Having a child with special needs affects the whole family.

Having a child with additional needs changes a family.  I think you become more insular as no one can truly understand how much your life has changed.  We are not the same people, same couple, same family as we were before our special boy, Hugh, was born.  Our priorities have changed.  Our needs have changed.  Hell, even our political views have changed.  It’s not all bad though.  Yes, I am beginning to feel isolated from even my closest friends, but in turn, we have grown stronger as a couple, talk more openly and rely on each other more.



My overriding concern has always been though, the effect having a brother with special needs will have on my eldest son, Sean.  He is nearly three and I worry almost as much about his future as I do about his younger brother’s. Will he get bullied for having a brother that is so ‘different’?  Will he feel neglected because his brother demands so much care and attention?  Will he be embarrassed by a brother that can’t walk or talk?  Will he be jealous…

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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