Sunday, 18 December 2011

Ní Féidir Liom - No I Can't

A mixed year is drawing to a close and I can't say I'm sorry - we've had a few battles, with many a triumph mind you, but we're battle weary all the same. 2011 started with a flood, progressed to blocked pipes and rounded off nicely in a dose of pneumonia.

Instead of new year's resolutions I've drawn up, what I like to call my Ní Féidir Liom list. As you may have guessed, I've always been more prone to rant than cant.

Here's a few of my more pressing I-just-can't-and-don't-even-think-of-asking-me rants on the last year:

The Ní Féidir Liom list.

No I can't understand why we as a nation owe money to someone we don't even know - did nobody think to check the signature on the cheque when we signed on the dotted line?

No I can't say I'm surprised that, a year after our last meeting, Enable Ireland still haven't answered our concerns about their breaches of Irish child protection policy. I can say that I'm much relieved that we no longer have to rely on their services for Boy Wonder but I do feel a kind of survivor's guilt for those who still do.

No I can't help being stunned by the kindness of strangers.

No I can't understand the hype surrounding sun-dried tomatoes.

No I can't help but be amazed by the wonderful support and energy we get from teachers and special needs assistants.

No I can't stop smiling every time I watch Boy Wonder singing Karaoke.

No I can't understand why a consultant gets snotty when you respectfully ask for a second medical opinion. I would love an insight on that one!

No I can't wait to get to London's Great Ormond Street Hospital to hear that second opinion.

No I still can't fit into a size 10 jeans - wise up love it's never going to happen!

No I can't thank people enough for their support.

No I can't but hope that 2012 brings us all more good fortune.

Thanks for the company and Happy New Year to you all.



Tuesday, 27 September 2011

Are We There Yet?

It's been a busy few months since I last posted - we've been chasing our tails so much I don't quite know where to start. We're not there yet but we're darn close!

Well firstly, Jess got back from her camp at Barretstown with a nasty chest infection which she then passed on to Rory during our holiday in Connemara. That lingered with him for a while and then his gut started to act up, then it settled down again until suddenly all hell broke loose and we ended up back in Temple Street with pneumonia!

Needless to say the return to school has been disjointed and with that our whole household routine has been even more chaotic than usual. The other kidney and myself are now so wrecked that we are fantasizing about a week in hospital for ourselves just so we can catch up on sleep! We were so out of practice with the whole hospital thing - isn't crazy how quickly you forget? We morphed back into a pair of lightweight first-timers not able to plan even the most simple logistical task of organising after-school activities - I just got the last place in the swimming class by the skin of my teeth and I suspect the woman took pity on me as I was close to tears at that stage, or maybe she feared I might turn feral and make a lunge for her!

Today we're back on track, we've dried our eyes and blown our noses. Boy Wonder did his first full day at school yesterday and then promptly slept for three hours on the couch! We all got into to bed at 8pm and today I feel like I could run the world!

I've been working on a project all summer and it's finally ready for the world; all of you iPhone/iPad users out there check out my new app:
It's a travel guide to Ireland for parents travelling with kids: jam-packed with fun ideas of things to do and visit. It was a labour of love and written from heart but with a large chunk of experience of the survival tactics necessary for long journeys with cars full of the deafening chorus of 'Are we there yet?' emanating from the back seat. I hope you enjoy using it as much as I've enjoyed writing it.


Wednesday, 13 July 2011

Roots and Wings

Yesterday Boy Wonder and I dropped Jess to Barretstown. It was a glorious day, the sun danced through the canopy of trees as we wound our way round the country lanes to Ballymore Eustace, Co. Kildare. The tingle of anticipation for a ten day sibling camp had infected the entire car, we were like a heard of deer on full alert, scanning each gap in the hedges for the first delicious view of the castle gates. I couldn't help noticing that this time she was even more excited at the prospect of going back. A mixture of age and experience perhaps, but I also think the magic of Barretstown had a role to play.

Their philosophy is simple: get kids together, give them loads of love and encouragement then throw in some amazing activities and sit back and watch them blossom. By taking these kids away from the stress of living with a sick brother or sister, this camp allows them to take risks, to take their feet off the brakes and just let loose.

I once read that a parent's job was to provide roots and wings for their child. Childhood illness has uprooted us and clipped our wings at times. We work at it, but it's not always easy. Barretstown allows me to sub-contract some of my parental responsibilities, at least in the short term, until I regain my nerve. These camps have reinstated the devil-may-care licence of her childhood.

Thank you Paul Newman, and your Barretstown Gang, I hope you can see her standing tall, unfurling those powerful wings to their full life-enhancing childhood span: un-clipped and uninhibited.


Monday, 4 April 2011

Organ Donor Awareness Week 2nd - 9th April 2011

It's that time of year again when the donor community fight to bring the issue of organ donation to the top of the busy news and media agenda. You may even have read some very moving personal stories in the Sunday newspapers yesterday. It's an ongoing battle, which although meets with very little resistance, still feels like rolling that boulder up that hill. 2010 was one of the worst years on record for organ donation: there were only 58 deceased organ donors, a 35% drop on 2009 donor levels. 1989 was the first time Ireland broke the 100 kidney transplants in a single year, which considering there were only 178 people on dialysis back then, must have had a huge impact lives of those on the transplant list. Over twenty years later in 2010, there were 1,780 people on dialysis; the 58 deceased organ donations falls far short of this new demand.

There are many reasons for this anomaly, one very obvious cause is the laudable decrease in deaths due to road traffic accidents. Other causes are less tangible - but a recent survey of the rate of donations per hospital around the country seems to indicate a lack of trained staff to broach the subject with grieving next of kin. The new programme for government includes a commitment to the introduction of an opt-out system of organ donation. This system operates on the presumption of consent: everyone is an organ donor unless they have expressly opted out. A controversial system, which is not universally welcomed by the donor community. Many feel the generosity involved in giving permission for organ donation is too enormous for others to merely presume it will be granted. Mark Murphy of the Irish Kidney Association has favoured a required request system such as exists in the US: medical staff are required by law to request permission for organ donation where appropriate. Under this system, the family can still refuse if they believe it was not the express wish of their loved one. Whatever the outcome, the debate is to be welcomed; 1,780 of our friends, family and neighbours have had their lives placed on hold due to chronic kidney failure, we owe it to them to radically increase our incidence of organ donation.

There are two new links on this blog which will give you an insight into life on dialysis and the light donation provides in the vast black hole left by the death of a loved one.

In the meantime you have the power to do something that could save a life: text the word donor to 50050 to receive your donor card or for those of you with posh mobile phones there is an e card available for both android and iPhone through the App Store.


Thursday, 10 March 2011

World Kidney Day

Since it is World Kidney Day today and the issue of organ donation often seems so abstract, I thought I would try to explain the difference that lump of human tissue has made in our lives.
But then I didn't know where to begin, the changes are so radical, yet so utterly normal and all encompassing.

At the most basic level, there was the first golden urine we saw way back in November 2007, shining droplets, each more magical then the last, starting with a steady drip, then swelling to a thirsty flow, like the first shower in the wake of a four-year drought. Even now, over three years later, I still marvel each morning when I'm greeted by half a litre of this extraordinary elixir shining through the plastic shell of his overnight urine-drain bag.

The arrival of this fabulous, glorious liquid means that we no longer rouse our boy at 4.30 am, every Monday, Wednesday and Friday to begin the long haul to Dublin for dialysis. His ability to produce this precious juice means we have thrown away a plethora of anti-hypertension medication, along with a well-used Sphyg and Doppler machine. This much-beloved amber nectar has given him the strength to become a regular schoolboy, to fight with his big sister, to enjoy birthday parties, to get into trouble, to laugh 'till overwhelmed by hiccups; quite simply, it has allowed him to reach the ripe old age of seven and a half.

For Donor Card free text 50050 and please make your wishes known to your loved ones.


Friday, 11 February 2011

Personal and Domestic Plumbing Perturbations

As a month it's been memorable, not in a misty-eyed, rose-tinted glasses mode though; more like a veritable mensis horriblus. It started with the Stephen's-Day thaw, one of those once-in-a-lifetime, extraordinary weather events that saw the temperature soar from a bracing minus seven to a balmy plus eight in the space of 24 hours! Our house being of the Baby Boom generation with all the attendant physical figaries of third age, was perhaps built to withstand such events while in its first flush of youth but not now in its sixties. As with all cantankerous 'auld wans, when placed under such extreme environmental pressure; our house burst a pipe. The water broke through the ceiling just left of Boy Wonder's bed and flowed unimpeded through the house until it had laid waste to three ceilings, one floor, quite a few pieces of furniture and a brand-new space ship which had recently landed courtesy of a very kind gentleman delivering goods from somewhere north of Greenland.

We were homeless but unharmed and in possession of a fully paid-up home insurance policy, it could have been a lot worse we reasoned calmly. Of course it could, I know it could, but six weeks in and still no sign of a moving-home date I have to admit to having a meltdown and to believing in my own self-indulgent, snot-fest that it couldn't possibly, ever be worse than this! I hadn't realised how much my home serves to anchor me in the chaos of the open water of life with a kid with a secondhand kidney. Well at least now I know (note to self: avoid repeat of homelessness at all costs).

As luck would have it, Rory's own plumbing, although considerably younger than that of our humble home, had its own foibles. I believe the technical term for his condition was a 'kink in the pipe'. Probably due to the meteoric rate at which he is growing, this 'kink' needed a lot of investigation and a whole heap of monitoring. The added complication of spending at least one day a week in a hospital on the other side of the country does little to aid the affliction of temporary homelessness.

In the midst of the maelstrom created by staunching the flow in some pipes, while trying to increase the output of others, the HSE saw fit to cancel Boy Wonder's medical card. A mere slip of the pen almost put paid the very costly supply of anti-rejection drugs. As is usual with all things HSE-esque, it took a small non-renewable forest of paperwork, coupled with the intersession of saints, scholars and, I dare say, a near-schizophrenic mother to get it back.

I have greeted the recent arrival of spring with a sense of exhaustion so pervasive that I have been unable to think never mind blog. I'm hoping the stretch in the evenings will loosen the logjam in my brain and allow some light to flow again.