Being told your child’s about to die.

Almost as soon as I found I would be a father, it seemed my own life, that is to say the part I had been genetically programmed to preserve at all costs had become external- existing for the greater part in the little life being formed over the next nine months that would become my son. The biological imperative to shelter, protect and nurture this tiny, fragile little boy was naturally overwhelming, entirely taking precedence over everything else. Inumerable futures mapped themselves out in the imagintions of both his mother and me as we fancifuly looked past the immediate requirements of feeding and nappy changes to picture him at a particular school, learning to ride his first bike, carrying out a fulfilling career in…..well almost anything. The day the senior neuroligist walked into the instrument filled room with a small crowd of junior doctors to tell us our son, not quite through his first year in the world (he’s now eight) would almost certainly not recover is beyond my capacity to recreate except by way of analogy rather than pure description. The virus attacking his brain had caused irreparable damage, by now the neurologists explanations had become brief, the details a formality, the information irrelevant. It seemed in that instant the world around me had ceased to exist outside of my emediate periphery . I took my partner’s hand to comfort her, anything more would force the imense surge of energy to crack the psycological damn i hurriedly tried to build- to crack, to burst now would unleash a flood of sorrow and pain I was terrified would never end and ultimately consume me completely. Imagine a wall, imeasurably vast and utterly impermiable behind you, right now. It is inescapable, limitless and relentlessly moving forward. This is the adversary. Ahead is the reality that has just exploded in clinical terms and absolute finality. Yet here also is where I will eventualy find strength, that is to say the capacity to contain the fear to a growing extent. It will take years, but endurance is the only defense I have, and by far the strongest weapon I can create will be defiance. To this day no-one knows how he survived, when the iminace of his death was total. Opposition, resistance seemed to pull him up slowly, falteringly from the certainty of his fate. Somehow, even in the Shadow of the epilepsy, cognitive impairment and learning difficulties that followed, this little chap continues to defy expectation, his little light illuminates new paths, different futures.

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….all that remains.

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