Words from the Western Front

I've just watched the BBC 2 programme on Great Ormond Street Children's Hostpital Renal Unit. I had forgotten how hard it was when Boy Wonder was a tiny baby. I had blocked out all those life and death moments, the meetings in those tiny rooms with medical teams, the surgeries, the ventilation. I had almost forgotten, shame on me, that I have the extraordinary good fortune to share my life with a miracle.

I was so caught up in a mind-numbing stateless stand-off with the hard-hearted entity with the wonderfully ironic moniker: 'The HSE Primary Continuing and Community Care Unit'. They nearly took my sense of wonder away and more fool me, I nearly let them.

Cheers,

Ann

To Win Just Once

It's been a rough week. Community Don't Care are battering us yet again. I'm tired. I'm sleep deprived. I'm fed up and really not very user friendly at the moment. My lifeline has been cut. One night a week we had a nurse look after Rory. It meant a full night's sleep. A glass of wine. A life. Three weeks ago, the nurses stopped coming, just like that. No word. No communication, nothing. The HSE informed the nurses their services were no longer needed. Nobody called us. Nobody asked if Rory's situation had changed. Nothing.

I know I need to get my fighting boots on but my soul is tired. I'm battle worn and low on victories. I'm out of words so I'll let this song say it, while I re-charge my flat battery and dust off my flak jacket.

Cheers,

Ann