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…

I'll have the usual please...

In the first winter of Hugh's life, he became a regular visitor to the children's ward. I remember during one of those early admissions talking to the nurse about his repeated visits and wondering if this was a pattern likely to continue. He'd had every illness going from chest infections and infected eczema to the more obscure cellulitis and swine flu. If you could catch it, Hugh would get it and he decided to further complicate matters by giving up breathing just before any illness would strike. Or while he was teething. Or indeed for no apparent reason at all. We later discovered this trick of going blue at inopportune moments was epilepsy. It certainly made winter *ahem* interesting and acquainted us with the West Midland's Ambulance Service. It also meant we had our own bed reserved at Hotel Heartlands- a nice little ensuite, with views across the car park. The nurse confirmed my worst fears- that some children were season ticket holders and became familiar faces on the ward.

Over the following year, I met a few of the regulars. You could instantly spot them- they were on first name terms with the nurses and helped themselves to bedding from the linen cupboard. They used medical sounding words and spoke knowledgeably and confidently to the Drs, no shuffling shyly and deferring to the Drs clearly superior knowledge for them! I watched in fear and awe as they handled huge syringes and pressed buttons on monitors with rapidly blinking lights and important sounding alarms. 

Hugh quickly secured his status as a regular with weekly, sometimes twice weekly admissions. He was presented with his loyalty card, granting open access to the ward. I was given a crash course in paediatric medicine, a learn while you work apprenticeship (though it was pretty poorly paid) supplemented by tutorials with Dr. Google. Now I'm the one asking for meds from the CD cupboard, with a collection of syringes on the bedside table, checking the oxygen at the bed stations and adjusting the settings on the SATs monitors. Other patients look on in wonder as Hugh is greeted like an old friend with exclaims of, 'He's grown so much' and nurses from neighbouring wards popping by to say hello, like he's a local celebrity. The parents glance slyly across as I attach purple tubes to beeping machines to hungry tummys. They turn away uncomfortable and embarrassed as I set off angry alarms and nurses and doctors come running with shouts of 'crash call' and I'm pushed to the side while near- strangers try to save my son's life.  They stroke the hands and faces of their own precious babies and silently thank God for *just* a broken leg and *only* a chest infection. 

And us regulars, war weary and battled scarred, smile a knowing smile at each other, a sad smile that says we've been there; we'll be back.

It has its upsides being a regular though : they know how you take your tea! 


Although rather irritatingly, they do still call me 'mum'.

Comments

  1. Those fits are a damn nuisance, coming and going as they please! I pray that one day the doctors will find the correct potion and life will be easier for all of you. xx

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