A year from diagnosis

imageI write from Corry’s hospital bedside, where I shed many tears while I watch him sleep off the sedation, keeping his body calm and peaceful.

My pain for him does not subside. It lingers with a dull ache. It weeps even the brightest day. It grows with a desperate longing – a pleading, it grows.
For with the ticking of time I realise the probability of our days being spent together becoming less likely. And with just a passing day it dawns on me that part of him has been stolen away.
Like the sweet, comforting sound of his ‘I love you’ before bed. I will always long to hear him say that another time. I would capture it and never let it fade. The beauty and light of his smile, once a permanent fixture, has now become very tiring, a huge effort, much less seen.

I return to photographs and remind myself of how utterly happy he was. How everything was wonderful in his eyes. My memories serve as a ‘pick me up’ and for a while they bring peace to my heart. But from them also comes the stark reminder of all that has been lost…. In the short space of a year.

A diagnosis of Alexander disease is, to me, nothing short of a curse. The ‘knowing’ what could, what likely will be, has always consumed me until it becomes a reality, and the next stage of fear commences. All lead to an eventuality I longed we would never reach – I still long we will never reach.

I harbour an inconsolable guilt, a grief and a deep sadness which pair with hope, a fierce love and a will to fight every specialist who confirms this reality. To each and every one who tries to take the light from my hands. The intensity and consistency of my feeling is at times too much to bare.

September 28th will mark his 4th year. At this point in time it seems frightfully far away. I would be lying if I said I wasn’t fearful of the road to making it there. It would be a front for me to pretend I don’t question the likelihood of it.
That doesn’t mean I’ve given up on him. That will never be the case. I know that if he can be here today, then he can be here tomorrow and we will continue for as many tomorrow’s as he can push and endure.

I expect no more from him than to do what he can in comfort. I want not for him to struggle on in pain. For now, I just long to be with him, making him as happy and as comfortable as I possibly can. Doing the things he enjoys, with the people we love. Seeing and feeling the wonders around us. A year from diagnosis, this is my intent.