Accepting My Child Will Never Walk

I remember reading, a few years back, about someone with cancer feeling inadequate because they weren't running marathons or raising millions of pounds for charity. They were 'just', you know, getting on, turning up for chemo, hoping for the best. I've read too about people who've become depressed (understandably) as the cancer has taken hold; felt like giving up. But those aren't the stories that make the papers; people don't want to read about that. They want INSPIRATION. Defying the odds... That kind of thing. Not just ... Well you know ... The everyday kind of suffering.  
I wondered how it would feel to have cancer and read about the people running 26 miles when you're barely fit to get to the end of your bed. Do you think 'fair play', or do you feel guilty, or unworthy, or maybe that you're just not trying hard enough?
Mind over matter and all that!
Hugh's undiagnosed condition has left his muscles very floppy. He can't walk or si…

How do you tell a four year old?


How do you explain to a four year old what a bag and mask is for?

How do you explain to a four year old why his brother's not breathing?

How do you explain to a four year old why you need to call an ambulance?

What do you say when he asks how long it'll be before you come home?

Sean was probably around two and a half the last time we called an ambulance, three at the most. He'd seen it before, regularly, often, and it never occurred to him to worry. He didn't know any different. Ambulances and oxygen and hospitals had been part of his life for as long as he could remember. 

But we had a reprieve, a break from all that. 

And now he's four and a half. And he knows about emergencies and ambulances- they're taught it at nursery and school. Most children relate to it through things they've seen on TV- Fireman Sam and Balamory. Sean knows more than most.

He knows the paramedics come first in the smaller car. He knows that you have to wait a bit longer for the big ambulance- this one has the bed in. He knows that a bag and mask is to breathe for you and that sometimes Hugh's brain stops telling him to breathe. He knows that the blue lights and sirens mean its an 'emergency' and they can get to hospital faster this way. He knows his mummy has to go with his little brother in the ambulance to keep him company. 

He knows we won't be home tonight.

And he takes all this on the chin as he always has done. But he watches the paramedics closely and asks what they're doing to his brother. He hangs around the bedroom door shifting from foot to foot as they take blood, check temperature, test heart rate and monitor sats. He sees the wires and tubes and masks and blood and needles and strangers surrounding his baby brother and runs back in to watch Tom and Jerry. 

Minutes later he's back. "I'll make a get well card for Hugh mummy" and he gives me a teddy to bring for Hugh.



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