Saturday, 22 February 2014
playing the blame-game
It's been a pretty stressful week. N was admitted to hospital again on Tuesday night with breathing difficulties. She had a nebuliser, oxygen and IV antibiotics and is now home with oral antibiotics. It was relatively traumatic* and since she came out late on Thursday night we have been attempting to chill out a bit and catch up with ourselves. We are now cruising on down towards a few nights at the Childrens' Hospice at Barnstaple next week, for a proper rest.
I am continually touched by the kindness of both friends and strangers when something like this happens; the practical offers of help; the people in the village who saw the ambulance outside and texted to offer help; the text messages that say 'saw your facebook status and we are thinking of you, let us know if there's anything we can do to help'; the friends from far-away who messaged me to say that they can't do anything practical but to expect a delivery of wine in the next few days to try to make up for that a bit**.
It seems to me that all families with a special child experience a profound sense of dislocation when the disability first become apparent. I suppose that it's similar to the way your friendships change when you first have children, but more extreme. People either get it or they don't. They fade out and other people, who do understand your situation, who are perhaps in that situation themselves, fill the empty space. There are people that to begin with, I missed desperately; not their fault that they couldn't take on board that my inability to communicate properly was down to the amount of stress being heaped on our lives.
The blame-game is one that we play daily with our children. From 'was it something I did or didn't do during pregnancy that caused this?' via 'can her system stand an elective general anaesthetic to change the PEG for a button?' to 'am I cleaning the stoma properly?'; from 'should I really have kicked up a fuss like that with the NHS to get her seen earlier?' via forcing her to wear her night-splints when she hates them to 'will school make sure she eats enough?'. I second-guess my way through each day and I simply don't have time in my life for people who don't get that.
Only the most robust of connections with other people survive this furnace that our lives have become; and we value them, because they are what anchor us when the shit hits the fan and everything descends in to chaos.
There is no room for guilt or blame; and all we can do is move forward on the journey and be thankful for the people who have chosen to travel it with us.
* Note my judicious use of understatement there.
** You all know who you are and if you are reading this, thank you.