[tri-wings] Karen and Alex - an update

Hi everybody,
I told you all that I was waiting on a letter from Karen well she sent it to 
the farm she must have remembered me saying that we are moving back and thought 
it had already happened - but we aren't going back till Friday.  So to catch 
everybody up on the 22nd April I realised that I hadn't heard any news from 
Karen since the 15th and after a phone call from Jocelyn (17th) to say that she 
was worried because she couldn't get in touch with Karen, I thought I had 
better try.  So no phone access, internet or anything I decided to call a local 
church to go visit.  They visited and found Karen and Alex OK but with no phone 
or internet due to mounting bills.
so now to the update letter I have decided to type it verbatim so that I don't 
miss a thing so from here on out it's Karen-
Dear Everybody,
Please forgive the bulk letter however such is my mood :-) (see too much time 
writing emails!! Can't leave the bad habit behind)

As many of you will have already discovered I have no telephone at present, of 
any description, meaning landline, mobile etc, no internet connection and no 
TV.  Talk about isolation.  However such is the state when you cannot afford to 
pay the bill.

There is a long story behind that but the short of it is that I can't afford to 
pay it and am not sure if I can get the money together in the near future.  I 
haven't been able to pay more than little bits in the last 6 months so I owe 
them heaps.  The bottom line is that Alex's medical expenses this year have 
been horrendous and the recent hospitalisations have been the last straw.

Alex - the real reason that I am writing - to give you an update.
The tests - I don't know a great deal because
I DON'T HAVE A PHONE
However, the MRI's were good except that they did find a group of blood 
vessels, very dilated and feeding something deep in his brain.  They don't know 
what - all that they know is that they shouldn't be there.  The suggestion is 
that it's just a congenital abnormality however they weren't there with his 
previous MRI - so I guess is in the hands of the neurologist.  I'm not sure 
because
I DON'T HAVE A PHONE

The real upside is that there is no tethering of the spinal cord so those 
issues are related to the paralysis.

The cortisol.  Alex was admitted again for the Synacthin challenge - stupid - 
why discharge us Sunday and then call us back in Monday!!!! Anyway I have no 
idea what the results are because
I DON'T HAVE A PHONE

The endocrinologist did try and ring me and when he couldn't get through mailed 
me an appointment for the 16th of June, earlier if he gets a cancellation.  
From that I gather that there is something.  If there was nothing he would 
simply have written that in the letter.  This doctor is good but he isn't known 
for his bedside manner or communication skills.  Instead he has given us an 
appointment, outside the hospital even, and relatively soon.  Usually it takes 
6 - 9 months to get an urgent consult with this particular doctor, so June is 
quick.

Alex himself is OK.  Only a few headaches but he is still very, very tired all 
the time, losing weight etc.

We are doing what we can regarding the phone situation.  I am trying to sell 
anything and everything that I can possibly get a dollar or two from.  
Unfortunately I don't have much that I can sell.  Alex's Lego has gone on Ebay 
(my niece is doing that for me), as are all my craft books.  I am also trying 
to sell my Royal Doulton pieces.  I didn't want to as they are family heirlooms 
but such is the situation..........Unfortunately I am told that my teapot will 
not fetch a lot, however the dinner set might.  It's not Royal Doulton but it's 
old (1920 or so) and Willow-ware.

Alex did sell ANZAC biscuits last weekend and we are going to have a garage 
sale again this weekend.  I am also going to try and sell the car, not that 
it's worth a great deal.  Even with all that I don't think that we will get 
anywhere near what we need.  If anyone has some bright ideas please share them. 
 My counsellor (for my panic attacks) is ready to let our local paper know and 
give DoCS a serve.  I think I like her as she is down to earth - she has 
already said that my panic attacks are only due to an inadequate income - fix 
the money and the panic attacks will go away.  Makes sense to me.

I know that Alex is at risk without a phone - I am well aware of that.  Believe 
me no one is as aware as I am that I can't even call an ambulance.  I am 
sending him to school but I may not be able to do that for much longer, 
especially if they find out that I don't have a phone.  He has already missed 
an excursion, and he needs one of these special calculators for math which I 
can't afford.  The stupid thing is that if I have to home school him again I 
can get an extra $1000 a term from Centrelink which makes all the difference 
between sinking or swimming.  Dumb system!!!

I tried to place him into foster care with DoCS as a child at risk so that I 
could get a job and get some money together to pay for outstanding accounts and 
some for future needs but they won't do it.  They tell me that they don't see 
him as being at risk because he isn't being abused.  And of course they won't 
increase the medical allowance, in fact I haven't seen a cheque since January 
so I gather they aren't going to even do that anymore even though it's approved 
through till November.

So it seems that to get help from the state I need to bash him.  Stupid!!  
According to society I can kill him, that's OK, I just can't hit him.

My mood is dark so please don't tell me to hang in there.  Will we survive, 
maybe, because as I said my mood is dark.  Raising Alex was isolating in 
itself, having no car, no means of communication, and only the radio to listen 
to (and that only as long as the batteries last) makes me feel so alone it's 
not funny.  Wayyyy too much time to think and nothing to distract.

If anything can go wrong it is at the moment.  From the little to the huge, I 
think Pluto and Mars must be having a ball.  The little? even the toilet seat 
broke, so did the kettle, Housing have made yet another mistake regarding my 
rent (and of course they want more money from me), someone even stole some of 
Alex's chickens and he is devastated.  I could keep on going but simply put I 
JUST WANT TO GIVE UP!!

So that's our cheery update.  For those with connections to others who may not 
be so lucky to get this update (or is that unlucky enough) please pass the word 
and explain why.  Maybe one day I will be back in touch.  At worst the bonus in 
June may get us out of trouble but the 30th June seems a long way away at the 
moment.  It certainly won't solve the real long term issue that his expenses 
are increasing and the income isn't.

Love to all

Karen


So as you can all see Karen is really in a pickle and feeling very down.  This 
letter was written before we sent any of the cheques so I hope that the money 
we have sent so far has gone a little way to helping with her bills.  I have 
about another $500 to send but I am waiting a little bit more so that everyone 
can have the opportunity to help.  I am so angry that the government is not 
helping Karen more.  It is impossible for her to work but they don't recognise 
the fact that if Karen was working it would cost them way more to care for Alex 
than it does now.  Also I am really angry about the chickens they were a gift 
from a dear friend of ours and Alex was so excited about them!!  I will update 
you all more as news comes to hand.  As I said we are moving back to the farm 
on Friday.



Don't worry about the world coming to an end tomorrow it's already tomorrow in 
Australia
Charles Schultz

"Life is like a box of chocolates you never know what you're gonna get!"
Forrest Gump's mother (wise woman)

Tracey RM/RN <'///>< Mum to Jen 21 (casual at Kmart), Louise teen angel T18 (in 
heaven July 1990), Jono 17 (self-confessed computer geek - whose geekness is 
almost complete now he has braces!), Jesse 14 (wanna-be surfer & drummer 
extraordinaire!) and wife to David my soul mate and best friend 29 years now

Our God Reigns
homepages - www.geocities.com/cuddlefishtoo/index.html
myspace - www.myspace.com/cuddlefi5h
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
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