So finally we have a diagnosis for my nephew, five years after he lost the ability to walk, then to speak, then to swallow, then to move at all. We were hoping for...... I'm not sure what we were hoping for exactly, other than we were hoping for some hope.
What we are offered is a scenario devoid of hope, and yet also devoid of certainty (bar the eventual outcome). What will happen next? And when? And how fast? And how long might it all take? Will he live until his next birthday? Will he make to 10, to 18? And with what sort of quality of life will he have?
I'm the oldest child of the three of us. I'm supposed to sort things out, support everyone else. And there is nothing I can do to fix things, nor to console.
We are inconsolable.
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