I Believe In
Entry by: Huntersmum
1st April 2016
Progressive. Life-limiting.
As I read the words, they robbed me of everything. It couldn’t be true, it couldn’t be happening to us.
For weeks afterwards I could think of nothing else. Life flowed around me, as a river parts around a rock only to flow either side and meet again. I was the rock - stupid, lumpen, beaten. Whilst I went about ordinary activities - shopping at the supermarket, doing the school run, or simply bringing in the milk from the doorstep - those words would suddenly hit me again. My son has an incurable condition. Mucopolysaccharidosis. Progressive. Life-limiting.
It is difficult to avoid cliches sometimes. ‘The words knocked the breath from my body’ or ‘It felt like a punch to the guts’ are clumsy and unsatisfying. Yet this is what I was living every hour. My days were punctuated by tears; evenings spent on the computer, searching for hope. And each morning, the knowledge renewed itself in my brain that moments earlier had been cushioned with sleep. Progressive. Life-limiting.
I found others taking comfort in their faith: God only gives you what you are strong enough to deal with; ours is not to reason why; So-and-so has gained their ‘angel wings’. I would rail at these idiots who could not or would not condemn their cruel deity.
I began to question everything. Why did I not push for a diagnosis earlier? How can I protect his brother, my eldest son? How can I do anything, while I am dissolving, unravelling, drowning?
Yet, gradually, almost without me noticing, the knowledge became easier to bear and I began to find a peace growing within the flurry of appointments and paperwork. And somehow, from somewhere, I found faith again. Not in any God or gods, no. For how could I believe in a capricious being who allowed this terrible situation to happen. My beliefs are more prosaic.
I believe in a few minutes snatched from my busy day to stand outside and lift my face to the sunshine, the daemons chased away by its warmth.
I believe in the power of family that surrounds us with love.
I believe in the square of chocolate melting in my mouth, releasing its dark notes of oak and orange and cloves.
I believe in chunky little arms wrapped round my neck so tightly that it sometimes hurts. But I know it would hurt more if he ever let go.
I believe in the science of the future; viruses engineered to carry treatment through the blood-brain barrier, nanocrystals that can dodge our immune system and target rogue cells.
I believe that there is time enough to reach that future.
I believe in the now.
I believe….
As I read the words, they robbed me of everything. It couldn’t be true, it couldn’t be happening to us.
For weeks afterwards I could think of nothing else. Life flowed around me, as a river parts around a rock only to flow either side and meet again. I was the rock - stupid, lumpen, beaten. Whilst I went about ordinary activities - shopping at the supermarket, doing the school run, or simply bringing in the milk from the doorstep - those words would suddenly hit me again. My son has an incurable condition. Mucopolysaccharidosis. Progressive. Life-limiting.
It is difficult to avoid cliches sometimes. ‘The words knocked the breath from my body’ or ‘It felt like a punch to the guts’ are clumsy and unsatisfying. Yet this is what I was living every hour. My days were punctuated by tears; evenings spent on the computer, searching for hope. And each morning, the knowledge renewed itself in my brain that moments earlier had been cushioned with sleep. Progressive. Life-limiting.
I found others taking comfort in their faith: God only gives you what you are strong enough to deal with; ours is not to reason why; So-and-so has gained their ‘angel wings’. I would rail at these idiots who could not or would not condemn their cruel deity.
I began to question everything. Why did I not push for a diagnosis earlier? How can I protect his brother, my eldest son? How can I do anything, while I am dissolving, unravelling, drowning?
Yet, gradually, almost without me noticing, the knowledge became easier to bear and I began to find a peace growing within the flurry of appointments and paperwork. And somehow, from somewhere, I found faith again. Not in any God or gods, no. For how could I believe in a capricious being who allowed this terrible situation to happen. My beliefs are more prosaic.
I believe in a few minutes snatched from my busy day to stand outside and lift my face to the sunshine, the daemons chased away by its warmth.
I believe in the power of family that surrounds us with love.
I believe in the square of chocolate melting in my mouth, releasing its dark notes of oak and orange and cloves.
I believe in chunky little arms wrapped round my neck so tightly that it sometimes hurts. But I know it would hurt more if he ever let go.
I believe in the science of the future; viruses engineered to carry treatment through the blood-brain barrier, nanocrystals that can dodge our immune system and target rogue cells.
I believe that there is time enough to reach that future.
I believe in the now.
I believe….
Feedback: Average score: 390 (78%)
Marker comments:
Marker 1
- What I liked about this piece: I liked the searing honesty of this piece. I am living through something similar and there is an astuteness about this story that is refreshing. I really liked the whole idea of 'living in the moment'
- Favourite sentence: Yet, gradually, almost without me noticing, the knowledge became easier to bear and I began to find a peace growing within the flurry of appointments and paperwork
- Feedback: I love the idea of expressing ones feelings and emotions in word so this really inspired me. I am guessing that there is an element of 'lived experience' here - so well done for bearing all. I particularly like the ideas expressed around enjoyment and what can be good in the morass of bad.
Marker 2
- What I liked about this piece: The premise, the imagery, the voice.
- Favourite sentence: And each morning, the knowledge renewed itself in my brain that moments earlier had been cushioned with sleep
- Feedback: It was brilliant!
Marker 3
- What I liked about this piece: It's tough to mark this objectively, because I am crying. I sense very much that this writing is ripped from the heart of the author.
- Favourite sentence: How can I do anything, while I am dissolving, unravelling, drowning?
- Feedback: This may not be conventional feedback, but I want you to know that holding a belief in the future, an staying strong and positive will have more effect upon life than you could imagine. If this is no-fiction, please hold on to this faith because it will light your days and keep you strong. I believe...in you and your son x
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