And those who dont mind matter.

Dunno why but that phrase springs tomind.
Down the shops; at coles in town a stupid old batt commented on dj having two dummies. I smiled and said 'yep, its his thing.' No issue but the look of discust he had dummies was not a vailed one. Pitty I felt like being a cow ay? With ik n ear shot I commented to the lovely check out chick it shits me when people judge my son. Being disabled is one th ik ng but to be looked down on is pathetic, those who feel the need to do it. Stupid old bag. Only person in 4 months todo it and I wasnt ganna be nice.


Its been 6months and one day since the first fit. The fit that made my heart drop into my knees and cracked part of my soul. Its been 6 months of massive change. In three weeks it'll be 6months since the second fit, the icu trip, where part of my soul almost died.
Both of those fits had me on my knees. Litterly and metophoricly too. My mind begging a higher power to save my son, that his time on earth was not yet done. Pleading with dj to just breath, to not leave mummy and daddy, that I wwas not strong enough to say good bye. Screaming at my mother to 'shut the fuck up it may never be alright' in the early hours of the morning though tears that left me unable to breath. That left me hollow. Watching the sun rise, looking into the lightening sky and hearing 'lucy in the sky with dimonds' as a friend had passed away the same day as the night dj had his fit that empty feeling of a world shaken, rattled and rolled. Of a mother trying to find strength that I wasnt sure existed at that point. Im still looking for it.

And now I sit here as dj naps, vic crawls around, 300 odd km's away from where it happend, where the road took a turn that I never saw on this map of life. A hidden back road that is only dimmly lit, that I know i'll stumble and fall as I walk it. But each time i'll get back,up and dust myself off and keep walking into the darkness that is angelman syndro,e I will fight with every ounce of my being for dj. I wil learn to serive each fit, each hurdle. Each day.

one foot in front of the other. One foot at a time.

All right. its rant time.

I'm annoied.
annoied at some people on facebook. a dear friend of mine put up some *lovely* photos of her breast feeding her daughter (vics age) and her FAMILY told her to "put it away" or "take it down".
FUCK.OFF. kthxbai
no. really FUCK OFF. its her face book. its HER SPACE dont like it? stop fuckin' looking you stupid ass wiped old woman and sexualy driven young prick. yes. its a BOOB being used as intended. so get the fuck over it.

i'm also annoied at the universe it seems that DJ's "normal" for fits is up to 6 in 9 hours. yes. 6. with drugs. FUCK. its hard. seeing as im worried if we attempt a play group and i'm running after vic he'll have one and scare the shit out of some one. as him going a shade of gray, drooling and clicking would scare the shit out of any one. but me, DH and some other people who've seen it. yes. i know i'll have to deal with that. but right now its just FUCKED.
i feel shit for Vic as he gets minimal interaction with kidletts his age. why? 'cus of DJ and my fear of fits. plus me trying to run around both of them, honstly sucks dick. but i gotta do it. right? some how i will. FUCK.

Also the idea of not having any more babies kicked me in the guts two nights ago. i cried. in the woodshed. just cried. i know it sounds so utterly fucked after the last paragraph but i cant help it. i dont feel 'done' i want another. but DH has made the call. by about 80% the last of that will come after the genetic conunceling and we find out if its a freak thing or it could happen again. but i still want another baby. *head - fucking - desk* which hurts. I'm getting an IDU put in, in september. Joy. so that means at least 5 years of *hmmph* or i might just get the fuck over it. who knows (i say this as vic howls at the gate) but right now i want nother baby. i want to feel that rush of seeing those two lines. the first scan. the first movements the massove kicks, the big belly to rub. the labour pains, that bloody god damn'd "ring of fire" the first sight of the baby all goo'd up. the sleepless nights, the first's but sadly. i wont. as much as i want it i cant fucking have it.

...and the idea of a puppy..well...yes. not the same but we're looking. well i am. DH just has to agree LOL. I guess I also feel like I want a puppy so I have a compainion when things go boom. Like the other night. Dh couldnt understand how I wad so upset about no more babies. He didn't think I should be upset over it. But it was more I should be happy with what we have. Which I am. But I guess that I am but I still feel like im missing something. That hopefully will be mended by getting a pup. I know it sounds so horrid, and I guess selfishly shellow. But its all I can think of for now ya know? Plus I also want a...compainion who I can talk to and not worry about it being taken the wrong way. Iknow I have dh but sometimes he dosent want to hear whats weighing on my mind and I dont wanna post it here as its just too much ya know? Plus with dj it might help him too, as in a claming thing for us all. Im thinking about a foxie or a jackrussle...ive seen three forsale and I am soo tempted to call and see if they're still for sale...but...yeah...soo tempted. I'll talk to dh about it...wonder what he'll say...

Now i better go change the kids, dress them and go into town and do the shopping...who knows. maybe the fresh air will clear my head.

FUck i want a baby :(

Some things are just eaiser to ride out than fight...

I had the out laws here over the weekend. The anger isnt as strong as it has been. But they, mainly my father out law leave a bad taste in my mouth. Hes arrigont. He truely is. Telling me how to cook currys. Telling dh how to burn off and when ... IE not the middle of summer. The twat. I hate how he expects mil todo everything...i want to bitch slap him. Telling me how bad eating meat is. While I deal with dh's fussy tastes and aspireing vegitatianisum. Fil drilling it into me makes me wanna belt him! I love meat im not changing that. Simple.

Im also ticked as I have differing views in religion. Im not quite pagan but not christian eather. I have angel cards, tattow cards 'heart' cards. Books on witch craft (history) books on crystals (both types, useses and how to use) and a while lotta crystals, which my collection is always growing. But when the subject of religion/spiritual belifes is baught up I am told to pipe down by dh. In my own damn home as mil 'hates it' and is uneasy. Thanks for the support dh. Frankly u dont care I dont force them into doing shit all. I shoot them down when they talk of extreamests. But soon enough I wil
Be (hopefully nicely) telling them that they will need to understand that I see things differantly I always have I always will and frankly they can fuck off if they dont like it under my roof. I went to a christan school. But saw how..molded it was that you fuck up god forgives you ask, he dose. Sounds like a genie. But thats how I see it. I told mother out law i'd be getting a tatto after vic finishes feeding...the look priceless. But its not going to be some fiverless thing. It's going tibe the boys iniuals and birthdates with angel wings around dj's as hes got angel man syndrome. It sounds dumv vut I neec to feel the pain. As im trying hard not to cut. I need to replace it.

But other than that...this nut house is...kinda...ok.

Well its not too bad. We're above 4°c so thats always a plus. The fire has been going 4 days strait so the house is warm...ish. The floors in the kitchen/bathroom/4th bedroom are still freezeing though.

Bad things come in threes right?
1) djs 9 fits in 12hrs
2) our dishwasher leaking and unable to be used
3) our tree roots fucking next doors septic pipe.

The last one is bad. D was in last night for a shower. I expect his mum in tonight and maybe the old man k too. Thats if its not fixed. Hopefully it will be. Upside is we will take down a few of those shitty pine trees...i hate the ugly bastards. Plus now i've told dh they are bad spider colectors hahaha.

Its strange sitting here realiseing that although we've been here less than four months can see myself any other place. I feel at home. This is where we belong..

Sitting here I realise how fast time goes. Its not just with the boys growing up. Its everything looking at old photos. Mainly school ones. Like my high school formal ones. That was 5years ago. 5 whole years. Ive changed alot.

I guess also the realiseation i've known one of my best friends for 10 years makes me go o.0 too. I cant quite rap my head around it honestly. He's been there for me all thease years. He's like a brother to me n the person who I can talk to once in 6months and he still gets me. Which is incredable. Im so lucky to have him. I met him through an ex, when this ex bad mouthed him I bit him and drew blood. When that ex and I broke up the ex bad mouthed me G punched him in the gut. I'd smack any one in the face who put him down now.

I guess too im thinking about change. I have a bottle of hair bleech and a purple rinse sitting there. And im wondering if I change my hair again...or if I leave it. You see I do that when massive changes happen. Thus my hair went from between my sholderblade length to sholder length. Its currently a reddy brown. Im debateing going blonde again. I admit I do like playing up the ditz; from time to time only to run rings around people later. But thats not all. I guess I like the freedom of blonde. Ita easy to add colour to it. Its also a bitch to maintain.

I also want todo it as a way of copeing with vic turning one, djs fits and just finding me again. I know im a mum. But I guess I want more. I'd love to go back to work at some point. I thought of social work; perhaps in hospital or even in supporting other perants of speacial needs kids. Both 'regular' and the more rare types. Or even counceller for them. I know I need to give back to the community that is giving me so much at this point. Maybe be an ear for some one else...

So much to think about and day dream about. I might even look into tafe courses...maybe having some distance study will do the world of good for me...hmm...lets see if it happens

Vic's birthday went well. choc-ripple cake every where. made the day a blast.

every one showed up. even if DH did fight with D's mum about Mr old man next door comming - DH asked him behind her back. Oh well. they got along and we had a good time!

made me sad though. that my son is no longer a "baby" but near-er to toddler. my last baby. no more. end. bub-bye baby stage. i know i've been banging on about it but..i cant help it. maybe if i tell my self enough times it'll be REAL that i wont go though it again. i wont get to feel those first movements, those MASSIVE kicks. the sleepless nights. the labour the screaming baby...maybe i want it as BOTH my boys have been hospital babies i'll call them. i didn't take them home when i went. i didnt get that bonding time in hospital with them. i guess i want that part to go "right"
selfish i know. but maybe thats it.

Dj has been good over the weekend. no fits. seems to have settled into his new meds really well. which is a massive plus. i know i feel a little more 'at ease' about the whole thing - but im still dreading the next round of fits. as they sadly will happen.

with in me i've been flat.
well cranky.
you see bloody a/f wont fucking show up. i had two 21-on-the-dot-day cycles. now i'm upto week 4. BLAG and no i'm not UTD...i've tested once a freaking week. man she's an evil witch when she's wants to be. right? i want to start the mini pill so i can have some kind of "normaility" or at least half an idea when she'll rock up. as this isn't cutting the mustard with me. at all. stupid body. FAIL much?

now i just gotta pull my happy socks back up, un tie the knot in my knickers and get on with it. and hope a/f shows her self soon. then maybe we can talk, work it out and arrange a time of the month for her to arrive so save myself from going freaking batty!

i was sitting in SCN with vic, in his open "plastic bucket" dealing with a second time around trip in there. i was missing DJ, feeling VERY freaking sore (hello 9lb6.5oz baby coming OUT of my vagina at much too fast a rate) and trying to express into a little cup for vic.

6 months ago DH and I had bought our slice of hevean and where excitedly telling people about the up comming move and 'starting' to find out what was 'wrong' with DJ.

3 months ago we moved, having faced two massive seasures from DJ, one trip to ICU and the fucking move that was more fucked then...a something that gets fucked all the time.

and now. now i sit here.

The mummy to an Angelman child. the mummy to a "normal" child. a human who seems to attracted the rougher roads to walk. a woman whoes body failed. yep there i said it. Angelman is a maternal copy issue...FAIL. Vic was born 'sick'...again FAIL for my body. seeing a pattern here? good. 'cus i fucking well cant.
I wish my body would fail me. and not my kids.

I saw a GP wednesday. she booked me in with a gyno for september. to have the IUD put in thank christ for that. but until then take the mini pill. which is fine. she was shocked at the locoms comment about me birthing DJ at 19 being "too young" she was also shocked she commented on the age gap between me and DH. the cow she was (PMS any one?)
i've also been chucked on the 'wait list' for counceling too. so thats about 2-3 weeks away.

its taken me almost a week to post as DJ thought it'd be a smashing idea to have 9 seasures in just over 12 hours. i got to the point of "i cant do this at home" as the fits seems to be getting closer and closer together - with more sleep between them. id given all the drugs i could give. so 000 was called and DH went with DJ in the ambulance and i followed half an hour later with vic for a "changeing of gards" as DH is working so my folks drove from melb to look after vic. he had one more fit over night and that was it. so now he's on the max dose of keppra for his age/weight and the minum for his age/weight of eppilum who ever thought BRIGHT RED for that drug was nuts. its hard to get out of clothes! oh well. better that then i fit - right?

this weekend we have vic's first birthday. its scary as all fuck my baby is 1. and near to walking.

now i better go make this choc-ripple cake for him as it needs 24hrs to set ect!