That's Just the Sadness Creepin' Up on You

You know, I started thinking that I was finally accepting Jack's diagnosis, and all of a sudden, I'm crying in Jack's bed, holding his tiny hand, after he fell asleep.  It was the little things today that eventually set me off.  His happy squeals at the pool, seeing his skinny body shiver in the cool breeze, dozing off to sleep in the car...

And back at home...I call his name over and over with no response.   Finally, I lightly restrain him to get his attention, turning his face toward mine as his eyes deliberately look past me.  I watch and puzzle over his enjoyment in the repetitive behaviors:  pushing the same button over and over to hear an interesting sound, spinning in his swing, chewing on toys and the iPad, the same nonsense babble spoken again and again, staring and flapping with excitement at his party store kazoo.

Frustrated with my inability to connect, I desperately ask, "Jack, can Mama play your kazoo?"  He stops and looks straight in my eyes, putting the cheap plastic instrument in my mouth and waiting until I play a quick song.  Then, he retrieves the kazoo, leaves the room and retreats back into Jack's world.  It was a little moment where he acknowledged me.  He heard me and chose to interact.  15 glorious seconds. 

Part of me is elated that I broke through, but then, I briefly think about what "could be" or "should have been" and grow sad.  After that, I feel guilty that I'm wishing things were different, which brings about more sadness (and a strong inclination to pour myself a glass of wine).  He's a beautiful, happy boy, but the difficulty, for me, lies in the regression.  Bob and I glimpsed the "could be"...we saw the personality develop, the keen interest in the world around him - we heard his words, and then, something cruel stripped that away, leaving us with a little boy struggling to make sense of our world and preferring to reside in his own.

I often think this will never be "okay" - that this sadness will permeate through each day, everyday and erupt without warning, like tonight.  When will acceptance come, I wonder?  How can I accept something that strangles my son's development and has no understandable cause and an uncertain future?  How can I parent a child and not feel secure about my decisions regarding his treatment?  What if we did something to cause this, or we're making things worse?  I know, I know, don't think that way, but honestly, it's difficult not to let this train of thought take over some days, especially when fatigue rears its ugly head.  This whole thing is just plain sad...a sad weight I feel will never truly lift.