Profoundly Bittersweet

 

Profoundly bittersweet.

So much debate around the word "profound" as it relates to our most severely affected with autism loved ones. Even in this "profound world" I find myself in - as I look around I wonder if there's some word or label even more "profound". There are those in my end of this spectrum who are profound - needing lifelong care as my son will, but who can still have some semblance of participation in the world. One dad I follow -- his profoundly affected son can go on hikes with him. Oh, how I long for my son to be able to do at least that! But since PANDAS and its ugly claws of unpredictability - I cannot take him out. He's stronger, faster, and I don't want to end up like a good friend whose son had one such meltdown in public and gawking onlookers assumed his father's attempts to calm him were some sort of kidnapping or abuse. The court had to sort that one out in charges against his father!

So instead, I find his world shrinking further and further into the abyss of profoundness that seems to be a bottomless pit.

My day never starting until his does.

Whenever, if ever with seizures, that may be.

Mornings like today, after nights like last night where he was up just about hourly, - I want to just return the favor and go wake him up! "Seizures be damned!" my thought! As I know all too well if I wake him up from a sleep, he will more often than not have a seizure. Then my attempt to start my day however late, will end up being never starting at all! And so, my only choice, to wait. Story of my life it seems, this profoundly perpetual waiting -- for help, for respite, for treatment, for options for him long after I'm gone!

And so as I went in his room to do the things to hopefully wake him up as subtle as possible --- opening the curtains, turning on the music, gently rubbing his foot or head ---- I came across this picture.

Stopped me in my "wake up revenge" tracks.

How?

How could I wake up this boy, this man, so at peace after all the wars that went on in his body to keep him up so much lately?

We talk about selfish -- us warriors are the must unselfish people on this earth with the moment by moment sacrifices we make every moment of every day, week, year, decade, --- lifetime!

But oh, how I long to be truly selfish!

To wake him up so I can start my day and perhaps walk for exercise and sunshine before the heat-stroke-of-the-day time.

How I long to have a schedule I could plan, let alone keep!

It's about 9:30am right now......

This boy, this man of mine is at peace.

I long to wake him up so I can begin my day.

But who am I to deny him these fleeting moments of peace?

And so I take the picture, close his door, and hit pause on my life, yet again.....

I wish society understood the profound of that...