the end of another fabulous school holiday break, not feeling well relaxed in any way, but fucking exhausted and brain fried.  But hey, we have survived yet another crappy test from this old life of ours…… keep em’ rolling in I say! It hasn’t taken us down yet…. so I guess the odds are with us for once. Happy Grand Final weekend peoples. xxxx