As the Smaller Things Become Smaller

Like a bolt of lighting dividing the air, this is the one sound that can separate my hope from my despair. For the few seconds that it lasts, I am suspended, free from the grip of either; I am at peace and so is he. This is Kenan's sigh: what graciously remains of his *non-pain, verbal communication. The second his sweet voice fades away, the two extremes crash back in on me. 

There will come a day when Kenan sighs his last sigh just like his smile, laugh, and cry before it, only we won’t recognize it as such. It won’t announce itself. Days sometimes weeks will go by before we realize it is gone, along with the chance to name it "Last".

*I've used the word non-pain rather than pain free because pain free as a state of being does not apply to any child with a leukodystrophy.