Sunday, 15 March 2009

Let Her Eat Cake Instead.

It's been a long week. I'm tired. Bone tired. My body feels like it has done a few rounds with Mike Tyson. But, mostly my soul, spirit, essence whatever you want to call it, is exhausted. Exhausted in the way that you find yourself mid conversation with well meaning friends and you just want to give up. I don't mean that in a depressed way, I just mean that my story is beginning to to bore me. It's just so tedious, I'm either railing about the mess of our health service or raving about the wonderful kindness of healthcare workers. It's like living in the extreme swings of yin and yang. I can see people around me are bored now too, as their eyes glaze over when I try to explain the next round of bladder work needed for Rory's unorthodox plumbing. It's that, 'please, no more, I thought you were all sorted since the kidney' response that I don't know whether it makes me want to laugh or cry.

I can't bear another suggestion of 'why don't you write to your TD?' when I recount yet another injustice. Just for the record, I've been to, my TD (and some other people's ones also), the press, Mary Harney, Brendan Drumm, Patient Safety in the Dept. of Health, the Ombudsman for Children, the Health and Safety Authority, Mickey Mouse and Elvis Presley. So for, the results have been only neglible. I can already feel all those positive outlook new year's resolutions slipping, and it's only March. I don't want this life, not for me or my family. I don't want us to be defined by a medical condition. I'm sick listening to myself. I just want it to stop.

Fortunately, I'm not so brow beaten that I can't appreciate the glory of a house with two amazing, belly chuckling, throat tickling kids. There's hope for me yet! But, I really do have to work hard at not letting the system wind me up so much. It's incredibly difficult though, when you are your child's only advocate. His condition, forces us at times to make medical decisions which will affect his quality of life for years to come. It's a big responsibility.I don't feel in any way that we may have failed him, quite the contrary, it's just that continuing to ensure the best is utterly exhausting.

I'm taking myself in hand, for the next few days, fun is the only thing on the agenda. I want to laugh those laughs that come up from your toes. I want to walk on the beach with the wind blowing the cobwebs away. I want to drink wine and eat cake till it comes out my ears!

Any takers?



steph said...


But if I puke on your best carpet, will I be forgiven? ;-)

I do empathise. How well I know that feeling of just wanting to be normal, to be able to talk about normal things instead of always having to recount the last medical drama. It does wear you down.

I've learnt to cope by concerning myself only with people who understand my condition. I still get blamed every so often for not keeping others informed but I don't let that bother me as I know that if they really cared, they'd keep themselves informed!

As regards what lies ahead, I say "one step at a time". You have great insight into your own and Rory's needs, and I'm sure that this will work in your favour. Keep strong and keep celebrating life.

In admiration,

AnnB said...

Thanks so much Steph, as always you not only hit the nail on the head, but also manage to raise the spirits in doing so. Please come and puke on our carpet anytime, but you may have to form an orderly queue behind our resident Olympic champion puker though!

steph said...


Here's an interesting article I came across recently in the Irish Times. The HSE would do well to read it too!

Extreme parenting: Parenting Your Chronically-ill Child...

Are you sure your name isn't Sharon Dempsey? ;-)

AnnB said...

Great article, that Steph - really tells it like it is.