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…

Loving Equally Does Not Meaning Loving The Same


I love both my sons dearly and equally. 

As I tuck in little H I look at his beautiful face and am filled with such overwhelming love. I caress his cheek and run my hand over his face-the on body sign for good night. I do a mental run though of the appointments and therapies the next day will bring. I check he is positioned correctly, lying symmetrically in the bed. I attach the sats probe to his toes, switch on the monitor and check his oxygen levels and heart rate. I check the angle he is sleeping at is sufficient, adjusting the gradient if his reflux is particularly bad or he is having problems breathing. And I kiss him goodnight. 

Then I go to Cheeky's room. He sleeps soundly, curled up in a ball, often the wrong way round in the bed. I lie my head next to his and listen to him breathe. Calm. Peaceful. He is nearly 4. He loves Ben 10, Disney Cars and Spiderman. He is looking forward to going to school in September. Life is straightforward. Simple. 

I lie with my head next to his, listening to the calming rhythm of his breathing. In and out. In and out. I take in the smell of his freshly washed hair and feel my heart settle, my mind still. Some nights I don't want to leave. This haven. This safe space. This simplicity. I long for the simplicity. 

I kiss him goodnight and return to my room. H's sats monitor flashes in the dim light. I check the figures again before getting into bed. 

I love both my sons wholeheartedly. 

And equally. 

And differently.

Comments

  1. The different feelings we have for our disabled & non-disabled children are complicated aren't they? - but, as you say, we love them equally. Thanks for highlighting such a valid issue. They sound like very lucky boys to have a mum like you.

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