Saturday, 19 September 2009

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.

Ann & Burping Boy Wonder!

Saturday, 5 September 2009

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.