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…

Happy 6th Birthday Happy Little Hugh


From here: 



Through 6 years of sleepless nights,
Through 6 years of God knows how many ambulance rides,
Through 6 years of the kind of worry I could never have dreamed of.

Through 6 years of hospital admissions,
Through 6 years of tubes and monitors and alarms
Through 6 years of tears and terror and fear.

There were 6 years of laughter
There were 6 years of joy,
There were 6 years of happiness,
And 6 years of love.


For every time I have cried, I have laughed a thousand times more.
For every second of fear I felt, you have given me an hour of joy.


Son, 
I love you.
All the way to the moon and the stars and all the way back again.

To here: 


     Happy 6th birthday my crazy haired, morning hating, pink balloon loving, Happy Little Hugh xxx

Comments

  1. So lovely and so true for my daughter too. I hope that Hugh had a very happy birthday xxx

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  2. My daughter too has genetic autosomal recessive microcephaly, hypotonia and very severe intractible epilepsy, she has never walked and never talked, she wears nappies 24/7, she has a gastrostomy button and a Nissen Fundoplication, she is 23 years old now, just starting out on the ketogenic diet journey....all will be given by gastrostomy 100%....KetoCal ready made feeds. I do hope Hugh enjoyed his 6th Birthday. Lots of Love. XXX

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