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…

An Act of Kindness

I am, by nature, a bit of a rambler so please bear with me.  It’s a bit of a long-winded story but I think you need a bit of background to understand why this single act of kindness was so important.

The little man has what they call ‘complex care needs’.  In a nutshell it basically means you can’t turn your back on him for a second.  He may be blue and lifeless on your return.  Sorry to be blunt, but that’s the way it is.  No, it’s not nice, but that’s our lives.  That’s what we live with and deal with every day.  Of course it affects us on a day to day basis.  The knowledge that any one of his ‘life threatening seizures’ could be fatal is terrifying.  I would love to say that I don’t let it control me, that I live as normal a life as possible, but the truth is I don’t.

Family weddings, trips to the park, visits to friends and family are all split – one parent leaves the house with the big fella and the other stays at home with the little fella.  Just in case!!!  Not the most normal of lives for the ‘big fella’ but he’s just two and a half and knows no different and we’re doing the best we can.

Last Christmas we were hoping to take the big fella (he was just about turning two) into Town to see the Christmas lights and meet Santa.  Santa, with his real reindeer and fake snow; the German Christmas market with its stalls selling Gluhwein (yay!) and hot dogs.  What Christmas is all about.  Unfortunately, and so typically of all of last winter, the little fella was ill and in hospital.  So the big fella missed out.  Again. 

This year, he is nearly 3.  This year he’ll understand more and appreciate more the joys and delights, the sights, sounds and smells of Christmas.  This year I am determined to get to Town to share it with him.  And I am determined to do this as a family.  I think his Mum, his Dad and his little brother should all be there to share it with him.  However, chances are the little fella will be too ill to make it.  Or it will be too risky to take him out so we need to find an alternative.  But that alternative shouldn’t be either his Mum or his Dad missing out on his first trip to meet Father Christmas. 

Now, strangely enough, babysitters trained in tube feeding, administering Buccal Midazolam, using a bag and mask, giving oxygen and doing basic life support tend to be few and far between!  The respite carer we’d been allocated was reluctant to be alone with the little fella – now considering he works with life threatened and life limited children, this was a bit of a blow to me.  I thought I’d be the one worrying, not him.  And the complex care nurses that we’re waiting for seems to be taking longer than expected, and even then they might not accept us.

So, back to the original point  - excuse the long and winding road to get there – all I really want for Christmas this year is to be able to take the big fella to see Father Christmas. 

On our last visit to the high dependency unit at the local hospital (we spend a LOT of time there), one of the nurses overheard my discussion with a friend about our predicament.  As we were discharged from the ward, she approached us and suggested that if we couldn’t organise for care for the little fella, we should get in touch with her at the hospital and she would babysit at our house while Mr M and I took the big fella to meet Santa!  On her week off!!!  Imagine!  I genuinely cried when she offered.  I hope we won’t need to take her offer and that the little fella will be well enough to come with us, but I know the offer is there and that she meant it.  So this year, come hell or high water, we’ll be visiting Father Christmas in town.  And thanks to a wonderful nurse on HDU for helping to make sure that will happen.