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…

What a difference a year makes.

A year ago today my wonderful little boy was christened. It was a beautiful, hot, sunny day. Family and close friends came to a lovely little service at the local church and then back to ours for a barbeque. Our garden looked great, courtesy of the flower filled hanging baskets my mum and I (ok mainly my mum) had prepared. A new ball pool and piles of toys kept all the kids entertained while bottles of champagne, jugs and jugs of Pimms and enough beer, wine and spirits to sink a ship, ensured the adults were kept happy too. The men, as always seems to be the case took, charge of the barbeque.  Music blared out and there was a great party atmosphere. Everything you could possibly want to celebrate such a special day. And yet, I was filled with an overwhelming, indescribable sadness.

There's a photo from that day, my eyes fill with tears even thinking of it, of me in the church gazing down at the Hugh in my arms. I don't know what other people see when they look at this photo. A proud mother and her son on his christening day? A beautiful boy in his christening outfit? A mother bursting with love? But I see such sadness. I see a son that doesn't recognise his own mother. I see the realisation that this isn't the child I expected and that something is very wrong. If I'm honest, I see something akin to grief in my eyes. It’s not a photo I look at often. 

That day surrounded by family and friends I began to mourn. The aching sadness inside juxtaposed with the laughter and frivolity. Half way through the day, I took my little boy from his party and put him to bed. And as I watched him sleeping in his cot, I wept.

My son barely looked at me, he didn't respond to the sound of my voice and apart from the fact that he sometimes calmed when I cuddled him, I suspected he genuinely didn't know, or care, who I was. His days and nights were spent sleeping, crying or vomiting and at five months old he was no closer to sitting, rolling or weaning, than a newborn. He showed no interest in his surroundings; people, noises, lights, toys, and it broke my heart that his older brother tried so hard to engage him, to make him smile and he rarely registered he was there.

And what difference does a year make?

It would be lovely to say that a year of appointments had brought us answers, that he'd made tremendous strides in his progress, that my heart no longer ached for the life I thought he'd/ we'd have...

 But I sit and write this by his hospital bed, his 17th hospital admission in nine months. I ponder the meaningless labels attached to him - extremely rare and complex chromosome abnormality, severe global developmental delay, microcephaly, hypotonia, severe visual impairment, severe and difficult to control life threatening epilepsy- and I wonder what the future holds for my beautiful baby. He makes eye contact more often and he smiles more but his progress is hindered by his epilepsy and recurrent illnesses and hospital stays. He first rolled from his back to his front at seven months. Ten months later he can occasionally still do this.

I love him dearly. With an overwhelming, all encompassing love I never imagined possible. I would walk bare foot to the ends of the earth to keep him happy, to keep him safe.

 And yet, my heart still aches. And I wonder, what difference does a year make?