Tuesday, 24 February 2009

Once more into the Breach!

With the change of guard now official since Feb. 1st, it was now deemed safe for us to return to Enable Ireland, for the first time since last summer. That old fire breathing dragon was no longer stalking the gate. Mind you, I still can't be 100% sure that the Children First child protection guidelines are now back on the menu, but that's an improvement on being 100% sure that they were off, as was the case during the former dragon's tenure! Nobody warns you of these ethical dilemmas when you venture forth into the great grey unknown of Irish disability services. You see, for the last six months, Rory hasn't been able to access Occupational Therapy, Physiotherapy or Psychology services. They were on offer alright, but I couldn't guarantee his safety where they were on offer. My Hobson's choice was to a. send my son for treatment to an organisation, where the management were ignoring national child protection guidelines, or b. not send him for therapy at all.

So, operating on the maxim that has stood me in good stead up to now, I chose the latter, as I reasoned that no therapy was better that bad therapy. Luckily for us we were able to work with Rory at home and he continues to make progress. Of course, we'd have made much more substantial progress with the help of qualified therapists but, such is the joy of the Irish system! The outcome for the child is never a priority. Enable Ireland, yes another great mind numbingly, moronic moniker of the HSE variety. Who exactly are they enabling? My contact with them has left me decidedly disabled, mentally and emotionally.

The more encounters I have with the system, the more I feel like poor old Inspector Clouseau, as some other branch of the HSE leaps, Kato like, from a wardrobe in an attempt to flatten me. I wonder if there's some ancient Asian martial art that can protect you against brainless bureaucracies? A kind of queue jumping Judo or a report busting Karate? A Kung Fu for form fillers? I could train as a HSE Mandarin mangling master! I could get a black belt in bureaucrat banjaxing! I think I could be on to something here!

.....Or maybe, it's just that this time, I really have lost it.


Wednesday, 11 February 2009

Is This A Sign?

I've just been sent an application for E112 funding - this is for treatment outside the state. It seems we're being referred to a feeding clinic in London. I say it seems, as, since I don't officially have a copy of the paediatrician's report, I can only assume that's what is in fact, happening. Should I be hopeful? Cynical? Joyful? Impressed? Relieved? Bored? You see, without all the information, I find it difficult to come up with the appropriate reaction.

So, I did as I was asked, filled out the form and sent it back. I suppose now I wait. I wonder if they'll contact me when or if we are to go to London? Maybe they'll tell everyone else on the team and hopefully the news would filter through to us eventually. But then again, if they haven't told us already, would we really need to go? Maybe the doctors could just, I don't know, talk to each other and well, just ignore us, we're probably only in the way.

But, should I pack a bag, just in case?


Sunday, 8 February 2009

Steps Forward and Backward

Well some of my January list of battles have been well dented this week! Who'd of thought we'd see results so fast? Of course in typical Irish fashion, what the HSE giveth with one hand, it taketh away with the other!

Ok lets start with the goodish news:

Low and behold, didn't we get another pair of shoes! In this climate, I am rating that as a personal coup. Rory's very pleased with the noise they make. Could this mean that HSE policy is now to actually finish orthotic treatment once it's started? Surely not? Such common sense and foresight would be tantamount to treason in this economic winter of discontent. Well, for whatever collective rush of blood to the head that resulted in this podiatristric (is that a word?) bounty, we are truly grateful!

There are also unconfirmed reports of a Paediatrician's letter floating around in the ether. Seemingly, it has been sent to a number of people connected with Rory's case, GP's, Speech Therapists, Nephprologists and the like. However, it was not deemed appropriate for the eyes of his parents. Proper order too, I say, you couldn't be giving the patient their own notes. What would we know about the situation? We're only his parents and the former owner of his new kidney. I do hope it proves helpful, this report, but mostly, I hope it says nice things about us. Maybe this is another record, we met the Paediatrician on Nov 20th and the report goes out in Feb., what's that? A little over 8 weeks? Good job his global developmental delay isn't fatal! Mind you, I think my own development is going into decline a this stage!

Now here's the 'taketh away' bit. Community Don't Care has cut back our nursing cover for Rory by 70%. So we can kiss goodbye to 70% of our current short sleep supply 'till he learns to eat and pee on his own. This particular blow was delivered on Christmas Eve, nice touch eh? We appealed, naturally, but got the big fat NO on Fri.

Not to be outdone, by Community Don't Care, the Ambulance Service has cut our transport to clinics in Temple St. I now have to work out how to drive while emptying a urine bag in the back seat. Anyone out there with any experience of the gymnastics required for this? Please get in touch, I'm going to need some tips. The logic behind this decision being, that transport stops 6 months post transplant, and fair dues we are now over a year out. A very fine rule this is too, if you are an adult and you can go to your local nephology service. We've no one to blame but ourselves you know. On reflection, it may have been ill advised to have a chronically ill child while residing outside the greater Dublin area, what were we thinking? Be warned any of you out there who may be considering a similar lifestyle choice! But rules is rules and Rory has broken way too many in his short life and the powers that be are getting a tad tetchy. He defied them all by surviving, now it's payback time! As our friend in Community Don't Care likes to remind us, he has clocked up quite a bill with the state already.

I wonder if they'd give us a credit note for the kidney?


Thursday, 5 February 2009

Hope Springs Eternal

I'm back, refreshed and ready for action. I've been reflecting a lot on our situation, it's been really good to have time to process the last 5 years. Much of it has been quite un-processable! So those were the bits I parked and filed under ' to be attended to at some undetermined time in the future'. As the old saying goes ' no problem is too big that it can't be run away from'.

It's funny how reflection happens in snippets, events drift in and out of your mind, often triggered by seemingly unrelated events. The historic inauguration of President Obama, and the appearance of the first Daffodils has me pondering on the nature of hope. It's a word we bandy about with such ease, we roll it off our tongues without too much thought. I remember times when Rory was very sick people would often say - where there's life, there's hope. I never understood them, at times I even wondered if they themselves understood what they were saying. Even if they didn't, hearing the sincerity of their concern for our family, felt like a lull in the storm.

Hope's a funny one though, it's not always easy to maintain. I look on hope as a gift - not unlike that of religious faith (a gift, I personally have never received). This is not just a passive gift, it can't just be passed on without being continuously nurtured. Like the dying embers of a fire, hope is fragile and has to be stoked continuously. It takes courage, energy, tenacity and, lets be frank, a certain insanity to keep it going. Although blessed with a fundamentally optimistic disposition, I frequently struggle to maintain hope. But then, here's the another thing about hope, it can be lost and then found again without recrimination. When energy lags and the embers struggle to glow, the flame can go dormant, then when you least expect it, some whisper of wind from left field, will tickle life back into to smouldering ashes. When hope is passed between us, we have a responsibility to package it well, like fine bone china, it needs to be handled with care. The receipt of it is also a big responsibility, as hope like fine china, once broken, doesn't stick back together again without leaving a scar.

As the combination of expectation and desire, our ability to hope is often tied up with our sense of self worth. Hope needs the nutrients of self esteem to survive. Obama's message of equality and righting of old wrongs is hugely powerful, as he is the visual embodiment of that hope fulfilled. Daffodils are the proof that light comes again each year after the dark winter. Lets face it, if we loose hope what have we left? This is all very philosophical, I hear you say, but where is it leading? The short answer is, I don't know, but I just felt I had to give you some insight into my current state of mind. My hope is still alive but it 's currently on life support.

On Monday, I got a letter from Enable Ireland. The woman who knowingly allowed my son to be referred to a dangerous speech and language therapist, has been promoted. After all the complaints, the findings, the tears and the downright terror, she has been rewarded for her negligence, reckless endangerment and lack of due diligence. It is very hard for me to hope that Enable Ireland will ever be able to provide for my son's needs. It is very hard for me to hope that my son's needs will be met in this country.

So, I've been thinking, maybe I've been placing my valuable, hard earned hope in the wrong place. My hope is now going to reside with people who are capable of nurturing it, not inhumane institutions who have no concept of the fragility of hope.

I'm already looking on the bright side, at least that bat has left and I don't have to deal with her anymore. Would it be audacious of me to hope that her successor is more humane?

No, that would be just plain irresponsible.