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…

Turning Four and Starting School

This time four years ago I was gearing up for Hugh's imminent arrival. The benefit of being induced early (due to gestational diabetes) is that you can plan and prepare in advance. Admittedly I didn't expect Hugh to take three long days to finally show himself, but I'd organised childcare for Sean while I was in hospital and expected the whole process to go relatively smoothly. Hugh though, as I've since learnt, doesn't do anything the way it's expected, so after a short, but scary, stint in intensive care, then the high dependency unit and then the special care unit, he came home to meet his big brother.

Like most people, I didn't commit when asked 'are you hoping for a boy or a girl?', "so long as its healthy, I don't mind", I'd reply. But if pushed, I'd usually confess that since the two would be just 14 months apart, then another boy would be nice. I imagined two brothers, so close in age, chasing each other, playing football together and fighting. I pictured myself separating wrestling toddlers and settling disputes over cars. I imagined a house of noise and chaos during the day and of best friends in bunk beds, giggling and conspiring in the darkness at night.

Birthdays, like many annual events, seem to encourage you to look back and reflect.  I've approached Hugh's birthdays with a mixture of feelings over the years; always thankful and relieved to have reached another milestone, but also acutely aware of the ever widening gap between him and his peers. 

Since September, Hugh's fourth birthday has been a shadow lurking in my mind. The first sinking feeling came with the arrival of the school selection forms. I'd received them the previous September for Sean and filled in my school preference online, excitedly sharing the process with Sean. Hugh's forms lay ignored for months, until I finally threw them in the bin. 

I remember clearly the time I was told Hugh would need to go to a special school. He was only about a year old then. I was devastated- I'd really hoped he'd catch up enough to go to school with support. I have nothing against special schools, I think they are the right environment for many children, but I doubt anyone ever hopes for that for their child. I am delighted with Hugh's school (he's started in the nursery part time) and I know it is the best place for him, but with his fourth birthday approaching, I can't help but imagine what might have been.

Hugh's not a baby or a toddler any more. He's a four year old, preparing to go to school in September. But Hugh's not running around the playground while he waits to pick his brother up, he's not impatient to start 'big school' like Sean. It's not him being chased by his brother and his mates in the morning. They won't be discussing teachers or school dinners or playing together at lunch. Hugh won't follow Sean around the playground, delighted to be friends with the big boys. Sean's outgrown school uniforms won't have a change of name-label this summer and a quick shift to Hugh's wardrobe. 

This time last year, I took Sean to celebrate mass with the then-Reception class. He watched in wonder as the older children said their prayers and I told him that in a few short months he'd be just like them. He couldn't wait to start and was delighted with his little picture of St. Joseph, the patron saint of the class, that he was given at the end of mass. Today Hugh and I watched Sean reading in his class mass. They gave out little pictures of St. Joseph to all the children due to start reception in September, just as they had the year before. These would have been Hugh's class mates. Some of them might have been his best friends. 

But, at the end of mass, instead of waiting to chat to the other parents and meet the children he'd be starting school with, I took Hugh, and his little picture of St Joseph, to the special school around the corner.

Comments

  1. Huge hugs: I always remember the day I got a letter offering Smiley a place in the same secondary school as her big sister. It hurt xx

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  2. Emma, I may not be walking in your shoes but I feel the loss of the 'life imagined' lots of love hun xxx

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