My beautiful boy

I see you struggling with the world around you, I watch the fear cross your beautiful face, I hold you when the panic sets in, Unable to take its weight. I wish I could climb inside your bubble, To see the world through your eyes for a moment, To understand why you feel how you…

Balancing spoons

I first read Christine Miserandino’s ‘spoon theory’ about two years ago, when I was trying to understand my own condition and the limitations it brought. As with many people with chronic illness, I identified with it immediately and have since thought in terms of ‘spoons’ frequently. In essence, the theory describes how the capacity to…

Just a minute

Just give me a minute… A child turns away, knowing mummy is too busy to play again today.  I only spoke to him a minute ago… The last shared words echo endlessly, But the conversation no longer matters.  I’ll only be a minute… The disabled man leaves the car park empty-handed. He can’t reach the…

I got this!

I try to think of the positives my disability brings as well as the negatives. There are some. Honest. Today I heard my youngest little one muttering to herself as she climbed up a particularly difficult part of the playground. She was holding onto a rope, whilst climbing up a steep slope, using half-logs to…

Teenagers and disabled parents

Teenagers are an alien species at the best of times but when managing chronic illness alongside guiding these strange creatures towards adulthood things can get much more complicated. My eldest is about to turn 15. She’s beautiful, intelligent, stubborn and egotistical. She knows everything and is perfectly content in the knowledge that she is absolutely…