Sunday, August 7, 2011

Letting it out

I've been doing a lot of stuff for Snail lately, in the background, and occasionally let out some of my frustration while in good company.  After a couple of long whinges, just as I am warming up, really, I start feeling like I am the world's worst conversationalist, a champion whinger, Boring McBorey-pants, and all round slack friend.

I should probably say up front, this is NOT about anyone making me feel this way, this all comes pre-installed. No one in my life is actually rolling their eyes or plotting their escape, swearing never to see me again [I don't think...]. Oh no, this is all just what I'm telling myself as I'm talking.

I usually shut up round then.

It's just all really, really big.  And sometimes awful.  Funding sucks, medical people are not always awesome, no one seems to get anything done, or know what to do, and if you don't ring, and ring, and ring, you don't get called back.  Some things are funded and other, really useful and obvious things, aren't.  Administration sucks.

For example: in the past couple of weeks, I've been HOURS on the phone dealing with money from a rather large government department that got paid to Snail's mother that should have been split equally between her and DinnerDad, despite every other bit of funding for Snail in the past 8+ years being split 50/50 (as is her custody).  Apparently, this payment can't be fixed.  "Sorry!"  Another government payment got over-estimated, and there goes another two, hour-long conversations, with two different government workers down the time drain (otherwise known as my life).

Here's a selection of what I'm doing or organising at the moment for Snail:
- a stroller style chair which we hope will be more suitable when we're out and Snail has seizures - like these ones!
- a tiltable but still self-propelling capable wheelchair
- dealing with the fact that the funding agency only wants to fund one chair, and also, not yet, as her current chair isn't 5 years old, so should, apparently, still be fine for her (!!)
- picking the chair
- trying to trial different chairs
- getting various physiotherapists to advise on the chairs
- applying for the chairs
- new restraints for our car
- researching adapting our car for wheelchair travel
- boggling at the fact this is funded in at least two other States in Australia, but not the State we live in.
- getting new orthotics prescribed, funded, and fitted (including casting)
- referral and appointments for a big CP centre to see an orthopedic specialist and get a gait assessment
- trying to get an appointment with her old paediatric neurologist, who now no longer takes private patients
- getting her medical records from said specialist
- referrals and appointments with a new epileptologist
- referrals and appointments with the Children's Epilepsy Centre in Melbourne (the only program of its type in Australia)
- the variety of tests (including MRI under general) that need to be done for all these appointments
- trying to coordinate this stuff, as she also needs a hip x-ray (also under general) and we only want one procedure to do both tests
- a new shower chair
- a switch adapter for the Mac
- getting an iPad prescribed and funded (in QLD, the funding body don't fund iPads)
- trialing new nappies, as Snail has grown heaps, and her current ones aren't absorbent enough
- sorting out the funding for nappies (see the above, whoops, we paid it to the mother phone call fun!)

A lot of this stuff takes time, and is frustrating, or turns out not to be possible, or we have to pay for it ourselves, and so on and so forth, ad infinitum.  Add on top of this that we don't get on with Snail's mother (at all), and that some of the stuff that Snail deals with now that makes it all necessary is just really fucking sad and depressing and never-ending and worry-about-the-future-ish, you can see that if I start talking about "my day" or "what have you been up to," and I don't stick strictly to the awesomeness of my three year old, that I suck as a conversationalist.

Because what I've been up to is this:  I've been dealing with seizures, or DinnerDad's bloodly ex-wife, or some government department, or some medical department, or trying to pick a new wheelchair because Snail gets so many seizures and her current chair is so wildly unsuitable for this that I'm practically housebound in case she seizes, and, and, and..

Now I have to apologise to my blog for boring it to death with my stuff.


Elizabeth said...

It's not boring to me although it does make me sigh. In recognition -- everything except the ex-wife. I marvel at your ability to do so much work, take so much time for Snail -- I know you love her and that love is evident, but what you do for her is amazing.

Continued courage to you onward --

Anna said...

I feel your frustration! We are currently trying to get R. a new wheelchair and it seems to be taking forever. We can get it partially funded but would have to wait for 12 months. So instead, we have been scrimping and saving and nearly have enough. Now we are waiting on some more funding and the OT/Physio to stop being slow and actually order a couple to trial.
It just seems to go on an on.

I hope you start to get somewhere soon. Thinking of you.

Kestrel said...

It's not boring to me and I'd rather you blogged about it, got it out and clear than feel like you've got to shut up unless you post vogue worthy photos and accompanying text.

It all reads like bloody hard depressing unrewarding work and having done the whole "deal with bureaucracy and still find some sort of calm and pleasantness under it to then deal with my childre"n I can begin to imagine the nightmare you're going through right now.