So we have more question marks then answers right now when it comes to DJ.

We saw the Pead yeterday. gotta love him. we walk into his room and he looks me in the eye and says "well you've had a shit of a time haven't you" i told him "umm that'd be the child friendly explenation of it"

we got down to the nitty gitty. went over the fits what happend what they did/didn't do what was to come. ruled out a lumber puncure (happy dance time. i dont want a needle in my sons spine if i can help it) but a second attempt at an MRI in two weeks (ish) time. then we got to the blood test results. the last of them. the genetic one.
and we has a winner. DJ is missing a chromosome. q11.2-q13.1 to be exact. meaning? well according to the letter i have sitting in front of me (to give me the figers above) it means DJ will always be DJ. we can't re-grow missing bits but we can work with them.

It says something about Parder-willi or angelman syndromes but we cant stick that label on until DH and I have bloods done. which is fine. 'cept the fact DH hates them. me? i'm used to them.

the pead exected more of a 'reaction' to the news. i shrugged my sholders and told him the truth. DJ is a happy kid. he smiles, he laughs he (in his own way) interects with me, DH and vic. i cannot as a mother ask for more. a happy child. this just means we have more of a defined plan of attack. simplistic i know. but right now thats the level i'm working on. the here and now.
I've googled both the labels but i'm not willing to guess, nor look past more then wiki for an understnanding. in time we'll know and i'll read read read all i can to understand. but for now i just gotta love my son and help him grow.

In time i may start a blog for this. seeing as the whole minus chromosome 15 thing has only really been 'around' or known about for 2.5 years. so growing with it, well is a wee bit unknown. maybe if some one else finds their child with this they'll be able to read about it. learn and see what its like. but we'll see.

once i have my head fully around whats happend then i'll express it. but for now i just plod along. one day at a time one night at a time. and hope that Dj stays happy. as what more can a mother ask for?

the idea. the consent. but it comes at a price, so it seems.

I found peace over the weekend with all things todo with the OL's.
I took the boys for a quick walk to see if i'd fixed the dodgey wheels on the pram. nope. had to remove one stamp on it (yep, thats tecnical aint it?) and my BOL was walking his dogs. he stops he talks. i talk back. then ask him something MIL should have told him. he takes offence talks down to me like i'm a child. he walks off. wont face me like an adult. so i turn into a child. call DH tell him then call MIL and explain, something BOL would do. run to Mummy Inlaw. why the hell not?
BOL makes a mistake this time. he calls DH to have a shot at him. opps. i'm on the phone to MIL, not like that changes the damn out come but hell i feel so much freaking better about it. he'd called to ask DH why he'd put me up to 'the attack' when DH told him i have a mind and voice of my own he scoffed at DH and told him "yeah right" clearly the man has no idea of my abilitys as a grown women to stand up for my family. let along conduct myself in a mannar that is above him and beyond that of his wife. meaning - i told him to leave MIL out of message passing to communicate with DH, removing the show pony side and he didn't like it. at all. no crowd to please. oh well. i said my peace

i see MIL and FIL 48hrs later. all seems to have been 'smoothed over'
clearly i was wrong.
i see FIL the next day (three days after the 'event') he tells me that i should have kept my mouth shut. that things where going 'fine' (bwahah no, sorry FIL they where NOT fucking fine) i explain calmly - as i did to BIL i asked he communicate with DH should anything happen to DJ again. that i needed to speak. it was in the street, not in some ones house. one on one. eye to eye no 'back up' but clearly that matters not. FIL told me BIL isn't alot of things. a card person. is one. and not putting mine and DH's name in a card is 'just like him' spirits above did it take alot of strength to not tell FIL that BOL is a prat and i dented his ego and he cannot handle women who can talk on their own with out a mans support. that peace MIL and FIL though they had was distrupted. mine had just settled. but mine remains. theirs may take longer. peace. something i have not had fully for 4 years.

I now feel something else along with my much longed for peace. pride. i can pride myself in knowing i stood up for my family, my view with out turning into a screaming banchee. i know that i have done NO wrong in the latest 'event' i looked BOL in the eyes. yes i got emotive when i said my son was ventilated and in ICU, i am his mother so allow me that. BOL seemed angry. the phrase he used before he walked off was "you need to think before you speak" if only he could understand how much i had thought, over and over about what i was going to say. if he knew the thoughts i had indeed had over the last month. twice having my son drugged to the eyeballs, twice seeing my son not in control of his body. twice unable to know where his soul was. twice facing the possabilty of death. maybe he is the one who needs to think before he acts. but i'd not speak to him as if he was a child. because i'm not the parent.

Peace is what my MIL and FIL want. and peace is what i have given them for years. at the cost of my peace. but last friday night. i gave them turbulance for the price of my own peace. a price worth paying i feel. as BOL and SOL may never have that. they will in other places but the relationship with DH and I will never be one of peace. at least from them. they hold grudges they do not hide their dislike for me - well they hide it from MIL and FIL. but i'm not overly worried. my peace comes first. as does my happiness and that of DH and the boys.

I paid a price of my peace, but every moment of peace is worth it.

well thats how i see it.

last night i took the boys for a walk. as i have been trying to do at least once a day. last night i happend to see my BOL driving towards me. i 'zone out' at this point and just ignore. mature of me i know. but if i didn't well the little bubble of anger would have floated to the top and burst.

it floated to the top later when i went to the shops with the boys and saw him driving away from the shops. a whole heap of questions came into my head. most of which the responce i got made me even more pissed off.

this will be a selfish post. but hey. im sure no one reads so i'm all good.

in the last 4 weeks DJ has had two fits. one we ended up in ICU at a big hospital. now two days before the last fit my BOL called us to thank us for the gift we bough DN, nice i know but i can't help but feel it was "staged" so as MIL and FIL would 'see' him call. even my mum who picked up the phone gave me 'that' look of "am i talking to who i think i'm talking to?" yep so he got his ear chewed by me about DJ and the crap we had been though two weeks before. i did lay it on think that we thought DJ had died when DH woke to him blue and fitting. thus you would think going though any other humans brain would be "SHIT thats massive" clearly it happend but it was fleeting. very fleeting. but it did infact point out BOL has our HOME phone number. that was sunday the 6th of feb. by late tuesday 8th of feb we had DJ fitting again. this time the verosity of it was harder. alot harder. to have your sons head smashing into your hand mid-fit while you try and guide it to the flood is hard. while your DH is on the phone talking 000 though it. when you realise you want to video it for later referance. i know i'm crazy doing it but its payed off already. then having you see your baby with a breathing tube in, drugged up to and beyond his eye balls is harder still. i dont know how DH did it. you would THINK BOL would call to see how HIS BROTHER is? no, could not ask that of him could we? i sware if it happens again i'll mis dial the number and wake them up and calmly explain DJ has had another fit (which i honstly pray wont happen, my strength is weakening now) i find myself getting angry at SOL and BOL. i have gone though hell as has DH. DH spent5 nights - one in er/icu and 4 days in hospital. we both thought at one point or another our son was gone. calling MIL and FIL as well as mine this time i was calm and asked that they stay home. mind you FIL never offered. MIL called back to do so. i was clam. i to a point still am 'calm' for that bubble of anger is rather good at holding its self together granted how much pressure i am putting on it to explode.

i have told DH if i run into BOL and SOL and they have the balls to ask how DJ is i will be honest and obvious as bull dog balls on a winters day. i have already planned out what i will say if i am (un)lucky enough to see them and they ask. my responce?
"why the fuck do you care now? its over its done and we made it though. you have our home phone number but no call, no text. nothing. yep you have a new baby. been there done that TWICE. both times a rough as guts start. yet now you try and care. you (both?) seem to think that its alright to be like this to my face but we all know, and i now will not hide the fact you (both?) do not like me. you never have never will. there for you do NOT like my children as they came out of my vagina. oh and if you want to be an uncle (or aunt) act like a bother (or a supportive family member) not some two faced coward who wont even see if his (your) brother(inlaw) is ok. i cannot understand this. you say it would be taken the wrong way well it cant be. all i have taken is your abilty(s) to be show dogs. you're not proud enough to be a horse you show off to MIL and FIL but dont give a flying fuck about my kids after the shows all done. so PLEASE stop. if it happens again and you care show it. 'cus right now you're colder then the deepest ice in the south pole. and if you tell us you're tired get 2hours sleep for 8 days. or stay yup for over 24hours 4 times in three weeks. THEN GET THE FUCK back to me about it."

or something to that affect. yes, this anger should not be weighing in on my mind right now but it is. i battle for my boys. i have told the people in the ER three times if DJ needed blood to take mine. from my vein to his. no if's no buts just do it. my son is my life blood there for he can take as much of mine as he needs.

I wish BOL and SOL had called while it was all happening. off their own batt. what makes it 10X harder is that if they went though this i'd be getting 'the lean' from MIL about talking to them. we agreed after the last fight about MIL being the go-between she'd no longer do it. but she passed onto me BOL and SOL hope they DJ would be ok, nice of them i'm sure. but it could have been said by them to me or DH. be it phone or text.

clearly BOL is a show dog on a tight lead held by SOL. i wonder how much longer that lead will choke our BOL's family for. i know i've already had enough. my kids come first. DN comes a close second. but BOL and SOL are off my raidar. i have better things to aim my anger at. until i see them again. in the street then my lazer beam well...its work will be swift and leave them shocked. 5 years i've kept quiet. now, now its my turn to bitch and whinge and have a tanty. only fair its to their face though right?

i've had my three.

One - DJ has a fit ends up in ER discharged the next day
Two- DJ has another fit. ends up with a breathing tube drugged above and beyond the eyeballs ICU then tranfured to peads (at a bigger better hospital) for 4 days.
THREE- get discharged from said bigger hosptial only to come down with CROUP so off to ER at smaller hospital due to stridor (noise when breathing) we get sent into be watched. Dr red (No fucking idea what he name was but he had a red shirt on) comes in. yep, croup. ok 'roids it is. give him some. i walk out to move the car at this point. i walk back in to see him with a mask on. i litterly say "what the fuck happend?" my bad. being up 18hours will remove what little abiltiy my brain has to engage befor i speak gone. nope dif. type of 'roids. brathing is better. i see DJ's file rock up and in an attempt to crack a joke (yep. still do it) i say "thats my boys file, and inch thick and growing" Dr red said "almost as thick as him" hmm...lucky it was 18hrs awake not the 22 at the end. Dr red starts talking about tranfur to the bigger hospitals ICU due to croup, triggering a fight between DH and I about as he "cant take any more" yep. i got angry and told him i'd go and he could give Vic forumular even though it would brake my heart after all *i* went though to breast feed vic. then it becomes bigger hospital in the city. due to croup. DJ at this point is looking alot better then the pead Drs from ER come and check DJ out. seem happy enough granted what has happend in the 5 days before. we can go. WRONG WRONG Mc FUCKING WRONG. Dr red has been over ridden. oh see that? its a polictal struggle i smell? yep it was. the nurse says to one "yep they can go its a big fat yes" another goes "its a big fat no" the first goes "they're not even on the screen any more" the second nurse says "well they should be Dr red has said they're staying" off to an obs room for us. noice NOT DH lays down with DJ in the bed. DJ goes to sleep DJ nodds off too. i'm wide awake. at round 3am i go get me an up and go and a milo bar. chololate fixes everything. at around 5.30 am the nurse whoes been watching DJ talks to Dr red. he then puts the bed on a 90º angle. why? to wake DJ and make him cough. well the mumma bitch in me comes out. i pick DJ up and lay him in my arms he sleeps again. the Dr comes in and i smile at him. sorry but FUCK YOU sun shine. you're not getting your way. i'm not your average mumma i'm a bitch when i need to be. he walks out. i say to DH and the lovely (older) couple next to us i'm feeling prickly. no bones about it 21 hours awake makes me a tad cranky. another Dr comes in lets call him Dr blue as he was in a blue shirt. he comes in and talks to us about DJ and the last 4 days. he asks a question that was the spark that my fumeing anger needed "are you happy with this?"
his mistake my run way.
i reply?
"honstly? i'm fucking pissed off. my son and hubby have been in hospital for 4 days. neather of them have gotten much sleep. my son has had two fits in 3 weeks, we have just started on meds to stop them my son has croup yes we know that. but isn't the best healer sleep? how the fuck is my boy ment to fucking sleep in a hospital where he is exposed to MORE FUCKING GERMS? sorry but no. i'm not happy i'm pissed off"

the look on his face? priceless. he went and talked to Dr red. Dr red comes in and talks to us. and tells us we can go. heres a 30ml bottle of 'roids ...we only need 2ml out of it stupid twat.

we get home just after 7.30am. 23.5 hours of awake time. and i'm screwed. DH sleeps boys sleep i'm wide awake. i crash around 9am. then i'm up at 12. feed the boys, they sleep again. by 2pm i go down the shops i'm far too awake. what fixs that? booze i buy a bottle of balies that knocks me out. so a glass of that i and i got another 2 hours sleep.

so thats the three bad things. bring on the good...right?

i sit here at 12:48am facing the same as i did three and a bit weeks ago.

Dj had a fit. thank god (again) DH was co-sleeping we caught the start. dial 000, no panic just the facts (mind is racing too fast at this point to care) pass the phone to DH. go out and inhale the cold night air. come back inside. breath again. see the fit is stronger. put hand under DJ's head. stop him hitting the floor too hard. he's making clicking sounds. mucle spazums seem harder. hmm more drool, semi foamed up. i just keep my hand on his chest - feeling his heart race. tell him over and over again i love him. what more can mummy do? nothing. i start begging the world to be kind to my son. ambos arrive. one is the same as last time. wouldn't have hada clue. but some kind of comfort can be drawn from that.

to be continued

so far 2011 has been honestly the shit-est most heart brakin soul shattering year that i can remember.

january - a BB girl lost her sister only to pass on her self 10 days later. another BB girl lost her DH. Dj had a scary ass fit that almost broke me into sand sized granuals.

feb- a dear friend of mine has birthed an angel into this world. i dont type this on BB as i dont know if she wants people to know. i dont type her name for the same reason. my heart is breaking for her and her family. its bullshit and its WRONG beyond words. i want to kick and scream and make it not so. i want to go there and hold her and make it all better but i cant fucking do that. i cant ease the pain i cant make it go away. its CRAP. its always the good people who suffer. ALWAYS. i wish i could scream and kick something to make it better. i wish that this women didn't feel the pain of empty arms. most of all i want her dream of having this baby come true.

FUCK FUCK FUCK.

and to top it off tomorrow they're attemoting an MRI on DJ. again if this fails then we go to the bigger hospital in june.

FUCK YOU 2011. you fucking suck.

i was grumpy and over due with DJ. it was stinking freaking hot and i knew i was facing an induction.
31 hours of labour and hour and 20mins of pushing and DJ was earth side. then the rollercoster that is life started. up down side to side and finely a flip at the end. and then repeat.

i talked to my MIL about SOL and her birth. 10hours of labour and an assisted delivery. i was blunt to MIL and said "well thats what you get for being shoved on your back" i dont honstly care if it offended her. she had the balls to tell me DN was "healthy as can be for now" sorry, i aint feeling fluffy. rather prickly insted.
SOL is Breastfeeding. which im glad about. how ever if i was to be the bitch that i am feelin' like i am right now if she left the room to feed i could well go into the same room todo so as well. but MEH if she left the room i'd flop it out and feed then and there! screw BOL. he looked when i was trying to feed DJ!

In other news we're having a bash for DJ's 2nd and our buggering off up north. so i better go make that choc-ripple cake or else i'll be in strife!

the whole SOL is better then me because she just IS.

talking to MIL about the birth of SOL and BOL's baby made me a) clucky well rather bringing up the cluckyness and b) angry.

SOL isn't a big women. i saw her walking about two weeks ago and looked 'normal' for a women due to give birth in three weeks. at that stage i had people asking me how far OVER i was. at that stage with vic my maternity tops waved the white flag, as did the jeans and i had a belly hanging out the middle. she also said the little boy was "healthy as can be. for now" thanks MIL like i needed some one to remind me my boys where ill not long after birth? i've walked the rougher road and i do NOT need people pointing it out to me. i know SOL would have laboured maybe a day? i did 31 hours we told people at 26 hours as i was in hospital. vic we told MIL and FIL as they where comming to watch DJ. if we have another baby i'll birth at home or bring the kids with me. screw it.

i bought SOL and BOL a small gift and a card for their son. (how about we call him DN?) more then they have done for eather of my boys when they where born. i struggle to wrap my head around the card they gave us for vic. and thinking about it they didn't give us one for DJ's 1st birthday. lazy people. DN will (if its not thrown out) a card from DH, myself and the boys with a hand written part "welcome to the world DN, may the sun always shine on your back" from us. something they didn't do. but thats not the point. they are *ment* to be an aunt and uncle to my kids i have friends who have rallyed around us in times of need. they have hit the road instead.

I'm hoping very much next time i see the MCHN i wont see her. i can't be bothered really. i've told BOTH the MCHN's about them and their inability to give a shit about my kids. i dont care if they "oh they're lovely people" i know better they're NOT and never will be when it comes to MY kids. as they are just that MINE. they do not like me thus my kids are second class.

MIL bought up seeing them before we move. which i'll do if they arrange it (and THEY being BOL and SOL) i doubt i would step foot in their house as i have worries about a FULL HOUSE thats been tiled from end to end. when DJ can't walk and vic trying to crawl. (its also on a slab too) but if it was at MIL and FIL's place i'd be fine. knowing i can walk out and "settle" Vic when needed or go for a walk to cool off.

I wish things where different between us. i really do. but i cant change the past and i'm too tired to change tomorrow. i have been kicked while i'm down by those two and i will no longer let this sleeping dog lie, i need to get it out so the next part of this may be alittle more dsoihsdkhfhdsfkjhsdk esk then i need it to be.

i dont understand how BOL could NOT text DH when DJ had the fit. i dont understand it. my sister - who found out via FB called me at midnight and asked if i needed her there. she lives over an hour way. BOL who lives AROUND THE FREAKING CORNER couldn't text DH to see if he was ok. MIL tried to play the "but you may have taken it the wrong way card" FUCK OFF how in the name of hell could we do that? consern for a child who has had a massive fit taken the wrong way? impossable. if its baught up if we see them i'll be blunt and say "we almost lost our son and you couldn't even text. thanks a whole lot for that. i pray you never stand where DH and I stood. holding your limp and almost blue child, but if you wanna see the whole biatch in me, you're going about it the right fucking way ass holes" i have kept quiet for years about it. but now its MY KIDS invloved. i will fight tooth and nail. i will NOT allow those two to be "aunt and uncle" by name, they have done NOTHING to deserve the respect that comes with that title. i have friends who have done more to be an aunt or an uncle. not them. i dont expect and i almost know i wont be 'auntie' Dansta or DH as Uncle DH. but i dont mind. it is my DN, but they may never know me as their aunt. i will most likely (aginst the the wishes of DH) send a card at birthdays and Christmas. to which i doubt i'll get nothing back. i doubt that even with the gift i've given NOW i'll get a thank-you. and i know DH did thank them for their half arsed card they gave us for vic.

And if we do see them. i am feeding in front of her and if i get told off i'll loudly explain one thing

"SHE HAS HAD HER VAGINA OUT IN FRONT OF PEOPLE A BOOB IS NOTHING NEXT TO THAT"

but thats just me and i'm cranking 'cus i have to freaking wait to have another baby.

of wanting another.

SOL birthed a baby boy last night. i'm glad the entrance into this world was a safe and smooth one. may the sun shine on his back, now and always.

but feelings of wanting another will not leave. i know that now is not the right time. that its too soon. with all thats happening with DJ. but that part of me is just...wanting a baby. another i honstly feel will "compleat" our family.

to the point i have told DH that in the new house we cant remove the shower curton in the 2nd bath room until we know 110% we will not have another. as my labour may well be as quick, if not quicker then Vics and i need a place to birth. i know that its all "out there" and full of what if's and "but i want"s but i cant help it. i need to get it out. i want to tell DH we are having another but to say that when he swings between "maybe" and "NO" is hard. its hard to explain the feeling. i feel like i can manage 3. maybe not 3 under three, but i can do it.

hopefully this year i'll spend some more time working on 'me' as such. both the phyical and the spiritual sides of me. something i haven't done in a while. hopefully the teary i just had listening to "the song" for DJ will help that along. i know a baby isn't 'right' for us right now...but...this part of me...just...wont let go. gah. i wish i could swich off that part of my brain for a few years. -.-

yep. he's good at that. (although sound asleep now!) yesterday they attempted a sedation for DJ to have an MRI...

EPIC FAIL!

one dose of sedative - 20mins later *almost* out to it. attempt to put him in bed. BANG wide awake.
Top up of sedative - makes DJ a drunken toddler who cannot crawl strait. which i admit i laughed at him for. (mean i know)

so in a week or so we try again. not sure how it'll go. if it fails again - then we wait until june for one under GA at the RCH.

...plus this sunday is DJ's birthday...45 odd invited....i'm going to have to make one huge ass choc-ripple cake. i wonder if 6 packets of biccies is enough? and i think i'll need about 2 lt of cream! man if this don't fatten DJ up i have No fucking idea what will!