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One of Hellena's twins has leukemia


ladyaudley
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He's doing amazingly well really.  Lady Cilentro Children's Hospital is full of the most gorgeous, loving, compassionate and non-judgemental folk in the world :)  We're their favourite hippies.  Going in to hospital for his chemo is a social outing, and we're all pursuing a fully integrated approach, with the best of western and alternative medicines, all run past the pharmacy.  They were a bit worried at first (like you mob) that we were going to be difficult, but everyone there has told us that we were a bit shocked at first, but then saw the direction the flow was going, and jumped on board 110%.  We're gold star patients :)  They told me early on that the kids that thrived the most on treatment were the ones who's parents made it as positive as they could, so that's been the primary goal.  I've witnessed how hard a ride it is for those who are anti-system and negative.  And my other kids are all going to the hospital school and adoring it - maybe almost as much as their teachers are enjoying having them!  We went to parent teacher interviews the other week, and they were all telling us that our kids have caught up unbelievably quick with the rudimentaries that they may have missed being homeschooled, and are worlds ahead of the other kids in their social skills, enthusiasm to learn, and intelligent curiosity.  And the hospital social worker, who would also be part of child protection services for the americans, loves us to bits and has no concerns whatever for any of our children, just so those worried can relax.  She asks us along sometimes to connect with other parents who are having a hard time.  Oh look.  My verbal diarrhea seems to be active. :)   But when it comes down to it, and like my acupuncturist told me at 5.30 in the morning when I was freaking out early on.......there is no other cure for childhood leukaemia, and we're in the very best place we could be to heal it.  And I'm tremendously greatfull for that. 

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I am SOOOOOO happy to hear that the wee one is doing well. 

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Wonderful news, thank you for choosing to share it with us. Sending continued good vibes from the U.S. 

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@Hellena Post Hi, and welcome. There are more than a couple of us with a soft spot for you and your family :) 

So glad to hear that Merlin is doing well. What a horrible time for all of you. Thanks for updating us.

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There's been some truly funny moments........like when I warned our Oncologist and the nurses that Currawong was going to bring Merlin in the Hungry Jacks burger that he requested after chemo, hidden so nobody would know that he'd bought fast food....just before he did.  They were all wetting themselves when he pulled the paper bag out of his camouflage.  And her reaction when I told her I'd been telling all my hippy mates that he was getting healthier the more chemo he got :)  They're such a good mob. 

It has been horrible, but equally wonderful meeting all our new community at the hospital here, and witnessing the magic of modern medicine.  And by the way........Currawong and I are totally and completely joyfully monogamous.....I know there were assumptions made by some here (and half the women in Nimbin) that we were polyamourous, but we waited until it was really uncool to be heterosexual and monogamous :) 

It's been a massively humbling experience, and it makes my heart skip a beat when I realise how close we came to losing Merlin.  The freakiest thing is feeling like I'm only just now getting to know him.......and realising that he was very slowly crashing and burning into leukaemia land for maybe years before he was diagnosed.  Fading into the background.  Being our 'quiet' kid.  HA!  He gets more gregarious, loving, outgoing, loud and bubbly the further we go down this track!  And he loves all the nurses and doctors and staff too.  He even misses being in hospital sometimes.  It's been overall a good experience for him.  I love the Captain Starlight workers too.

 

Ooooops.  There's that verbal running off thing happening again......

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I love the little statement above my avatar......who comes up with the lines?

And HAHAHAHAHahahahahahahaha DinglyDoll.  The other ones are a lot tamer.  Sextapusses just had to be sexy!  And I can't take the whole blame/credit.  I collaborate with the energy of fibre, cause as I got it from John Hagelin himself, everything is energy that remembers where it's been.  And sheep are silly!

On a serious note.....I have been approached by a psychologist who works with abused children, who asked if we could talk about using them in her therapy.  A crocheted dude with hairy man boobs and a foreskin is a lot less threatening for little kids, than a more realistic version, and could help them point out and express what happened to them.  They were also intended as a prop for a group we were setting up to go along with the Birth and Beyond and Death and Beyond groups in Nimbin.  To talk about sex positively with youth and whoever else was interested, to try and help rescue them from porn and mistaking sex for love. 

And they're funny.  Don't you think?

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Welcome, Helen. You've got the biggest balls I've ever encountered, to read about yourself and then join the community. I'm so happy to see some people already said WTF, when others said child welfare should investigate you. 

I've recently seen another family dealing with childhood leukaemia, and my daughter had a childhood friend, with it, who is now an adult. I wish you and the family the best. It's really hard to be the mother of a sick child. 

Actually, I suppose I always knew you had big balls, living as a hippie, and having 8 kids. I'm kinda a hippie, at heart, but turned into a mortgage payer, as soon as I had one. I think it's brave and daring to live an alternative life style with kids, and as long as the kids are loved and fed and safe, it's got to be heal thier then the fundy crap I grew up in. 

We had lice. My daughter and I battled them for 2 months EEEEK. 

Edited by jjmennonite
Fucking autocorrect
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1 hour ago, Hellena Post said:

On a serious note.....I have been approached by a psychologist who works with abused children, who asked if we could talk about using them in her therapy.  A crocheted dude with hairy man boobs and a foreskin is a lot less threatening for little kids, than a more realistic version, and could help them point out and express what happened to them.  They were also intended as a prop for a group we were setting up to go along with the Birth and Beyond and Death and Beyond groups in Nimbin.  To talk about sex positively with youth and whoever else was interested, to try and help rescue them from porn and mistaking sex for love. 

 

That's awesome!!! Using them would definitely be less threatening for kids. Whodathunk that something funny would end up being so meaningful!

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That's really lovely to read jjmennonite.  Thank you :)  I've got to meet a few survivors since this all began, and they're all amazing people living healthy lives.  The coolest survivor I met only the other week - Albert from Spain - who was diagnosed with the same Leukaemia as Merlin when he was 5.  He's got Acute Lymphoblastic Leukaemia by the way.  If there was a 'best' sort of cancer to get, he's got it, and at the 'best' age for total recovery too.  They estimate his chances of complete recovery to be at 98% which makes me very happy :)  Anyway, Albert is now 26, and has been hitching around the world (75 countries) since he was 15, living without money, and with a wheelchair.  He's written two books about his experiences, and gave the money he made from them away, because he's so used to his money free lifestyle.  And has his base on a community in Spain with his friends.  He asked me how Merlin was doing with the treatments, and said the worst bit for him, 11 years ago, was getting lumbar punctures with no anaesthetic!!!  And how much that hurt!  So glad that they knock Merlin out for his lumbar punctures, and he wakes up happy and pain free.  So glad for all the help that's come our way. 

The funny thing about the headlice and me, was that I used them as a metaphor, and our family is completely lice free!!  Mind you, they are pretty endemic down in the Northern Rivers, and we have had bouts of them, like everyone else :)

And someone made a comment a while back, about how if we'd met before you all hated on me, we probably would have had a blast on here, and I liked that.  I can so relate to not wanting to let my children endure all the fundy crap I grew up in!  I went to seminary for two hours before school every morning for farks sake!!  And my brothers who went on missions are still lost souls.  I also have a severe dislike for fundamentalist hippies, who you seem to mistake me for.  We've been on the wrong end of more than a few purer than thou hippy projections in our time, especially around the Steiner communities.  We're not actual unschoolers either, and never were, cause we believe in limits and boundaries.  Most of the unschooling stuff I wrote before I read anyone elses, like I said at the beginning.  And when I read their stuff I realised that we didn't really fit there either. 

There's been some very astute observations made about us on here, and I'm greatfull for that.  Some shit you got way off beam though, but that's to be expected.  I'm just trying to do the best I can from my past experiences and life experience, like everyone else. I do have an older daughter who went through the school system, and we had so many traumatic experiences, from state schools to private schools to Steiner schools.  And most of my 'batshit crazy' births were because we learnt from life experience how important bonding is.

I think you might just have to accept that I write in epics.  I'm the same when I talk.  Give me the least encouragement and I'll talk your ears off.  :)

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6 minutes ago, Hellena Post said:

Give me the least encouragement and I'll talk your ears off.  :)

I'm all ears! 

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49 minutes ago, CrazyMumma said:

@Hellena Post
 I feel for you so much. I hope I'm never faced with a child ill like that. Another Aussie here.

There are a few of us Aussies here :) 

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    I am delighted you stopped by, and even more delighted to hear how things are going. I genuinely hope for the best for you and yours. 

        

     *I lurked here on and off for a long time and remember when you first came on the radar. I think a majority of the people on that first thread are not here anymore. 

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6 hours ago, Hellena Post said:

I love the little statement above my avatar......who comes up with the lines?

        *Right Hellena??? They are hilarious!!!

And HAHAHAHAHahahahahahahaha DinglyDoll.  The other ones are a lot tamer.  Sextapusses just had to be sexy!  And I can't take the whole blame/credit. 

        *Love your sense of humor!

I collaborate with the energy of fibre, cause as I got it from John Hagelin himself, everything is energy that remembers where it's been.  

        *Energy fascinates me.

On a serious note.....I have been approached by a psychologist who works with abused children, who asked if we could talk about using them in her therapy.  A crocheted dude with hairy man boobs and a foreskin is a lot less threatening for little kids, than a more realistic version, and could help them point out and express what happened to them.  They were also intended as a prop for a group we were setting up to go along with the Birth and Beyond and Death and Beyond groups in Nimbin.  To talk about sex positively with youth and whoever else was interested, to try and help rescue them from porn and mistaking sex for love. 

         * You are awesome for assisting in such important and difficult work with children and youth.

And they're funny.  Don't you think?

          *They are hilarious. I actually have a few artist friends who would probably enjoy having them on a bookshelf! Hahahaha! Welcome to our group, Hellena! Sending healing wishes to your precious child!

 

This has been a wonderful conversation!

Edited by DinglyDoll
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8 hours ago, Hellena Post said:

He's doing amazingly well really.  Lady Cilentro Children's Hospital is full of the most gorgeous, loving, compassionate and non-judgemental folk in the world :) 

Welcome, Hellena! 

I can't tell you how GLAD I am to read that Merlin is doing so well. Looks to me like you have given him the best of all worlds when it comes to care. I hope that the progress continues until he's in remission and then cured.

Take care!

 

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3 hours ago, Grimalkin said:

    I am delighted you stopped by, and even more delighted to hear how things are going. I genuinely hope for the best for you and yours. 

      

Me too!

 

i really hope you stay and keep posting, Helena. I'm just so happy that's merlin is going so well. 

 

Another Aussie here :)

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This whole thing is making me cry.....this is quite cathartic you know!  When the first wave of hate from here hit all those years ago, and I read all 11 or 13? pages of them, it was like the worst thing that I'd never imagined could have happened to me.  I was shaking for the whole day, and it just floored me.  I couldn't believe that people who'd never met me, could make such huge and smutty assumptions about me, and everything I did. 

I really didn't think I deserved all that flak I got about my kids names.  My last name is Post for fucks sake!  I could have called them Rusty, or Public-Leaning, or Australia, or Deaf-As-A, or Thick-As-A or Wood!!  Max came with his name, I had no choice over that. 

Anyway, it was such a shock, and I had to look deeper into the things that really hurt, and that was ultimately very good for me.  Prompted me to write 'My Truth', cause for quite a while before that, I really hated how so many bloggers I knew were one way in private, and another completely on their blogs.  So I'd wanted to do a warts and all confession, just to show how not perfect I was, and you mob really helped that. 

And I've been looking into everything I can about hate forums and cyber bullying and trolling ever since, trying to understand.  And from all the secret trolling of you mob that I've been doing over this time.........I have seen a lot of deep care and concern, and astute points made even if very harsh.  You kind of represent to me the shadow of us all.  The things we think but never dare to say, but remain there nonetheless.  And so many other things. 

So this is pretty huge for me.  You were my first :)  Don't know if you know, but I've gone on to be hated by the GOMI mob as well, and Amy Teuter.  I like you mob better than them :))  Thank you for being so gentle with me :)

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1 hour ago, Hellena Post said:

I really didn't think I deserved all that flak I got about my kids names.  My last name is Post for fucks sake!  I could have called them Rusty, or Public-Leaning, or Australia, or Deaf-As-A, or Thick-As-A or Wood!!  Max came with his name, I had no choice over that. 

love it ^^ Names will always be contentious and your kids do have crazy names, but I have a strange name too. 

 

I am so so glad to hear Merlin is doing well and that your whole family is having a positive experience through such a hard time. It's inspirational to see you tackle this with verve and with love. Keep it up!

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Welcome Helena! Glad to hear that Merlin and the other children are doing well during such a hard time. I agree for 100% with ladyaudley: it's inspirational to see that you and your family are tackling this with so much love. Sending good vibes from the Netherlands.

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I'm so glad Merlin is doing better. I actually do think of him often. 

I have been a bit harsh on you in the past, but I can say that it is clear you have children because you love children. You can tell that you actually LIKE  your children. So many people we discuss here seem to despise their children. I would send the Jill Rod. children to spend a month with you. No toddlers/preschoolers being locked in cages, no being forced to raise siblings while Mother Dearest takes pictures of herself, no being forced to literally sing for their supper, getting to run and play without being concerned they have messed up their hair and make up. A month with you would be pure heaven for those poor neglected children. 

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I am so glad to hear that Merlin is doing well ! I wish him a speedy recovery :) It's great that the hospital experience has been so positive for him, I think that goes a long way.

I have to say that I really admire how free you are and how you live the way you want without caring about judgement. I feel trapped in my current life so I guess it amazes me a bit to see someone daring to be so unapologetic about living her life her way. And I'm very much in the minority here but I'm interested in homebirth and thought your birth experiences were very interesting and cool. Thank you for sharing. 

I know this is a bit off-topic but I am interested in your experiences with Steiner schools. My great-grandmother was one of Steiner's first followers in England. She poured all the money she had into founding a school there and then taught there all her life. Much of that side of my family was educated in that school. I only knew of positive things about it and some of the Steiner atmosphere is very familiar to me. Then recently I learned that in France Steiner schools are on the watchlist for cults ! So I am interested in learning what the experience is really like and what the negatives of Steiner schooling are.

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20 hours ago, Grimalkin said:

     *I lurked here on and off for a long time and remember when you first came on the radar. I think a majority of the people on that first thread are not here anymore. 

Well that's nice to know.  I heard from someone there was a big shakeup here a little while ago?  Something about the person running the show being sprung for something?  Might have just been chinese whispers, know how that can work......

18 hours ago, DinglyDoll said:

 

This has been a wonderful conversation!

I surprisingly totally agree with that :)  Wierd.  But wonderful!

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