Saturday, April 30, 2011

Patterns, Pain and Perfect Weather

These days are a painful pattern of interventions and redirects, none of which seem to carry any success.  Bethany’s abusive and self-injurious behavior seems to be growing in intensity, her sleep – less predictable.  We don’t even bother hoping for a good day – we just wake up and wonder when it’ll all start falling apart.  And if you think it’s falling apart for her, imagine what it’s doing with us.

Between mom’s Alzheimer’s and 14 years of magnified complexity with Bethany – lets just say we’re tired.  It’s not uncommon for us to give up hope at least 3 times a day.

Today I thought the emotional storms had passed so I took her for a late afternoon drive in the ’78 MGB.  Top down, breeze flailing all that black hair, nice music, and all the sunshine you could imagine thoroughly washing away all the worries and frustration. It was a great ride right up until she decided to start head-butting the passenger-side window.  I was angrier with her for screwing up a nice ride than I was worried about either her head or the window.  She breaks so many things that I don’t even flinch anymore.  Fist through the wall, I can patch it.  Break off a handle, mangle a vase, smash a window, rip the door off the dishwasher…you get the picture; I fix it. 

Bethany, I can’t seem to fix.

Thursday, April 28, 2011

The View from Under the Bra Rack

Our life is determined by the mood of a 14-year-old Special Needs girl.  I’ve been watching our life morph into a slurry of mediated and moderated events that all have one common theme: accommodation of Bethany’s unpredictability.

Imagine living with the man in the Bible story of “The Man of the Toombs” (Mark 5).  The author describes a “demon-possessed” individual that no one could constrain, understand, and worse - no one cared to.  At times, Bethany fits this description figuratively and literally and how we deal with those episodes are heart wrenching, beautiful, and humorous at the same time.  Sometimes, we can “head off” an episode by creative accommodation and in doing so you find yourself in a position that can only be described as insane.

Heading to watch Jon’s baseball game, Bethany decides that she’d rather lay in the road and throw a fit, hitting herself in the face, ripping her clothes and so on.  For the sake of safety I dragged her to the curb and began the process of haggling with her to get her to the game.  I really wanted to see the game so I finally hoist the 100lb, flailing bag-o-anger over my shoulder and walk to the game.  I calmly watch the game as she acts out all her anger and the crowd calmly watches us.  Finally she slows down a bit and sits on my lap, intent on making acquaintance of the lady sitting next to me.  In classic Bethany fashion, rather that shaking her hand and saying “hello”, she leans over and squeezes both of the woman’s breasts. 

The best response I’ve ever had from someone in such a situation came from a store clerk in Holland.  Bethany decided that we needed to go into a store that specializes in intimate wear for mature ladies.  What started as a walk on the downtown merchant district, turned into a trip to the foundation section in the back of the store where she immediately decided that we needed to sit under the round rack of bras and related stringy-things.  I have no idea how she found this spot but she liked it there and was quiet, calm and happy.  She also demanded that I sit with her under the rack.  I’m no fool, if something makes her calm we take advantage of it.  After about 20 minutes under the rack the sales lady comes over, slides an opening between the 40DD and the 42C section, looks at me and asks if she can be of any assistance. 

What do you say in such a situation?  Thankfully, the lady took a good look at Bethany, seemed to understand what was happening and merely said, “oh, ok..well, if you need anything – just let me know”.

I thank Jesus every day for people who see, and while incapable of understanding, at least attempt to accommodate us even if only out of compassion.  If nothing else, they’ve give us a bit of dignity in a situation that has anything but.

Tuesday, April 26, 2011

Why Spandex Biking Shorts?

I noticed on my bikeride home last night how ugly west Michigan has become.  We seem to have sacrificed beauty for convenience, traded richness for ease; wood was traded for plastic and vinyl, and relationship traded for a bigger house.  The sum result seems to be a society that neither cares for nor finds value in small things that hold such great promise.  Old houses with rich character are covered in mute vinyl, large utility poles line the road with heavier cables intent on bringing more power to supply more appliances to further disconnect us with life on the outside.

As a pedestrian, riding 20 miles to and from work this lack of concern quickly regresses into an all-out contempt for human life.  The cars passing me on a long uphill are angry with me for what amounts to a 4 second slow-down in their rush to get to the next thing.  I know its 4 seconds because I usually count the time from the drop in engine rpm to the point where, just ahead of my handlebars, they slam the pedal down like a cop headed to a robbery.  Compassion and concern for others only matter on Sunday or when we need to feel good about ourselves.  We write the check, hold the door, smile to the stranger – all while thinking “what a good boy am I”.  Honestly, I think I now know why “Jesus wept”.

Think about these things next time you see someone walking along a road, or when you see a fuzzy cow enjoying green grass in a field.  Be amazed when you see children playing outdoors in the mud, using sticks and empty boxes and full imaginations.  Think of these things when you speed past frumpy, middle aged cyclists wearing spandex shorts and outrageous colored jerseys.  Go ahead and say to yourself “why’s that ass in the road, he should be on the sidewalk” (a sidewalk which likely doesn’t exist, but you didn’t notice).  Go ahead and think that but bear in mind, the very reason those cyclists wear those tights is so that that magnificent rump of theirs can look you right in the eye and say…

Monday, April 25, 2011

It Wasn't Always Like This...

I was driving in my old truck yesterday, intent on towing my once-again disabled 1978 MGB from the spot where she finally came to rest after having a mild stroke.  It happens like that with old cars, a small blood vessel pops somewhere under the hood and suddenly the whole thing becomes paralyzed by the side of the road. 

I was happy that my son could come and help me drag it home and I was delighted by the skill that he showed – carefully folding his 6’6” frame into that little two seat, English buggar. 

He did so well maintaining dignity there in the chase car – his passenger, a 14 year old special-needs sister having refused to vacate the disabled vehicle, rode along screaming in delight with every jerk and bump of the tow chain.

I was proud of the lot of us, Jon, sitting a full head higher than the windscreen, Bethany with her jet-black hair floating up as if electrified, the old rusty truck towing the lot of it all.  I was proud even after the fabled “right hand turn” when I felt a jerk and looked back in the rear-view mirror and noticed the MG sitting at a stop light and a long, silver chain dragging a car bumper along the road behind me…

Such is my life; here “In the Fik of it”, I am.