Misfit

Is it just me? Every time I hear or see the phrase ‘Dress like a detective’ (that’s every day this month then, as I’ve been doing the SWAN UK Instagram Challenge), I want to sing it to the tune of ‘Walk like an Egyptian’. No? Just me then. That’s okay, I’m used to not fitting … Continue reading Misfit

Medicine

I thought that schools were getting more secular these days … until every morning of the Easter holidays being woken by my five-year old plaintively asking, ‘Mummy, why did Jesus have to die?’ ‘Why do you ask that darling?’ ‘That’s what it said on the Whiteboard.’ The Whiteboard (capital W intentional) seems to be a … Continue reading Medicine

Bigger, better, bolder

April 29th 2016 is the fourth annual Undiagnosed Children’s Day, and it promises to be bigger than ever. It’s the third UCD since our own undiagnosed child, Benjamin, was born, and only the second since we found out that Undiagnosed Children’s Day and the initiative for undiagnosed children, SWAN UK, existed. A fitting time to … Continue reading Bigger, better, bolder

Sometimes I just don’t know who to call…

To the many professionals involved in my son’s care, Thank you. As you know, Benjamin, in common with most other children with rare, genetic or undiagnosed diseases, has a complex array of physical, medical, mental, behavioural and social problems, arising from an unknown underlying cause. These issues are clearly co-occurring and interrelated, but determining how … Continue reading Sometimes I just don’t know who to call…

The wobble (a post for Undiagnosed Children’s Day)

“He takes such a lot of care.” “He’s so unresponsive.” “It’s thankless. He never gives anything back.” “What does he mean when he cries?” “He never does anything but cry.” “Does he like it when we play with him?” “Can he see me?” “Does he love me?” “Does he know who I am?” “What are … Continue reading The wobble (a post for Undiagnosed Children’s Day)