And This Was A Good Weekend


I was driving with Bethany in the convertible today, holding her shoulder with my right hand and trying to drive with the left.  She seemed intent on slamming her head through the passenger side window and to be honest, I was silently hoping that she’d succeed.  In the depths of my frustration I was secretly hoping she’d just get it over with; a simple injury delivered to just the right part of the brain, and a quiet end to her constant self-abuse.

That may seem callous of me, perhaps even uncaring and sinister and it’s the type of thinking that evil monsters who harm children think.  But frankly, its what went through my mind.  I start out with a compassionate redirect and end up screaming on the inside and occasionally on the outside as well.  I’ve tried outsmarting her by rolling the window down or pulling her closer to me, even tried hold both hands while driving – all to no avail.  If I roll the window down, she tries to rip the side view mirror off.  If I pull her closer, she tries to rip the gearshift out of the housing or jerks my arm while driving.  And if I do manage to get a hold on both of her hands she head-buts the window again.  Right back where we started.

That’s how it goes – you’ll have one day where she’s happy and delightful and then for the next month it’s anyone’s guess.  This cycle has been going on for so long that we don’t seem to be able to recover anymore and all the sound advice from “good parents” is so thin, so meager and useless.  It has the affect of a “handy-wipe” on an oil spill – the magnitude of the problem is no match for the proposed solution.  I haven’t the heart to explain anymore “you don’t understand, I can’t just fix this like that.”   Bethany was described by a neurologist as “industrial strength” and “Hints from Heloise” just won’t cut it.

  I recall when I spent four months walking across the eastern half of the United States – the idea was that if you really were tired of the journey, take a few days – hole up in a motel and see if you missed the walking.  If you did, then you’d pick up where you left off and continue.  If you had no desire to continue, then it was time to quit.  On the rare occasion that we get some time off, we find ourselves missing her but find it nearly impossible to disentangle exactly what it is that we’re missing but that’s fine, quitting isn’t really an option anyway.

Today, one of our dear friends took her for a few hours so we could go to church together.  The day seemed to be good for her and the photos we later saw brought tears to my eyes.  She’s so beautiful, so happy, and delightful in both personality and presence.  My heart was elated and yet 40 minutes later, I’m thinking the worst.  Am I the monster I spoke of earlier or is it simply a deep exhaustion?  14 years is a long time and each year with its peculiar twist makes this current year ever more effaced than the last.  I can see the wear on Sherry as well, her love for Bethany is far deeper than I can even realize.  Sherry is her advocate, her provider, defender and champion and in return, she’s become Bethany’s main target.  Target for anger, target for obsession, target for attention.  14 years has taken its toll and the emotional strain has twisted her laugh into more of a desperate cry.

To see the photos of the day, you’d believe me insane to harbor such a thought in my mind but then again, what is insanity but a different view of a situation? I find myself thinking "I love you, but I don't like you very much today".  

I pray that tomorrow is better and that God forgives me of the emotional failures of this day.

Comments

Post a Comment

Popular posts from this blog

I Watched a Loved One Die Today

I watched a loved one die today. It was nothing like in the movies, nothing like what I’ve read in novels.   It was neither glorious nor peaceful, exciting nor frightening, there was no opening of the heavens, loud voices or gaseous paranormal activity.   It was in fact, nothing.   She was there one moment and gone the next.   She went from a wonderful mother and dear friend to a stiff and lifeless form that had little visible resemblance to the person I’d known all these years. When I arrived, I could see her struggling for breath through a dark hole surrounded by taught, grey cheekbones and my first thought was “good thing I didn’t stop and get gas in the car first” .   The tragedy in that thought, as shallow as it is, lies in the fact that had I stopped, She’d have been gone before I keyed the debit number into the pump.   Trading gas for life – that’s how bizarre this all is. As I approached the bedside, I could only feel pain for my wife who has done everythin
Read more

Being Fed With Stone Soup

The quiet surgeon went on to explain how his life had gone from being the doctor to being the patient in a span of about 60 minutes.   One moment he’s a surgeon doing what he believed God had designed him to do, the next moment he’s looking at his own x-rays which reveal that he’s now a cancer victim with less than 3 years life expectancy.   Somehow, at the end of all this he was able to say “I thank God for the cancer”.   From that sobering testimony, the pastor turned to face a tent full of individuals who have their own sobering realities stuffed into bodies that are “imperfect” by conventional standards.   He was able to face them and with words that defy logic, speak how each developmental difference was in fact more special than different, more a gift than a curse.   That one set me back a bit.   The tent was alive with human movement but little of it would be welcomed as special in most of the world.   Jesus’s absurd metaphor came to mind, the one where he says “no loving
Read more

The Shock of a Pointed Finger

Again, I notice that it’s 2:30 in the morning.   No one is awake but me, likely no one is in tears but me, at least in this house.   Again, awake as the accusation rolls though my mind – the horrific mental image of my wife and I being thought of as abusive monsters. Given all her bruises, marks and cuts – we figured it was only a matter of time before someone again questioned the source of this entire trauma.   I recalled the first time we were called into question.   In the emergency room for her first massive seizure, the ambulance delivered her, the physicians examined her, and the staff questioned us.   It seemed so bizarre that we would have to explain to trained medical staff what “Mongolian Spot” was.   The bruises they were examining were typical congenital pigmentation found on most Asian children; so much for diversity. Bethany’s life has for many years been one of self-abuse and anyone who has ever spent time with her knows the physical impact on her body as well
Read more