THE SPINNING MACHINE: LIVING LIFE WITH A CLINICALLY CHALLENGING CHILD WITH A CHRONIC CONDITION

How can I explain the depths of despair in my heart? I will mildly attempt; with this analogy.

“I am in a spinning machine! One of those centrifical force rides you voluntarily get on at a fair. I’m sure you remember those days. After paying three dollars, you hurry to get the best position and in a brief moment it ends and it wasn’t long enough!

However; my ride was not a choice I made and far from voluntary. The cost can never be calculated and one second is too long. There is no end, it never stops!

The machine begins to spin. It keeps getting faster and faster and bigger and bigger. The floor keeps getting further and further away. I am pinned against the wall with my arms and legs open, completely unable to move myself or stop the spinning. I continually do my best. I attempt to move but only make a fraction of progress before I am, by the force, pinned back against the wall. I am completely vulnerable to whatever force is propelled. My efforts to move cause more pain, the machine spins faster, the floor gets further away and I am terrified, exhausted and unable to help myself.

Every now and then, the machine slows down and a door opens (symbolic of a diagnosis or an effective management plan). I am elated. -- As quickly as the door opens, it shuts again and the machine spins faster, the floor gets further away. I try again to move a finger or a foot and I find myself trapped, pinned against the wall, unable to help myself.

I struggle until... there is nothing left. And then... the same door that opened at the beginning of the ride opens again. It shuts again. The machine spins faster, the floor gets further away and I am losing all sense of reality.

At the centre of this ride, is my child. I can’t imagine what his little heart and head are feeling. He sees this huge machine spinning all around him but he doesn’t know exactly what it means. He reaches out but I can’t explain to him what I don’t understand myself. I am determined to provide him some measure of shelter from all this craziness; to stop the pain. All I want to do is love him and cherish his childhood. I want to hold him in my arms and protect him. Give him the very best that life could possibly offer him. I want to be able to say I did all for him a parent could possibly do. He is my all.

I can’t move, I am pinned against the wall, the machine starts spinning faster, the floor gets further away, I manage to get my hands to my chest, my heart is breaking, I try to hold it together. I lose parts I can’t retrieve!

A terrible thing starts to happen... the machine begins to malfunction... Piece by piece parts are falling off and person by person are able, unlike me, to escape the machine and get off. (symbolic of doctors and institutions transferring care, by their own or my choice) They do not have to give their life for the child in the centre. I do not have this option. The machine spins faster and faster, the floor gets further and further away and I must keep spinning...

I believe... that God has and will continue to give me the strength I need and intervene, miraculously to stop the spinning and give me my heart’s desire. It’s getting harder and harder, the machine spins faster and faster, the floor gets further and further away but I have claimed a promise found in 2nd Corinthians 4:8-9: We are hard pressed on every side, persecuted but not abandoned, struck down but not destroyed.

When the machine is spinning me so fast, I get so disoriented I can’t remember this and the machine gets faster and faster, the floor gets further and further away.

I must remember my promise... It is too hard! I can’t think anymore!

As time goes on, I am more and more terrorised. My ever growing wealth of knowledge breeds an acute awareness. I wait in fear, again, for another door to open up... The machine gets faster and faster, the floor gets further and further away... the machine is out of control...

The door opens... my Child is sucked into the dark desolate vortex, his little arms are reaching out to me, I cannot move, I am pinned against the wall.

I hear him crying, he is screaming for ‘ M O M M Y ...’

I am thrown off the machine and killed by the flight!


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