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 give our appointment with the gastroenterology department at Great Ormond street hospital a whole shiny post all of its own. We actually saw the consultant on the same day as we had the appointment with the congenital myasthenia team which I wrote
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.