Ok, so I’ll admit, I generally think that Facebook is a platform for us to all lie to each other and perhaps even to ourselves too. The funny incident with the duct tape and the baby sitter makes for a great update, but admit it, at the time it was just plain embarrassing, and perhaps a little unnerving. I think forcing ourselves to see the funny or ridiculous side of our human failings is a trait to be applauded though, all too often we take ourselves far too seriously, and if it takes a Facebook status to make us come up with another, more positive view of a situation, then it’s no bad thing, even if our sole purpose is merely to try and convince the world that we are funnier, smarter and have a better social life than any of our friends.
By the time you read this post, I will have packed a suitcase, boarded a fast train to London and relocated the few things that Dominic and I can survive with into a room somewhere in the heart of Great Ormond Street hospital. I have been preparing to separate myself from my family and
Communication works for those who work at it. John Powell I decided to dedicate a separate post solely to our experience at the gastroenterology department in Great Ormond Street hospital, as I didn’t want the valuable information to be overshadowed by my detailed account of the appointment with the congenital myasthenia team. During our visit,
Yes it is devastating to hear the doctors tell you that your child has a syndrome, a disease, an illness, but, believe it or not, for some it comes as a relief after a long journey where not knowing has been far harder. A diagnosis, especially for parents who were unaware that there was a problem, can change a family’s hopes, expectations and goals in an instant. With a simple word, parents become part of a community of people who have had the same conversation with their child’s doctor. A diagnosis makes you have a connection, it gives you a reference point, a place to start. You get handed a name of a ‘thing’ to fight, hell if nothing else at least it gives you a neat summary to stick on the endless forms you have to fill in.
Home is where the heart is, or so the general consensus seems to be. In many ways I feel like I have come home now, everything has regained some kind of order, the cobwebs no longer have the larger share of the house and there has been a lot of culling of clothes and toys.