The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

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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