A place to shine

The little round face pressed to the windowClings to my heart so tightlyA piece of me can’t help but go with him.Trusting brown eyes. Betrayed by separation. Every day I send him to the depths of Hell,Where every tiny challenge is another mountain to climb.Kind smiles greet him but he’s still afraid.He can’t trust, can’t…

Connecting while disconnected

The shadows float past me, through me, beside me; They look for me, speak to me, try to connect with me; I’m afraid if I touch them they’ll turn back to air. I know them, I want them, but there’s no way to get to them; The fog that surrounds me demands I stay here….

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…

She’s so pretty

A comment that shouldn’t offend, that made me want to simultaneously cry and hit the woman in the face: ‘She’s so pretty!’. I had been shopping with my mum, buying things for my kids and something for tea. I wheeled myself to the till, put my things on the belt, then paid using the card…

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…

The curl

Golden curls twist around my fingers Slipping through the gaps. Light touches them softly. Gravity tries to pull them down but up bounce the curls regardless. She turns to face me, Framed by golden light, Glowing, loving, trusting. I pin the image down, tracing every detail, Locking it safely away. These curls have magic in…

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…

Wading strong

One by one bricks come crashing down, Smashing to a thousand pieces. The rubble climbs higher, Grasping at my knees, Pulling me down into the dusty depths.  My strength falters but does not fail.  I wade on through the chaos, Leaving trails behind me, Protecting those who follow.  I show them the way,  Careful and…

Mindfulness: the holy raisin

Picture the scene: 15 adults with varying conditions and emotional difficulties sitting in a circle, intently staring at our designated raisin as we were guided through a meditation intended to bring us into a state of mindfulness. We had examined its shape and texture, considered its aroma and contemplated with anticipation how it may taste….

Thunderstorms and choices

Thunderstorms come into our lives and turn them upside down. Everyone gets them; relationship breakdowns, injuries, illness, losing a job, money worries, the list is endless. There isn’t much you can do when they decide to hit, especially if comes in the form of disability or illness. Even if you have done something to cause…

On the bright side

How can chronic conditions ever be positive? Anyone living with chronic illness or disabilities will have a list of things that affect their lives negatively. It can be more challenging to consider the ways you can actually benefit from these conditions. I get to take my kids on rides down hills clinging on to the…