The appointment
Sometimes in life, no matter how hard you search, you don’t always get the answer you were looking for…
Patients Know Best (apparently)
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,
The waiting room
Being in a hospital waiting room is like being stuck at an airport waiting for a delayed plane, although without the promise of a holiday at the end of it. Dominic and I usually sit and while away the time staring at a small screen, me on Facebook him on the DSi. We're generally happy
The Hardest Post to Share
They say that life changing events change you for the better. But nothing healthy or good has emerged from coming so close to losing Dominic. It has broken me and scarred me. It just made me so very sad, so very scared and so very lonely. But finding my way out and learning to accept that I could never have my ignorance back, that once you have felt the pain of saying goodbye you can never win back the peace that other parents seem to take for granted all around you has become part of my journey. It’s something that has woven itself into the way I see the world, see my family and ultimately see myself. It is part of everything, so it is undoubtedly part of my normal daily life.
A Freak Like You
It's been a strange old week. First I found out that you lovely people have nominated me for an award despite my British reserve and lack of confidence having prevented me from asking anyone to even consider me. I have since added the badge that is meant to encourage you to vote: if you look