My normal is not your normal-
My joy is not your joy and my pain is not your pain

“How’s Max?” 2 words, 1 question, I’ve heard this questions thousands of times. I understand the desire to ask, to know, to connect with his journey, his pain and his joy. I am nothing more than a messenger, exchanging information. How do I answer the question that has a thousand answers? I am not sure what the question asker is looking for, do they want to hear something positive that will encourage their own spirit? Are they asking related to just the most recent diagnosis, or are they asking from a big picture view? Is the question really, ‘is he going to live?’

I struggle to continue to close off with short, polite answers of ‘he’s good,’ or ‘doing well.’ I find recently I have transitioned into a darker answer of ‘he’s good, for Max.’ I found myself questioning my motive for adding the ‘for Max’ at the end. Am I seeking some level of unspoken sympathy? Am I forcing others into ambiguity, not allowing them to feel good about positive progress? I rarely offer any insight into what that means, I simply walk away leaving the statement hanging.

The truth can be so complicated. He’s doing better than a week ago, but still not where he was 6 months ago. Better than his worst, but worse than his best. Some weeks, days, and hours are better than others. This is my normal, sometimes its 2 steps forward and one step back but then other times its 1 step forward and 2 steps back. The cycle continues, over and over.

This is my normal, the spectrum of joy and pain of progress and regression. For most this constant state of limbo would be maddening, having no baseline to go back to. Sick gets better, broken heals, and pain subsides. This is the way it’s supposed to be; with the right medical treatment normal is only a prescription or surgery away.

Normal and good for Max is a wide spectrum, which in turn makes my normal and good a wide spectrum.

How’s Max?…. He’s good