I get up this morning after my "only once a month" *sleep in* {you know those sleep in's, that are really just seen as "awesome, Mums in one spot, lets hassle the crap out of her" aka teddy in face, snot wiped on tshirt &/or doona, and that horrible word we hate on those mornings spoken about a thousand times, yes, the 'Mum' word!!} anyway, I walk into the kitchen for my 'hello world' coffee, that is after wading through the gauntlet that would be the kids toys strewn across the lounge room floor and what do I walk into!??
Youngest miss is sitting eating breakfast with a full fro that appears to have been styled via cereal milk, wearing a christmas tinsel scarf, her pants are off {our 'nudie' child} and she had the most amazing 'pretty' art penned/texta'd up and down her legs {insert completely unimpressed face here}.. Two steps into the kitchen and lil'miss breaks out into a grin that would put the Cheshire cat to shame. She gives me a wave and her (seriously ugly) pirate face wink when she see's me, so much joy!! Then I realised, it is not necessarily natural, and comes in all probability from her being sugared up to the eyeballs, as Dad has broken out his secret stash of Coco Pops as a weekend treat.. that of course, both the younger ones are happily tucking into..
The slightly older lad is sitting grinning next to her, he has a 'cat in the hat' hi-top hat, half a batman costume haphazardly put on and a chocolate milk beard... He also has what appears to be a piece of Vegemite toast stuck to his arm, undoubtedly from where he lent in it with his elbows on his plate.. That one thing my kids just cannot seem to grasp, do not lean in or on your food..!! He's warbling on about some crap that my as of yet squinty uncrossed eyes and ears are unable to focus upon to really understand and I have to hold up the hands of defeat.. 'Stopppp'.. They all laugh at me..
The teens are nowhere to be seen, although this is not unusual, the noise in my house see's them scurry off into the abysses of their uber cool yet semi smelly teen caves.. Obviously trying to drown out the chaos with what appears to possibly be the musical sounds, the sounds of some kind of feral cat mating ritual and I'm sure would make one's ears bleed, yet I have been sarcastically informed it is in fact THE BEST music ever made *shudder*..
Anyway, I'm allowed a 3 minute respite.. I get a few sips of black gold in and in attempting to seat myself I manage to get an army guy wedged up my arse, 'good morning!' and then it begins again, the onslaught of garbled kiddy convo.. Master 5 has just reminded me (10x in the same sentence) about the large canvas and paint project we've been talking about.. I promised we'd do it this weekend, before his 6th birthday, which happens to be tomorrow, and I'm pretty sure he's not going to let me get away with not doing it.. I'm looking at the soaking dishes, a baby bottle (with a little milk in it) sitting atop an oily frypan, and the three loads of washing sitting in baskets by the backdoor thinking sure a huge messy paint project is exactly what this picture needs :/
Dad's walking around feathers all fluffed up, proud as punch, see what I did, I let you sleep in AND looked after the kids AND I've done the dishes AND done the washing *ahem, saying 'done' implies completed, of which it clearly is not* AND his piece de resistance, I reminded Little mister about the cool day you've got planned with the paints too.. Yes *gritted teeth* look what you've done.. Damn you darrrrrrllliing, Damn you to hell..
All of a sudden I hear it "right, my job is done, I'm off for a surf!! Have a great day".. Um, what the hell.. You mean after I've cleaned up after you're cleaning up attempts.. Plus the cleaning kids etc etc..
Well yes, I am going to have a great day.. The dishes can wait till you've finished surfing m'dear, the teens have head phones which will enable music listening whilst hanging out clothes, and my younger ferals are already filthy so let's get our art on.. Beautiful warm sunshiney day, might just hose them down and water the garden at the same time.. Two birds!!
I know what it is with Dad's.. Care factor.. Today mine has hit dad zone, so stuff it.. Let play.. :D
Mama, Madly xxx
Saturday 13 October 2012
Thursday 11 October 2012
Sometimes when is enough.... Enough?
So another day off work tomorrow because my poor little man {as much of a little monster as he's being atm} is in such a lost space, it's breaking my heart.. He just cannot quieten his head or soul.. I dont talk 'serious' or about my real waking life so much when it comes to this blog or to my beautiful disabled little man, but at the moment my life is completely consumed by this. It is my life. My every waking hour, and I dont have much else to talk about... No 5yr old deserves to be in this type of internal hell..
He lost his (I could say shit, but i'll opt for>>) emotions, so very badly tonight I rang and cancelled work tomorrow in hopes of keeping him home. The hysterical onslaught that followed from him, before and after the phone call was indescribable.. I, Blaise, actually have no words.. To calm him, I had to sit for an hour and a half and stroke his hair, talk soft, garbled, monotone crap and rock him until his hysterical sobbing subsided.. That is not an easy feat, not when your nerves are sitting on the edge of a sharp steep precipice and you feel like you, yourself, could join the hysteria with your own emotional outpouring!
Maybe I should explain.. My 5yr old lad, the one with Cerebral Palsy and Aspergers(Autism) We'll call him Mr.E, has just been taken off some seriously heavy anti-psychotic drugs they use on occasion to control behavioural issues.. Why was he on them you ask?? Well I'm asking myself the same question.. I fought against them for over 3yrs, but finally caved when he became so out of control he actually had panic in his eyes when he wanted to stop but was unable to control or stop himself.. I figured 'respite', he needs respite.. From himself, his emotions, thoughts and the world as HE knows it.. I hoped it would work, and it did. For a little while. Until it didn't!
Once it stopped working, the downward slide was fast, and steep... ADD on speed, he bounced from wall to wall like flubber.. Never stopping, uncontrolled movement and thought, consistent nonsensical speech that ended in conversations being had with either his own self or talking at anyone or everyone within the family in such a repetitive tone that you physically felt unable to say 'yes, no or explain something, again, for the 567th time' knowing full well the question would be asked again.. When he's with friends, he's fine.. Busy is the key.. but 4 kids, a job, a business and a home to manage find my busy, and his busy just dont coincide..
When the twitching and stuttering began, the realisation that it {the drugs} were actually becoming an issue instead of a cure-all, we knew they had to go!! My little boy, Mr.E, has the most beautiful soul you could meet in a child, he has the most caring, gentlest, compassionate nature and these drugs did the opposite, instead of quieting his mind, they dulled his heart and soul and set his head on fire.. Being the only child we (and all his specialists) know of in the world to have survived not only 22+ strokes and West's (degenerative epilepsy) Syndrome, it was always likely a bad reaction may take place, but for christsake!!!!!! Give him a break!!!! And me, us, our family, our life!!!
What can I do aside from make him our priority?? He's my love, my baby, my heart and soul, but when does enough become enough.. When will the universe allow us to separate from this life where neither can exist as individuals. As, Blaise aka "Mum" & Mr.E "superhero".. Unable to seperate, me because my heart & mama soul won't let me, him because his body can't let him,.. When do we get a break, from ourselves and each other, that we so desperately deserve!!!??
Yes, my lad has issues, he tends to scream a lot, and I know people feel sorry for us (don't, it really shits me) compassion? yes. Pity? No.. He's pretty damn amazing, he's come so far, achieved so much and I know this is just another 'down time' another dip before the peak of the breakthrough wave I will ride to victory with Mr.E {again} I guess it just feels so dark and desolate when your there, I've been here before, I've gotten out of it on a high, it's been golden many times in between, I haven't lost the hope. I'm just over that question, the one that screams in my brain, the enough question, wondering if there's ever an answer? Or if it's a question without an answer!!!???
To add insult to injury, a big issue for me/us/Mr.E at the moment, which is causing him distress, is that his school cannot cater for him to do the school swimming program unless his Dad and/or I have a working with children check, take time off work(s) (for two days a week for 6wks) and can get in the pool with him (and find alternative care for the baby).. Stuck btw a rock and a hard place!!! Finally have work/shifts, & so want to be there yet needed on the home front for my beautiful boy.. Can't sleep, worrying about losing my job, worried about inability to sleep, worried about my son and his health & life, worried about my inability to provide softness & light to my other kids being affected by this energy that Mr.E is so unnaturally spewing out of his pores, because of this drug come down and possible epilepsy, even the Baby has me up twice a night, completely unsettled.. As for the teens, brilliantly patient, but how much should some so young have to endure, where is their break? their time and energy from me?? Worry, worry, worry..!! Worried about my private FB business, even thats lost it's joy at the moment and feels like everyone on there just wants a piece of me, one that takes my energy away from him and my other kids.. Worried about money, if I can't work how do I pay the gap on MRI's and EEG's scheduled in the next week, you name it, I'm worried about it..
And I'm worried that I'm so worried.. I've never been like this.. Is it all finally catching up with me, maybe enough is when you finally hit a point where you realise enough was at the beginning, when the universe made a decision that your enough didn't have an end.. I have had enough, but not for me, for my boy, and for that insipid question that stresses me out more than any of it.. Enough of the enoughs.. I'm not answerable to you!!!
Tomorrow will always be a better day..
Mama, Madly xxx
He lost his (I could say shit, but i'll opt for>>) emotions, so very badly tonight I rang and cancelled work tomorrow in hopes of keeping him home. The hysterical onslaught that followed from him, before and after the phone call was indescribable.. I, Blaise, actually have no words.. To calm him, I had to sit for an hour and a half and stroke his hair, talk soft, garbled, monotone crap and rock him until his hysterical sobbing subsided.. That is not an easy feat, not when your nerves are sitting on the edge of a sharp steep precipice and you feel like you, yourself, could join the hysteria with your own emotional outpouring!
Maybe I should explain.. My 5yr old lad, the one with Cerebral Palsy and Aspergers(Autism) We'll call him Mr.E, has just been taken off some seriously heavy anti-psychotic drugs they use on occasion to control behavioural issues.. Why was he on them you ask?? Well I'm asking myself the same question.. I fought against them for over 3yrs, but finally caved when he became so out of control he actually had panic in his eyes when he wanted to stop but was unable to control or stop himself.. I figured 'respite', he needs respite.. From himself, his emotions, thoughts and the world as HE knows it.. I hoped it would work, and it did. For a little while. Until it didn't!
Once it stopped working, the downward slide was fast, and steep... ADD on speed, he bounced from wall to wall like flubber.. Never stopping, uncontrolled movement and thought, consistent nonsensical speech that ended in conversations being had with either his own self or talking at anyone or everyone within the family in such a repetitive tone that you physically felt unable to say 'yes, no or explain something, again, for the 567th time' knowing full well the question would be asked again.. When he's with friends, he's fine.. Busy is the key.. but 4 kids, a job, a business and a home to manage find my busy, and his busy just dont coincide..
When the twitching and stuttering began, the realisation that it {the drugs} were actually becoming an issue instead of a cure-all, we knew they had to go!! My little boy, Mr.E, has the most beautiful soul you could meet in a child, he has the most caring, gentlest, compassionate nature and these drugs did the opposite, instead of quieting his mind, they dulled his heart and soul and set his head on fire.. Being the only child we (and all his specialists) know of in the world to have survived not only 22+ strokes and West's (degenerative epilepsy) Syndrome, it was always likely a bad reaction may take place, but for christsake!!!!!! Give him a break!!!! And me, us, our family, our life!!!
What can I do aside from make him our priority?? He's my love, my baby, my heart and soul, but when does enough become enough.. When will the universe allow us to separate from this life where neither can exist as individuals. As, Blaise aka "Mum" & Mr.E "superhero".. Unable to seperate, me because my heart & mama soul won't let me, him because his body can't let him,.. When do we get a break, from ourselves and each other, that we so desperately deserve!!!??
Yes, my lad has issues, he tends to scream a lot, and I know people feel sorry for us (don't, it really shits me) compassion? yes. Pity? No.. He's pretty damn amazing, he's come so far, achieved so much and I know this is just another 'down time' another dip before the peak of the breakthrough wave I will ride to victory with Mr.E {again} I guess it just feels so dark and desolate when your there, I've been here before, I've gotten out of it on a high, it's been golden many times in between, I haven't lost the hope. I'm just over that question, the one that screams in my brain, the enough question, wondering if there's ever an answer? Or if it's a question without an answer!!!???
To add insult to injury, a big issue for me/us/Mr.E at the moment, which is causing him distress, is that his school cannot cater for him to do the school swimming program unless his Dad and/or I have a working with children check, take time off work(s) (for two days a week for 6wks) and can get in the pool with him (and find alternative care for the baby).. Stuck btw a rock and a hard place!!! Finally have work/shifts, & so want to be there yet needed on the home front for my beautiful boy.. Can't sleep, worrying about losing my job, worried about inability to sleep, worried about my son and his health & life, worried about my inability to provide softness & light to my other kids being affected by this energy that Mr.E is so unnaturally spewing out of his pores, because of this drug come down and possible epilepsy, even the Baby has me up twice a night, completely unsettled.. As for the teens, brilliantly patient, but how much should some so young have to endure, where is their break? their time and energy from me?? Worry, worry, worry..!! Worried about my private FB business, even thats lost it's joy at the moment and feels like everyone on there just wants a piece of me, one that takes my energy away from him and my other kids.. Worried about money, if I can't work how do I pay the gap on MRI's and EEG's scheduled in the next week, you name it, I'm worried about it..
And I'm worried that I'm so worried.. I've never been like this.. Is it all finally catching up with me, maybe enough is when you finally hit a point where you realise enough was at the beginning, when the universe made a decision that your enough didn't have an end.. I have had enough, but not for me, for my boy, and for that insipid question that stresses me out more than any of it.. Enough of the enoughs.. I'm not answerable to you!!!
Tomorrow will always be a better day..
Mama, Madly xxx
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