Hostage to Fortune

The problem with having a child who leaks is the inevitable laundry mountain. Daily drips require frequent school uniform changes, and nocturnal emanations contribute to damp bed linen filling the large laundry basket with alarming frequency. The only course of action for a relentless laundry pile is a reliable, out-sized capacity washing machine. I recently (and now in hindsight I realise - somewhat foolishly) openly commended the loyalty of my trusty Zanussi. 'The best thing ever to come into the house' I pontificated to a friend over coffee. Clearly, these were the proud words of a desperate housewife heading for a fall.

The following morning, I innocently went to release the previous night's bedding from the Zanussi's cavernous 8kg drum. I was met by a resolute 'Error 666' message and a door which had been seized shut in protest; my bed linen taken hostage and my wits tested. Being rather slow of a morning, it took me a few foggy moments to work out what was happening. The reality of life without a washing machine was too terrible to contemplate.

At first the repair man seemed positive, there were some signs of life "she's a lovely model alright and the motor looks like it was installed yesterday, when d'ya buy her love?" I thought, initially anyway, this was grounds for hope. With the elastic quality of time playing tricks on me again, I was unable to pinpoint the date of purchase with any degree of accuracy. However, I did remember that I had paid for it in Punts. With this, his brow furrowed and his left eyebrow twitched vertically " I see, so she's a pre-Euro model then is she? That might make the parts hard to come by" Optimism was ebbing from my every pore at this stage. We were facing yet again, another agonising wait on a transplant list. Our only chance was a fruitful harvest from some other household's now deceased pre-Euro model, with the extra large drum and the 1200 spin. He showed me the burn marks on the circuit board, the last load of heavy sheets apparently dealing the coup de grace to this once noble appliance of science.

And so we waited - and though God knows we had experience, it didn't make it any easier. I calculated the exact tipping point where my expensive trips to the launderette were going to exceed the cost of a new machine. Boy wonder was leaking just as fast as my wallet, this couldn't go on. I was on first name terms with the staff in three local launderettes - not a good sign.

Last Wednesday, we bit the bullet, and coughed up 420 Euro for a replacement. It's the large drum you see, you pay through the nose for the extra capacity. I may have to put a claim on boy wonder's future earnings, perhaps a small dividend from his Communion money in 2013?

Cheers,

Ann

To Pee Or Not To Pee

To pee, or not to pee: that is the question:

Whether ‘tis nobler in the pipes to suffer

The slings and arrows of dodgy plumbing

Or to take a scalpel against the seized u-bends

And by a nip and tuck mend them? To plumb: to leak

No more; and by a surgery to say we end

The heart-ache and the thousand wet nappies

That we changeth daily, ‘tis a consummation

Devoutly to be wish’d.

Yesterday, after many false starts, we met with the surgeon in charge of Rory's future plumbing. There's much to consider. He's got some developmental ground to make up before we can even consider fitting him with a new run-off pipe. It's a lot to take on board. Is it wrong to be relieved that the surgery is on the long finger? I couldn't cope with another major theatre episode.

With sincere apologies to Mr. Shakespeare, but I if were indulged, I fear you may get the full belt of a very long soliloquy. I'll spare you the pain and go instead to research the latest in juvenile plumbing.

Anyone got a secondhand copy of that revered tome: Bladder Augmentation for Beginners ?

Cheers,

Ann

Dear Make A Wish

Dear Make A Wish,

A thank you letter seems too inadequate to express what I want to convey. You have not only sent us on the holiday of a lifetime, but you have also opened a door to a world of possibilities sealed shut for so long, that we had given up trying to pick the lock.

Let me try to list some of the joys you have bestowed upon our family: thank you for giving Rory the chance to stand up in a crowded Aer Lingus Paris-bound flight and instruct a whole plane load of passengers in his best school teacher voice, that he wanted ' Gach duine isteach sa line' so that we may disembark in an orderly fashion. Thank you for allowing Jess to walk up to French immigration officers and show her passport like a pro, while telling them to get a move on as time was ticking on her three day Euro Disney pass. Thank you for that wonderfully kind driver who met us at the airport, all breathless with enthusiasm for the Disney delights awaiting boy wonder and his big sister.

Thank you for the hotel; sparkling like a New York department store on Christmas eve, where we ate pizzas shaped like Mickey Mouse and splashed in a pool shaped like a ship. Thank you for giving our kids the chance to giggle 'till midnight and order room service like pampered celebs. Thank you for the magic of three whirlwind days of wide-eyed wonder surrounded by Goofy, Mickey, Minnie and friends. Thank you for a Monster's Inc Mike toy, discovered in the back of the gift shop after years of searching, which by the way, led to an emotional reunion with Sully back in Galway. Thank you for the glee of the Peter Pan ride, the wow of the Studio, the twinkle of the lights, the fairy dust and the kindness of strangers.

You have broken our travel taboo, we have found our lost courage and are now ready to take on the world. We have started to plan again, you have no idea what that means to a family who, for six years, have been locked into their own high tech medical world of hospital visits and sleepless nights.

Our wish was for a normal life but you gave us the world.

Thank you,

Boy Wonder and family

Merry Christmas

Merry Christmas and a very happy New Year from Boy wonder, Jess, Chicken Lickin and the other kidney!

All My Birthdays and Christmases!

I'm still in shock and maybe it's because I didn't see it with my own eyes, so I still can't quite believe it. But I am more than elated to announce that boy wonder ate (yes folks you read right, 'ate' as in consumed via his own mouth)... five half tea spoons of petit filou yogurt at school today!

This may be a flash in the pan (or in this case the 'yogurt pot') but it could also be the start of something truly miraculous. I don't dare to hope...

Now if that doesn't cheer you up, I don't know what will.

Cheers

Ann

The Translator Resigns

Well, in the titanic battle that is Barrett vs The services: round # 603 went to Rory! He has just been approved for 3 resource teaching hours a week. It only took three months, 60 phone calls, a small woodland dell worth of paper, a large lump of expletives and a crash course in relaxation techniques. We were lucky this time to escape with only minor bruising and some superficial wounds.

The outcome of Barrett vs Crumlin Hospital is less clear however. A week after my last post, and completely out of the blue, we received another letter reverting our appointment back from Jan. 27 to the original date - Nov. 18. Confused? I hear ya! Needless to say, the other kidney had re-arranged work and could no longer make it on Nov 18; the new correspondence only giving us 48 hours' notice. So, we will now re-revert (if you follow me) to the January appointment. I'm feeling both battered and baffled.

Another notable notch in our battle belt was recorded last week; it appears our services have been transferred out of Enable Ireland. Steady on! It's early days, and I fully expect a mega misunderstanding before we so much as get within a whimper of another ologist, but it's these little victories that get me out of bed on these dark, damp mornings!

If and when, a therapist or ologist appears out of the murky mist of the HSE West, trust me, you'll be the first to hear about it!

Translation? I give up!

Cheers,

Ann

Reasons to be Grateful

I can't believe it's two years since this day; and this one. The anniversary of the transplant that kicked off this blog is being celebrated in style in our house. To all of you who have walked this road with us, we say: thank you, from the bottom of our remaining internal organs!

Please know that you have played a fundamental role in our survival and success. So raise a glass to organ donors everywhere, but in this week of rememberence, let us also think of those who have not had our good fortune.

Thank you for sticking with us: it has made a really big difference in our lives.

Cheers, (she said raising her glass..)

Ann