On Saturday 13th April 2013 I will be celebrating Undiagnosed Children’s Awareness Day, probably at home, perhaps with an acquired bit of Easter chocolate, but undoubtedly with a huge sense of pride. I guess I don’t talk that much about Dominic (and of course Elliot and Lilia as we know they have a milder form)
The warrior parent. A much used label for a parent with a special needs child who fights the system until they are bruised and bloodied and then still gets up, spits out a loose tooth and goes in for a second round. Some parents wear this label as a badge of pride, and I completely
I have broken my prolonged silence (more on that soon) to share a very special video in honour of feeding tube awareness week. I would be forever grateful if you could find a minute to share it, as ultimately the more people that watch it, the further the message can travel.
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