we duck and miss it or catch it.

we caught one today.

i got a phone call from the hospital that DJ was admited to after the fit. they want us there at 12 noon (why do i have that western gun battle music play in my head when that sentace is read?) for the MRI at 2pm.

as do I so it seems.

after my last blog. DH, DJ and I (and vic tagging along later) went though what can only be summerised into one word. Hell.

on saterday the 16th of this month. i found out that a good women i knew solely though BB had passed away. suddenly. leaving behind three children. part of my world kind of had a massive dust cloud go "poof" in it. i'd not lost a friend before. let alone some one i'd never known. strange the connection one can form over the interwebs.

about three hours later (around 11pm) DH was asleep with DJ in the lounge. which is normal for a saterday night. both on the floor in font of the TV under the cooling of the fan from the air-con. (not on though.) and i was on the computer checking BB to find out what happend to the women who had passed. then DH calls out. saying DJ wasn't "normal" i bolt out and see DJ on the floor, convolseing for lack of a better word, and a blue/gray colour. i though he was dead. i scream and touch him. he's breathing his eyes are open but he's not 'with it' so i scrable to the phone - thank god we have two cordless phones and one of them being in the lounge room. i call 000 and scream for the abos. repeat another three times. they ask the address, then ask me if its off XYZ street. i scream back "fucking look it up on your GPS. YES it is" then hand ball the phone to DH. i start paceing. begging this universe not to take my baby boy. not now. he's not done on this earth. he has so much happiness to give the world. with out him darkness. i go out to wait for the ambos. i call my folks. they get a call at 11:40pm "DJ, Fit. hospital. going. come" again repeat then hang up. i have never felt so utterly alone or helpless.I update face book proclaming that 2011 can be fucked up the ass hard..i needed to lash out at something anything..to say the words aloud would have been enough..but i wanted support. for the first time i demanded it. i again beg this universe not to take my son. not now. darkness with out him. the ambos arrive. i talk to them take them to him. he's still fitting. same as he has been for the past 10mins (at lest) i cry more. at some point i'd gone into get vic. i cant' remember that part. i just remember his hair being wet from the tears. into the abulance he goes. still fitting. they take his blood sugar level. he dosen't even react. they're fine. i get his blue book (why the fuck did i think of that?) and pass it to the ambos. DH gets into the font and i start telling him over and over "dont you fucking leave our baby boy. they have to kick you outta the room before you'll leave him DONT LET HIM BE ALONE" he shuts the door and i walk to the font step and sit down and watch them drive off. my baby boy in the back. my heart was braking. i thought my son wasn't going to make it. the women who lives next door comes up and asks if i'm ok. i just brake down. her DH had woken her up and told her to come see what was happening - he saw the bright light from the ambulace. i just cried. begging again not to let my son go.

soon after my folks arrive. my mother tells me "he'll be ok. he's safe" and i pushed her away and said "dont fucking tell me that. dont you dare. what if he's not. let me be pissed off and angry and afraid. dont tell me its ok 'cus its damn well not. its fucked up" i go on BB and ask for help. i need something anything to pass the time. the women on there offered support that i didn't know existed. i talked to one on FB, she asked how i was going. which i have only just thanked her for.

3am rolled around and DH told me that DJ was in the ER still. but would be admited over night. all up the fit lasted around half an hour. my dad drove me to the hospital.mum staied to watch vic. i get to the ER with a chiller bag full of clothes, food and drink for DH and toys for DJ. he told me they may end up being moved to another hospital. but in the end they didn't. DJ was drugged up to the eyeballs and fairly restless. an IV in each arm. the poor kid. but i was so glad to see him. to hold him. warm. full of life. and fighting sleep. as allways.
i held him. DH held him. they removed the bords from under his arms. making him happier.

5am rolls around and we're off to the peads ward. one that hold so much anger and pain for me. last time DJ was there i was ignored as a mother. this time dispite the fact i'd been up for over 18 hours strait i was collected. i talked to the nurse. filled in paper work. she asked about how DJ sleeps. i said with a pillow and often co-sleeps. that sent up a red flag for her, she started on about SIDS and i smiled - though gritted teeth and nicely pointed out that had DJ been "in his cot" then who knows the out come. his co-sleeping with DH as far as i could see saved my sons life. she tried to open her mouth agian and i said nicely "sorry, but the fact of the matter is Co-sleeping, safely saves lifes. yes we can't do it in hospital. but it damn well saved my son and you can't aruge that can you" she backed off. i'm a bitch when tired. DJ finely went to sleep when they put him in the cot. DH also went to sleep. and i went home.

6am i'm home with vic. i put on the radio and watch the remains of the sun rise. lucy in the sky with diamonds plays. and it dawns on me that it's the first sunrise with out her on this earth side plain. its the first sun rise that i have a new scar. and a few fear. its a new day. the world hadn't stopped turning as i thought it did while in hospital. it just kept on going.
at about 6:30 i went to bed. i took vic with me. and i set the alarm for 7:45am. i was out of bed by 8. in the hospital about ten past nine. talked to the pead - who i see for Vic. we now wait and see for the next 6 months. it happens again its onto anti-serure meds. if not then tis a "yeah, well it happend" we have an MRI booked for june and until then we just shuffle along.

off into the grate unknown. but we'll get there. we dont really have a choice in it.

i'm not sure what else to call it.

the past friday, saterday and sunday have been rather...crapatular. to put it nicely.

friday i delt with two unsettled babies. so was on a short tether all day. nothing differant there. other then waiting for blood test resaults for DJ. which never came.

saterday - day was crap. a wonderful women whom i never did meet face to face passed into the next world. leaving behind alot of shocked and sad women. as well as three kids, and a family. only 9 days after fewelling her sister into the world she entered. i was in shock and just unable to understand how it could happen. the women was one who had so much more to give. and will always be remembered for her spirit and ability to make things clearer. also her ability to make her life sound so freaking cool on her blog, her ability to make all the 'normal things' really cool was brilliant. so i spent a few hours texting a good friend of mine on and off as we both knew her from BB. i had half a drink for her. i never did get to finish it off.

saterday - night- went from bad to down right scary. 10:30pm DH goes to sleep with DJ in our lounge. on the floor. nothing un-normal there. until just after 11 DH calls out saying something wasn't right. DJ was fitting. he was blue and shaking. panic set in and i screamed. DH scooped him up and tried to wake him. i raced to the phone and called 000. we put him on the floor and made sure he was breathing and DH staied with him. i went out and waited for the ambos. i thought i'd lost DJ. i honestly thought he'd gone. in my haze i called my mum and dad to come over. all they got was "DJ. fit. hospital. NOW" and i hung up. i posted something along the lines of "FUCK YOU 2011 FUCK YOU HARD CORE" on FB. what else does one say at that point? i needed to scream but at at 11pm at night its not a bright idea i guess.

the ambos arrive and i just show them where DJ is. he's still fitting. i walk out and just pace. now i know how a man feels with his other half in labour. they did things and next thing DH carrys him out to the ambulance. i just stand there and watch. he's still fitting and i feel like im not inside myself anymore. my baby boy is laying there. they prick his finger to check blood sugar levels. he dosen't react at all. my heart sinks down around my knees at this point and i start begging a higher power not to take my baby boy. my minni man from this earth. this earth needs more happy souls. then i think of his blue blook. i get the car keys and get it. why? No fucking idea. i just needed them to have it. the ambos tell DH its time to leave. i tell DH over and over not to let him out of his site once at the hospital (he was in the font of the car) that the only time he can leave is if they kick him out. until that point he is NOT to leave him. i sat on the step and watched them drive off. i just cried. the lovely women from next door came over and sat with me until my folks arrived. i went onto the internet and posted. anything to keep my mind going. as i felt my soul failing. i hear nothing from DH until after 1:30am. wanting to know the pin to my mobile we swapped as mine had more battery life in it. DJ was stable and still in ER. i waited until just after 3am togo in. Vic had been fed and i'd been able to draw strength from the Village known as BB. i walked into the ER and saw him and heard him cry. i wanted to cry but i knew if i started it wouldn't stop. i scooped DJ and Held him tight. i kissed him and inhaled him. that cry was almost as sweet as the first one he made when he was born. my baby was alive. a cranky pants but alive. i was so utterly thankful at that point. they slowly un-hooked the things that go "ping" which made me feel alot better. just after 5 am we got moved to the peads ward. they did the checks on DJ and he was almost asleep. so DH took him to the "roll cage" aka metal cot. and settled him. i explained what happend. and filled in paper work. i explained about the fit and DJ co-sleeping. she told me "oh but SIDS" and i could have ripped her a new one but insted i nicely said "co-sleeping saved my son. sleeping alone would have killed him" she wasn't sure *how* to explain that one away. i left the hospital just after 6am. i went to sleep at 7:45am only to wake at 8:10am and head off again. DJ was given the all clear as such. and EEG to follow up and an MRI. so off we go. leaving the hospital at 1:30pm. albe it alot more fragile then ever before. DJ has picked up alot since then...but it will be a case of watching him like a hawk as the chance of him having another fit in the next 6 months is very high. i hope it never happens again. i dont want to feel like i've lost my son again.
...and i sware if this child wants to out do himself for his third birthday...i'll go gray (born with pnumonia, toung tie. 12 months chicken pox 2 years a fit)

the reality of what is comming in regards to DJ is slowly sinking in. tomorrow it all 'starts' as DH and I will be taking him for a blood test. i'm not sure how they'll get him to relax. he's a wiggle worm at the best of times. so i fear and to a point know that i'll be the one 'holding him down' for it. i guess that part comes with the "mummy" tag. DH will be with me. but that wont make it easier. mainly me knowing it'll brake DH's heart if DJ gets up set (which im assumeing he will at being restrained) it will brake my heart but i've learned with vic to just shut it all off and down. let it affect me later.

so for the time being this blog may become my 'safe space' as i know one of us - out of DH and I needs to remain strong and composed. and that will be me. mummy has to be the strong one. the one who takes each blow better then the last and fights the hardest and the longest.

now to find solice in knowing that thease up comming tests mean things will improve for DJ and hopefully lead him to a happy life.

i haven't blogged in a veeeery long time. but we've had a shit load happening. and i dare say it's only ganna get worse.

late November DH and I buy a house. with out selling our current one. we sell ours in a week. the move is on.

we're moving over 200km away to north east vic. bright idea well we think so. but more stress about that later.

now this may end up long, rambley and stuff.

Dj is "slow" this time last year we had a shit fight with my folks about it. saw a pead. MRI was 'ordered' but we turned it down (yep but ya'll are screaming WHY OH FRIGGIN WHY!?) we turned it down due to the lack of communication on the parts of those wearing the white coats. to walk out of an office with "hes just slow" only to have a letter arrive 10 days later saying "oh btw, we want to do an MRI kthbai" kind of made things hard. when i questioned the doc we'd been handed over to (farked if i know the right term) would not or could not tell me WHY or what the whole MRI was for. i'd have settled for anything not just "ask the pead" which we did. and again was stone walled by him also. i was 19wks UTD at the time and rather hormonal. what not to do to me at that point. but DH also backed me up on that one. our baby, DJ was slow. we wanted 6 months to see if he perked up. but he did a tad. but nothing like we'd hoped. so we book another pead appt. with the pead who saw him in SCN, so knew what we'd been though. although lucky enough to dodge the Dansta bullet that let fly when they fucked me around with the whole failure to thrive. but any whoooo he knew i wanted to be told WHY and even "what if". so we go in and tells me DJ is slow. no ifs buts or maybes. he's delayed. gobal delay is the tag bestowed on DJ. then we get into the nitty gritty of it all. we start with a blood test form thing. well there is about 10 or more things listed in it. so i'm thinking it'll mean a WHOLE lotta blood from DJ. how the hell am i ment to deal with that? its not helped by the fact he's a 'stiff' little man. another question. another blood test thingy added. we talk about his lack of focus and ballance. we talk about how he's not talking nor pointing. but i still know what he means (which the pead said we need to 'formalise so others know too' ) so thats fine. DH and I ask questions about it. then comes up to the part DH and I knew was comming. MRI. yes we will go though with it this time. but i ask one question - what are we looking for/at the pead said one of 47 differant things. and DJ could have number 48 and leave us all scraching our heads. but the pead thinks it could be neurological migration disorder or something like that. so the MRI will check that out. i'm not going near google (other then for spelling) as i honestly dont think i'm ready to 'read up' on it yet.

Last night i'd have cried writeing this. but today. i cant. DJ is needing help and he needs his mummy to be strong. and in time i will read up on it and find out what it is. if it is infact that. because i dont want to freak myself out about it. i'll do what i've done for the past two years be a good mum. or try to be. and be strong. for DJ for DH. and for myself. i know that things are never 'easy' nor are they strait forward in my little world and its not often i put it out there that i'm freaking out. that part of me is FAR from ok with this. i admit i had no dream of seeing DJ win 100m sprint nor become some one who is a book worm. the only dream i had was for him to be happy. and now i wonder if they will ever come true for him. will he be happy? will he be depentant on DH and I more then most kids are? will he need heaps and heaps of help as an adult? will he 'grow up' as most people do? but the one resounding question is, will he be happy?

things in life are there to teach us and allow us to grow. this path that we are starting to walk down may not be smooth and well trodden. but we will get there. we have no choice. I have no choice. my son needs me as his mother. and i need to be strong for him.

even the longest journey starts with a single step