Parenting through chronic conditions

Parenting is tough. When a new baby arrives they bring happiness and an endless supply of love with them. However, they also bring a whole host of challenges and turn your world upside down. Wave goodbye to sleep, privacy and space when a new bundle of joy arrives on the scene! Parents find a whole…

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….

Tired

‘I’m tired’ I say, moulding my face into a smile. I give the answer that’s easy to hear; The one they can understand. What I really mean is I’m empty,  I have nothing left to give. There’s an elephant sitting upon my chest, Making me pant and heave like I’m drowning in air.  My muscles…

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…

Fire

I can feel the fire rising.  The fist awakes and begins its journey, Reaching up through my body, Searching for the centre of my being.  It grasps my heart,  Squeezing Confining Relentless. The tendrils stretch out experimentally, Looking for an easy way through.  Where will it burn today?  My fingertips blaze like torches. The fire…

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…

Grey matters

I found some words today.  They bobbed to the surface of my grey matter treacle, Glimmering pinprick stars through a cloudy sky.  My thoughts don’t line up the way they used to.  Pathways disrupted, re-discovered, re-directed.  Brain plasticity is my friend, I’m told.  I miss the days the words came alive, Climbing over one another…

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…

Magic chair

I have a magic chair. It makes me invisible, So that people look over me to those walking behind. My chair can take years away, Tricking people into thinking I’m just a child, Unable to think for myself. This chair can be a window, Asking those around to look inside, To make comments, ask questions, stare….

Hyperbaric Oxygen Therapy

I’m sitting in a small room, much like a small submarine. There is a comfy office-style chair waiting for me and a slightly daunting set of tubes dangling from the wall like a large plastic octopus. I’m shown in by a kind lady who tries to answer my questions and reassure me that it won’t…

Arts therapy

I find writing really cathartic. Sometimes I write about things that are bothering me, but it isn’t all about being able to pinpoint a problem or emotion and let it out. Sometimes just the act of expressing something can really relieve built up emotions even if the exact source of the emotion remains a mystery. That’s…

Children who are carers

As a parent, I want my children to be children, not mini adults. As a disabled person, I need help with some things. This conflict does not sit easily in my heart. I have three kind, helpful and caring children who each have to contribute to our family in ways that other children their age…