It’s all about Luke

It’s been over a month now since Luke’s diagnosis of epilepsy.  He has always been a lively child to say the least.  The youngest of two children, I always said he never walked; he went straight from crawling to running.  He broke endless toys, smashed a tv by flinging a toy gun at the screen (not out of anger – just because he felt like doing it!), dropped Batman from the balcony to see could he fly, and no Batman cannot fly but yes he now has only one leg!  A day dreamer  – always in his own world; I have questioned his hearing on more than one occasion…but to me he has always been just a typical boy, boisterous and bold in equal measures, and so incredibly funny and generous, he will always share his sweets and wants to be friends with every child he meets.

My mum passed away in 2012 after an 8 month battle with Cancer, it was a catastrophic loss to my whole family.  She had been with me when my daughter was born by emergency caesarean, and an afternoon planned of shopping after a routing antenatal appointment ended up with us in the operating room as Katie was delivered (she had a condition called IUGR), although once she was born she was perfect, small at 5lb 4oz, but perfect.  Mum was my rock, she had been a psychiatric nurse before she had 6 children (I’m the baby!) and so was always a practical, calm and soothing presence – she was always the voice of reason and the one to say it will all be OK.  Although it is nearly 4 years since she passed away, I have felt her loss in the past 6 weeks so deeply, throughout the tough days on this new journey; I have needed her so much and I suppose I feel that in order for me to be sure I’m giving Luke what he needs, I need her to tell me I’m doing OK too.

But she can’t be here to tell me that; one thing I will always remember is a time we were out for lunch and I was giving out about Luke, he was probably around two.  He wouldn’t do anything I asked, always roaring and screaming, tantrums – so independent.  And she said yes it’s hard but you know what he will be the apple of your eye – and I guess 4-5 years later I see it – he’s my pride and joy, my shining light, he makes me smile every day and through the tough days I just need to breathe and trust that I’m doing the best I can and together we will cope, at the minute life is all about Luke, and that’s OK!


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