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.
Cheers,
Ann & Burping Boy Wonder!
4 comments:
Ann
It's people like you who make change happen. I've no doubt that your time spent in Crumlin helped shape you into the person you are today. I L-O-V-E your fighting spirit.
I thought of you and your family this week and wondered if I'd hear you on the airwaves. It sure made for moving listening!
Do mature students burp on demand too? ;-)
Thanks Steph, I found it very tough listening this week, but incredibly powerful - I only found out that Frank had died on Friday night - It was devastating news - I have been a fan of his work for a very long time. My heart goes out to his family. I just hope that we can maintain the momentum he put in train with his bravery.
It's been a strange bittersweet week here.
Well done to you.
It is a disgrace what goes on at Crumlin.
Thanks Magnumlady, and welcome, I can see from your site that you know all about Crumlin. I'm sorry to see you're getting the well known Crumlin shuffle. It's very stressful. Good luck hope you get to the end of the dance soon!
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