angelman syndrome. my son is an Angel-man

this is not my first blog as such. i had one before. but this one is about *my* life with my son who 12 months ago yesterday was diagnosed with Angelman syndrome. a 1:20,000 genetic fuck up. (yes i will swear in this blog. stop reading now if it offends) i had DJ when i was 19, almost 20. my hubby was 30. we had no idea until he was almost 2 that something other than developmental delay was involved in our special mans world. Angelman syndrome is part of chromeasone 15, on the maternal copy jumps ship or just fails to board it. and renders the child at this point in time happy, flappy, dribbly and prone to epileptic type fits. it also leaves them unable to communicate via the large vocabulary most people use. my son in the first two years of his life had to condend with - being 11 days late. speicalcare nurery (scn) for a week due to fluid on the lungs them at 6wks failure to thrive due to poor feeding. toung tie also cut the day before. 4 days of hell and one hell of a mumma melt down and we thought itd be alright. reflux until 18 months old and some place in there my second son was born. part devil to more then make up for his brothers angelic state (i am joking but still...who'da thunk normality was HARD) just before he turned two DJ had his first epileptic fit. lets just say i called 000 sounding like a women whoes son was dead. blue and twiching tends to leave one to draw that conclustion rather quickly. this brushed off as a "one off" thing soon became not a one off when 3 weeks, the NIGHT of his 2nd birthday it happend again. his body ripped by this fit. we ended up at abigger hospital in ICU because of it. blood tests had come back between both fits and hubby (DH) and i needed bloods done. we had also baught a house in rural victoria the november before. our moving date was March 21st, a monday but on the friday before so the 19th? we got a call and where asked to sit down. our son was speical. he was an earth bound angel. angelmans isnt a death nell as such. but it is. all those little dreams and i guess normal 'mile' stones suddenly go puff into smoke. but at the timei did what any mother would do, continue to love her son(s) like nothing had changed. one crazy fucked up move later where anything that could go wrong did go wrong then get sent back for a second try happend. we moved 3 and a bit hours away. with no family support we where now faced with it all alone. but i did what i always did. drove myself head long though it. we then had a change from drop fits to cluster. which we're manageing now. hopefully. fuck it i said it now we'll have a run of them. this blog is for me to vent and celibrate my sons. the good the bad and the down right soul shattering bits. i got told long ago that to write things down may well help. and i found i cant read my own writeing and i'd like to offer a trail of what angelmansyndrome is like for me. for my little family. raising a speical needs son and a normal one together is like. plus now i have a lap top i might have a hope in hell of posting once more then in a blue moon. i guess too its also for me to unjumble my thoughts. to get my mind to calm down to...debreaf after it all. because i find myself being too strong for too long and i cant talk to DH, as he's as stressed as i am. and my family as much as i love them dont understand fully how hard it is. like right now i should be asleep. knowing i'll be up at 7.30-8am so DH can get some rest from a restlessnights aleep which comes with angelmen. they're all crappy sleepers and when peopleme about it i litterly smile and go "its genetic" which often opens up the conversation about what DJ has, and why sleep school is NOT an option. if they push it i tend to proverblly punch them in the face. i know its 12:30AM or near enough to it but my mind wont shut up. thinking about today watching devil child drive this little eletric car we baught the boys. knowing DJ wont be able to drive it hit a new home button. im getting so excited deep down about the idea that he might walk soon. but it could also be another two years before that happens. but it will happen. Another thing i thought about is how hard it'll be on Devil Child (DC) starting kindy/school. i know all to well how horrid children can be but i hope they dont pick on DC or else i dare say they'll get an ass kicking. but thats just my view. i want so much for DC to have a happy childhood. but i also want him to undersand how...speical his older brother is. and that hospitals are part of our life as is peads appts and other visitors to the house. i then flick to worring about DJ when i'm unable to care for him any longer (im almost 23, so a while togo yet) but i worry about him. fuck the idea of him going to kinder scares the crap outta me! hes my baby and the one who i almost got kicked off a peads ward over. one who i have dropped my bundle for and kicked it between some doctors goal posts. i've had some interesting ideas and theorys thrown at me about dj. about cures and 'if you knew' type ideas. but the truth is? id not change a thing. well i would. one. that the fits wherent so hard on his body or even none at all. none at all would mean his body and his mind didnt suffer. my son is mine. the universe will only throw you what you can handle, weather your ready or not is another question. sometimes the little things in this blog will be blown up and the bigger things minimised but thats how i cope. or how little sleep i've gotten or me being an honst stay at home mum whoes not worked since i was 19 due to my babies. which i dont regret at all. sometimes i'll rant and rave (with out mentioning real names might use forum jargon instead) and just let it all hang out but fuck thats what this blog/open diary is for. for the world to see that behind this messy house, this punky looking mumma that there is a human. that trys to be strong for the world around it. that there is an earth bound angel who can smile and all the simple things. a devil child testing boundarys and a DH who works hard and boofheaded dog and 20 odd chooks. this blog wont always be sunshine and lolly pops. i will at times open up about my past. about my life before kids. and about why i react to things how i do. its not going to be pritty. nor will it be if DJ has another turn. or if i relive the ones hes already had. or just one of the craptacular hospital visits that almost ended in world war 3. i cant keep glossing over things in the real world with out cracking so this blog, i hope will be my spac filler to allow me to function beyond it so i have my ranty mc vent place. because belive it or not. i'm an angel mumma. to an earth bound angel who, will always be my mirical.