Monday, 10 November 2008

An Anniversary to celebrate with Pride

Hi All,

I must yet again beg your pardon for being such a foul weather blogger - (that's of course, as opposed to being a fair weather friend!)the compulsion to vent on line seems to only strike when I've got bad news. I have resolved to reverse this rather worrying character flaw of mine, and cast my eyes firmly on the sunny side! In the darker days of dialysis I once remarked that I had sustained retina damage from looking on that same sunny side. So that's probably where the last few months of dark blogs came from, a big black sun damage smudge on my retina! Typically, I choose mid winter for my return to sun gazing, as ever I veer towards the triumph of optimism over experience! Will I ever get sense?

I started this bizarre public diary a year ago this week, initially with the purpose of keeping friends and family informed of Rory and Niall's progress as they planned to share a vital organ, in this case a left kidney to be exact. It's very surreal to now realize that on Thurs 13th of November, our son will have been housing his father's left kidney for a whole glorious 12 months. And yes, he is still peeing like a race horse, Rory that is, although now that I think of it, I haven't heard any complaints in that department, from his Dad either.

What a year it has been! I've been trying to reflect in some sort of meaningful way on the last 12 months but all that keeps popping into my addled brain is a searing sense of relief, in the almost 'get out of jail card' sense of the word. It is the primal relief of one who has survived potential catastrophe and can only really truly be expressed by the following phrase : Thank **** it's no longer November 2007!!

Highlights of the last year are many and can all be found in the 'marvel of the mundane' category.Primary among them, must be Rory's first Pee, which has to be one of the most thrilling moments of my life. When your world has been measured out in millilitres of restricted fluid for over 4 years, the sheer joy of watching fluid pour out of a little body for the first time is impossible to describe. This is a boy who could only take 450 ml in 24 hours (and only 400 at week ends), think about it, that's about 4 cups of tea. Now we have a positively cavalier approach to fluid, we're of the get it down ya school of thought in this house - 1500 ml a day and climbing!

And signs by, he's really piling on those kilos. B.K. (otherwise know as Before Kidney chez Barrett) each kilo took at least 12 months to acquire, and boy did we obsess about it. Rory had to be weighed every day sometimes twice a day, to assess his fluid intake - too much and his blood pressure would shoot up, too little and he would be dehydrated. The golden number was always 10kg - the weight he had to achieve to be considered for a transplant. Last year after a year on the list waiting for a kidney, he went into the operation weighing a cool 11kg, last week, he weighed in a 16.5kg, complete with a pot belly and love handles. What a difference a kidney makes.

The battles of the last year were unrelenting and very bloody and we are far from finished with the fight. I don't need to remind you of them, you've walked in my shoes and raged against the HSE horror machine with me. But lets put them aside for this week, it's fitting in this month of November to declare a temporary Armistice. Hostilities will be suspended to enable us to celebrate our achievements in style. So join with us in raising a glass, a prayer, a hope, a light or whatever your heart desires, to the skill and the humanity of that amazing bunch of people in Beaumont and Temple street hospitals who saved our son's life. To that very bunch of people I say, take a bow and bask in warm glow of pride in your excellence.

Let us never forget that goodness exists and miracles do happen.



Kae Verens said...

Excellent! Sounds like nothing will stop him now.

I still hope that you get some sort of apology (or more) for the letter you wrote about last time, but it is great to hear that Rory's going strong and getting stronger.

AnnB said...

I'm really in shock as traffic on the site has just taken off thank you so much for your comments. I've been living in a bubble not knowing where to turn so am still tying to process what's the best kind of action to take. The most important thing is to get the story out there so spread the word please and keep the comments coming. It's such a help!