Old Wounds And New Wonders

Did I ever mention that Our Lady's Hospital for Sick Children in Crumlin gives me a severe debilitating does of the wobbles? Since it has been the location for some of the darkest days of my life; I try to avoid going there at all costs. My avoidance tactics ran out last Thursday when the elastic on my get out of Crumlin chord snapped. A minor problem with boy wonder needed to be seen by a urologist. The urologist in charge of junior's plumbing second fix, is based in Crumlin, so, reluctantly, we returned.

The other kidney said he felt like he was experiencing post traumatic shock disorder. I knew immediately what he meant. The first year of Rory's life is a blur for me, the stress and trauma was so intense that I just prefer to park it in the past where it belongs. However, no matter how hard we try to restrain it, that old skeleton can't help giving the cupboard door a really good rattle every now and again. Lest we get ahead of ourselves!

I find it very hard to distill the essence of my aversion to Crumlin, it's a volatile cocktail of fear, rage and despair. The staff were wonderful, warm, professional and caring, the conditions on the other hand, were somewhat akin to those of a Romanian Orphanage circa 1988. These pictures will give you a taste of how we lived for three months while we learned how to dialyse our new kidneyless baby:

Back in 2003, there was no dedicated renal ward in Crumlin so we were housed in a general baby ward and exposed to all those baby infections that rear their snotty little heads every winter. Rory picked up everything that was going; many a weird and wonderful virus. One of those nasty doses landed him in back in ICU on a ventilator when he was about 7 months old. Now that was a dark day.

For respite, we had the parents' accommodation. Again it was warm and welcoming but it hadn't been decorated since the 1950's. Anytime I stayed there, I couldn't help feeling like I was sleeping in the middle of a John McGahern novel. Suffice it to say the surroundings were not conducive to the recharging of flat parental batteries. I shuffled round that hospital like a zombie for months, until one day I was, quite literally, shocked back into the land of the living. 120 volts it was, delivered with a flash as I plugged in the dialysis machine to this socket:

That was the day I got my fight back. The shock lifted me off the floor and out of my torpor. I got angry, proper red rage spots in front of the eyes, angry. That ward has since been fully refurbished and there is now a dedicated Renal ward in Crumlin hospital. Maybe someone did actually read all those letters I wrote.

I listened to the stories of organ donation on Liveline during the week, and was yet again reminded of our extraordinary good fortune.

As I type, boy wonder practices how to burp on demand, just like any other six year old boy, delighted at his new found skill.

Cheers,

Ann & Burping Boy Wonder!

School Report

Well, week one is over. It was remarkable in it's ease, order, lack of stress and quite frankly, at the risk of boring you all...... normality!

Rory managed to sit at a desk for incrementally longer periods each day. He won stars for helping others to clean up. He held crayons, coloured pictures, played in the yard, sang songs, and sat with his classmates while they ate their lunch. By Friday, he even licked a Malteeser!

His Special Needs Assistant (SNA) is a qualified nurse with years of experience in a special school, where kids had been fed through every orifice, so boy wonder's NG tube is, dare I say it, nigh on normal to her! She manages him with such ease, grace and good humour, that he is more than happy to comply with her rules. I'm already wondering if she'd consider moving in with us!!

His teacher is warm, charming and a consummate professional. You can see the kids are just hanging on her every word. It's so lovely to watch a nurturing introduction to education. Thankfully things have changed since my days in primary school; where my abiding memory is one of terror.

I re-started my own formal education on Friday. It was quite a flashback walking round the campus of Galway university. It's been a very long time since I sat in a classroom. When I looked round at my classmates it was very clear very quickly that I was very much the elder lemon, by a very very long way. It's daunting but exhilarating.

My brain shrinking, lobe lumping, temple throbbing form filling exercise paid off as I am now the proud recipient of higher education grant. This affords me a second chance to rebuild a working life, for which I am extremely grateful.

This year will be busy, we'll be under pressure, but it'll be a pressure of our own choosing.

Cheers,

Ann

Milestone Mania

His enthusiasm caught me off guard. I had grown accustomed to his refusals. His default negative responses when faced with any mention of the word school. "Bye Bye School" had been the catch phrase of the last few weeks. Rory's like that though, he just says no to everything; just in case.

This morning when I crept in to give him is 7.30am feed and meds, he was still bundled under the blankets snuggling up to bear. I worked away at his tube, able to carry on without disturbing him. His eyes opened, just a crack, he took in the light grey morning sneaking in between the curtains. He sat up, and announced, "I'm going to school today". This was a promising start. I thought it best not to rush him so I let him have a little lie in, a few moments to contemplate his new educational fate.

We busied ourselves with the usual morning routine, uniforms were donned, toast was crunched and caffeine was administered in strong doses to the grown ups.

His regulation grey trousers were proffered, and accepted, along with the grey shirt and school jumper, which he had previously deemed to be too 'scratchy'. All were put on without so much as grunt of protest.

I had expected, if not an all out battle, at the very least some very vocal objection, none were forthcoming. He was positively jovial at the thought of the uniform. He completely blind sided me, with his cheerful acquiescence. The lump in my throat came on very suddenly and before I could swallow it down, the tell-tale brimming of the lower eyelids began. I could feel a full scale wobble coming on. It seemed completely disproportionate to the situation as Captain Sensible, just popped on his shoes and asked for his Madagascar school bag. Fair enough, the kid was going to play it cool!

We snapped the obligatory photos, the kids chuckled and off we went.

Simple as that.

The entry to the class was equally low key. He sauntered in like he owned the joint. Charmed his teacher and Special Needs Assistant.

"Slan, Chickenlicken, see ya later" was the last I heard as I rushed out the door - the fear of making a complete show of myself was now even more acute. I had one aim, get past the school gate without making eye contact with any other parent.

I hadn't allowed myself to imagine this day, it seemed far too presumptuous. Now that it's here; all nonchalance and normal, I don't quite know what to do with myself!

It has taken us six years to come from this :















To this :












Sometimes the enormity of normal just knocks the stuffing out of me!

Cheers,

Ann

The Big Six

I can't believe it's six whole years since you blasted into our lives full of fire and fun. You arrived with such a love of life, clenched, vice like, in your tiny fists. Now your hands are bigger - you can pack more in.

Happy 6th birthday boy wonder, long may you continue to amaze us.

Cheers,
Ann

P P S Anyone?

Can anyone tell me what exactly a PPS (Personal Public Service) number is good for? I have had cause to ponder this a lot lately. To me it seems like a quirky little Irishism, like the way you might be asked what your mother's maiden name is, or where your people might be from.

Public servants seem to either worship it or ignore it. The neat box designed to hold those hallowed digits seems to blink like a talisman for every civil servant in the land. But what exactly do they do with it?

I, of course, am far too literal and logical to ever fathom the depths of the mandarin mind. The twists and turns of those firing synapses when faced with official form filling completely bypass my sub civil servant brain.

Let me illustrate my point. I am a full-time carer, in receipt of carer's allowance; a social welfare payment which is means tested. Therefore, my means are below a certain threshold.
That's all quite straightforward. If you look up my PPS number on 'the system' it well tell you this.

I have recently decided to return to part time study. I figured I should up-skill in preparation for the day when my carer's duties reduce. I could then re-enter the work force, and maybe pay some taxes. I waded through an ocean of literature on entitlements, what one could and couldn't do in my situation. I made numerous phone calls to the nice people in the carer's allowance section of the the Dept. of Social and Family Affairs. I followed their instructions to the letter. I was officially sanctioned to apply for a Higher Education Grant. I receive the form, and am told, I have to be means tested again. But what about my PPS number? Surely it will give you all the information required? If the good people in the carer's allowance section are deemed competent enough to means test for social welfare entitlements, could we not save a whole other mountain of paper and just, you know, take their word for it?

Absolutely not! They are a completely different section of the public service, a whole new means test is essential.

So I fill out the form, queue for an hour in the dole office, taking up time that could be spent processing the many new claims, they look up my PPS number on 'the system'. It confirms my income threshold and that I am indeed a full-time carer, married with two dependent children. They then stamp the lovely pink form which has been printed by those nice people in the Higher Education Grant office and return it to me.

I then go and queue for my long form birth cert. It costs me 10 Euro. Does my PPS number not tell what age I am and that I was born in Galway some time towards the latter half of the last century? Obviously not, because the nice man in the register of births office spent quite a bit of time looking up my details on 'the system', of course this may not have been the same system.

Then the other kidney gets dragged into the fray, because I have to prove that he was mad enough to marry me 11 years ago, and that we have been living together at the same address for at least the last 3 years. He also needs to 'fess up again to how much he earns, which you know, we already did when I applied for the carers allowance. Then he needs to sign the nice pink form, to prove, well I don't know what exactly. That I have his permission to go back to education?

So then, after a week of queuing in offices and collecting various coloured forms, I bring them all to the nice man in the Higher Education Grants office. He then photocopies all my documents, stamps them, returns the originals, asks for some more evidence in paper form, and sends me on my way. Couldn't he have looked up all of this on my PPS, I am in 'the system' you know? No, they need paper proof!

I had just about recovered from this when, in a rather foolhardy gesture, I now realise, I rang the form E112 people. You know that office that eventually let us go to London to the feeding assessment clinic?It turns out she also needs a form, except this one is white, not pink.And guess what?She needs to means test us! I sheepishly suggested that, since I was in receipt of social welfare which was plain for all to see when they looked up my PPS number on 'the system', that maybe we could forgo the repeat means test. No she needed paper proof!

Am I missing something here? You see, from where I'm standing this seems like the most extraordinary waste of the little gem that could be the PPS number.

If I was a PPS number; I would be Pissed off, Put out and Sulking at this stage!

Cheers,
Ann

Hope of Peace

An old friend took his own life yesterday. As the shrapnel of his loss ricochets around his family and friends, it makes me think; there, but for the grace of God, go all of us.

I wish him the peace that so eluded him in this life. I hope he now feels safe.

I remembered this Seamus Heaney poem called The Rescue, it made me think of all of those who tried so hard to save him.

In the drifts of sleep I came upon you
Buried to your waist in snow.
You reached your arms out: I came to
Like water in a dream of thaw.


Safe journey home.

London Calling

I don't quite know where to begin, such has been the level of activity in our hive of late. You may remember I mentioned a feeding assessment team in London. The very sensible developmental paediatrician in Galway had offered to refer us there last November. All very straight forward you might think. Yes very straight forward indeed. As with everything associated with the HSE, it took two visits 4 months apart, approx 662 phone calls, a small forest worth of paper work, 5 hours of misinformation, a bottle of gin (- mine -medicinal ), a very near urge to take up smoking after 9 years of abstinence, and a partridge in a pear tree to actually make it all happen.

A word to the wise here, if ever you are considering dealing with long term illness and the HSE, please, please go into training. Some ex-special forces type boot camp, with some serious 'what to do if you get captured in the desert by the other side' type psychological expertise thrown in. Without it, I fear you may crack at the first hurdle. As I have been doing HSE time for almost 6 years now, my energy is prone to the odd dip into despair. At just one such trough, the bloodhounds in Temple St, came charging down the hill to my aid. They got on the phone, they set up a rota, they badgered, they pestered, pleaded and I dare say even threatened until one day 3 weeks ago, an appointment was extracted at metaphorical gun point. It left me speechless, a rarity for me I can assure you.

We sprang into action, a scramble for the dog eared London A to Z. Pins were stuck in the Tube map, cross referencing address books to see who would be kind enough to put us up for the night. A plan percolated quite quickly. The other kidney was up to his eyes with work so another grown up had to be found to help with the journey. Auntie Mags, yet again stepped fearlessly up to the plate. (One of these days she's going to wise up; and we'll be in big trouble.)

So, on Tuesday, off we went, the 3 of us, on our adventure to see the nice man who was going to talk to Rory about eating with his mouth. Rory agreed to come along but was only going to give this nice man, a very brief moment of his time. Eating with his mouth, while still a hot topic of debate in our house, is paid only, lip service, by Rory!

He handled the journey with aplomb - a seasoned air traveler, the plane held little fascination even though it had jet engines and was actually leaving the country. This was nothing compared to the train that whisked us from the airport. It had conductors in uniform and a whistle at every station; now that was the epitome of cool.

I watched with wonder as he took all of this new environment in his stride, only complaining when we weren't seeing the nice man immediately we landed, as he was in a hurry to get back home.

We got to see the nice man, a gastroenterologist, and his team, a speech therapist, clinical psychologist and a dietitian, at midday on Wed. Rory showed his usual cool, interrupting the proceedings only occasionally to insist that we go to the airport, but generally charming the entire room.

I don't really know what I expected from the visit, I knew in my heart there was no magic bullet for this situation. I did wonder though, if there was something we hadn't tried. I also had very precise questions about Rory's motivation to eat and his ability to recognise hunger. It was really refreshing and comforting to sit in a room with people who see kids like Rory every day. They made no assumptions, no tut tutting, no; I can't classify him, so I should really concentrate on what he can't do instead of what he has achieved. None of the usual; I have no barometer with which to measure, so I'll just go and use the worst case scenario scale, the default setting.

They just agreed, concurred that yes this was all totally normal given his experience. They marvelled at what he has achieved. They gave some very helpful advice, explained some of the probable psychological processes going on for him right now and praised us all in how far we'd come. It was quite amazing really, they had so much faith in Rory, I was almost taken aback. I'm so used to having his shortcomings pointed out by therapists. They just confirmed my gut feelings - let him explore the world, let him get used to feeling well, and most importantly let him lead us.

I had been giving myself such a hard time that I hadn't been consistently working with food in a very structured manner. They understood the difficulties involved and suggested we work on the fly, choosing only activities that he enjoyed. No forcing, no reward system, no passivity. He has to learn to experience and enjoy tastes for himself, not to please someone else. It makes so much sense, I had always felt this but I was a lone voice here in the West.

Very interestingly, in light of last year's Enable Ireland fiasco, the gastroenterologist agreed that any investigations into his ability to swallow are pointless at this stage. We have no evidence to suggest there is a problem, and testing would be hugely traumatic. If you're reading this; Miss crazy lady speech therapist; can I just say, in as smug a tone as I can convey in writing?
I told you so!

I just hope that you are not still working with vulnerable kids, because it has taken me exactly one year, almost to the day, to prove the irrevocable damage you could have done to my son.

Next time you try to bully a parent, just remember you are only a Google search away from being found out.

You have been warned...

Cheers,
Ann