Sadness of the Heartery

Sometimes, I think I live in denial.  And I'm not just saying that because the season of Passover is upon us, and there are lots of Nile/De-Nile(ial) jokes floating around.  I think I may need denial to get through my parenting gig.  Otherwise, I might just throw in the towel.

This isn't about being the best parent, having the best kids (whatever that means), or otherwise grabbing the brass ring of parenting.  It's about the fact that I have the thing I continually refuse to admit out loud:  an incredibly hard road with a profoundly disabled child.  And that causes incalculable damage to everyone else in our immediate, nuclear family orbit.  This may sound dramatic--perhaps even exaggerated--but it's actually the clearest truth about my life.  And the thing I do mental and emotional cartwheels to pretend is not the case.

In the recent space of less than 24 hours, I thought my husband was going to run away; I heard my daughter repeatedly call my son a "f....g idiot" and I heard my son endlessly go on with "I said 'shut up' to my sister!!" In this same time span, I literally jumped on top of Noah at one point to keep him from getting the Ipad (long story), only to realize that he's got physical strength I never knew he had.  Ariel then tried to come to my rescue and I fell on her, hurting her arm.  It would probably look funny to an outsider, a kind of Three Stooges set piece of pratfalls and head-bangs.  But this was all too real.  And sad.

Night-into-morning did not bring the hoped-for relief.  Noah was back to obsessing again about his DVD player, which couldn't be charged, since he left the chord home.  No amount of explaining would help him understand that once we got home, he could use his player again.  It got so bad that on top of his verbal obsessing, he was crying real tears in the Florida airport, and I worried that we'd be the reason the pilot would have to initiate an emergency landing once we were airborne.

The look of fatigue and anger on my husband's face, a carryover from the day before, but just more intense, was heartbreaking.  It was the look, if you've ever seen one of the face of someone you love, that says:  "Don't try to console me.  Don't touch me.  Don't talk to me.  I'm just rage right now."  So I didn't even have my partner to lean on.  All I had was my cockeyed hope--the one I brought with me when we took my dying father, with his metastasized lung cancer and Alzheimer's to Israel--that somehow, I would make the flight home work.  I would sit with Noah; I would distract him; I would get him to forget the DVD player.  Truth be told, I had no game plan.  I just knew I had to make it work.  Just like with my dad.  Noah was my model for my father back in 2006; my father was my model for Noah now.

I told Noah a couple of days ago that when he gets upset or angry, and when he says mean things to his sister, it makes my heart sad.  A day or so later, when Noah was struggling with his own anger and disappointment and his inability to understand my explanations about his DVD player, he said to me, "Is my heart sad, Mommy?"  I don't know Noah.  I'm not smart enough to know; I'm not strong enough to know.  I'm just dumb and dedicated enough to keep trying to figure it out.