Sunday, January 03, 2016

Living with my Lesser Self

He stands there, lanky body draped over mine, heaving great sobs of frustration.  My tears mingle with his, as I ask his forgiveness for being so upset and angry at the wrong target...him rather than his very broken brain.

Kenny lost his wallet again.  He can't locate his Christmas stocking to pack away despite JUST having it in his hands yesterday...or maybe earlier in the week...he doesn't really remember that either.  He just received a replacement paycheck after losing his last one.  Every time he turns around, he is doing something incorrectly, he understands people incorrectly, he is always, always wrong.

The ache of being Kenny is palpable, yet he has a graciousness about him unlike any other human being I have ever met.  He forgives me, oh how he forgives me!  He forgave me over and over again early on when we had no idea this was more than just obstinate behavior.  He forgave me as a ranted and raved at him over losing his 4th or 5th jacket, who knows, I lost count.  He forgave me every time I looked at him in a state of confusion over how such a seemingly bright kid could do such...stupid...yes I said it...stupid things.

Tonight is one of those "crappy mom" moments, the kind of night when I heard myself raising my voice at him this afternoon, exasperated beyond belief because I am tired of this fight.  I raised my voice, and I expressed my frustration at him, as if he could actually change anything and wouldn't in a heartbeat if he could.

You see, I forgot.  I forgot that I have to deal with it, but he has to live with it forever.  I can escape it from time to time, he never can.

And still that young man loves me, desperately, completely, not because I am his lifeline or the only one who really understands him, despite not always acting like it.  No, Kenny loves me simply because I am me, as pure a love as ever there was.

You had no idea we lived with Jesus, did you?

Yea, reminders day in and day out.  He comes to me in the morning and says ever so cheerfully, "Good morning mom!!  How did you sleep last night?  Let me give you a hug." and then he bear hugs me for as long as either of us wish.  He rushes to help me walk over ice, he opens car doors for me, he carries anything I might have to carry, a true servant's heart.

Today, yet again, I failed him.  I expected something from him that his brain will never ever allow...memory.  I made it about him, and not his brain.  He was at a breaking point I just hadn't picked up on, probably because I was so busy wallowing in my frustration with him that  I couldn't step out of my own thoughts and compassionately put myself in his shoes, something I try to do as much as I can, but today it didn't work.

My lesser self gained a temporary victory today.  Unfortunately, I'd love to pretend I am one of those super perfect, wonderful blogging moms who always gets it right, or who has just the right way to put into words their "humble acceptance of their failures".  Alas, I am neither...I am a mom with a very challenged kid who lives in a family full of challenged people who totally blew it, and does so far more often than I care to admit.

I am tired.  I am tired of beating my own head against the wall trying to get answers and figure out a future for a VERY bright yet VERY handicapped young man.  I am tired of not knowing what happened to my sweet son, or how to fix it.  I am tired of hurting for him.  I am tired of having no clue how to help him feel he is maturing into the adult he is becoming when none of the maturing experiences are easily available to him.  I am tired of dashed dreams, not knowing at this stage when to step in and when to step back...and having him tell the nurse he was born in October of 1895 when his birthday is November 15, 1998.  I am tired of no one ever understanding how hard it is sometimes to just be us.  I am tired of trying to make laughter come to lighten the moment when all I want to do is groan inwardly.  I am tired of running back to church for his iPad which he left there THREE WEEKS in a row, and doing so with a smile.  I am tired of doctors and others who work with him for 10 minutes saying, "He is a bright, capable young man, not much wrong there." and yet he can't follow the simple recipe on the back of a cake box...not ever.  I am tired of being told by others more in-the-know with kids like him that, "He is going to fall through the have almost done too much for him so he appears far less disabled than he really is based on certain test results.  He can't get services, he is too smart...and yet he will likely never be able to hold a job."

As tired as I am, I can't begin to imagine how tired he is...of never hearing a single thing correctly, of never being able to get directions correct and act on them, of always losing every single thing, of seeing siblings succeed and move gradually into adulthood and talk about things he will never be able to do, of having to choke down and swallow a future that will never look "normal" and try and find meaning and worth in a life that has SO MUCH DEPTH and yet so much that doesn't work right.

My lesser self won today, but yet again, I was forgiven, yet again, I was held and hugged and treated with respect afterward.  My better self lost today.

But his better self won.

Maybe that is all that is important on this night.

I love you so much, Kenny.  I will keep hanging in there with you, if you keep hanging in there with me.


Karen D said...

Kenny, I've read about you and want you to know I think you are a really cool person. Keep it up, young man!!

Karen D said...

Cindy, I've read your blog and seen your posts but I've never met you. However, I think you are the coolest mom ever. Keep it up young lady!!

Lori Muntz said...

Oh Kenny, I understand, to a degree, your frustration. Owen has had issues that made him feel stupid and frustrated, and I would get upset because he didn't finish, didn't do it, or forgot to turn in homework, etc. Owen is in public school where he has a whole team of people helping him. I get a break from it. But, you know what? He is doing better. Maybe an occupational therapist could help you with some new techniques? Owen has always appeared bright, too (and you know what? He is.) He just needed help in the right areas. I want to get the 2 of you together. Much love. Lori & Owen