Wednesday, April 18, 2012

The office...after 20 years

I retired effective December 31 last.  I finally got all my stuff out of my office and let Samantha have it last week.  She has showed remarkable patience.

I haven't had the same office for 20 years, of course. 

When we first moved to the Ranch September 9, 1991, the little single-wide mobile home we'd bought to move onto the property served as office, Horton homestead, and Down Home Ranch World Headquarters.

It only had two bedrooms--a small one and an eentsy-teensy one.  We gave Kelly the small one, which also have a 3/4 bath in it, and we crammed our king sized bed into the eentsy-teensy one.  There was about a foot's clearance on every side.

Since there was no room for office equipment, Jerry set about assembling a small room off the back door area.  It was not a thing of beauty, and I named it "The Wart," because that's what it looked like from the outside, which Jerry was not especially happy about.  That was my first office, complete with Macintosh computer and a file cabinet.

After four years the Ranch's office needs surpassed our need for a bedroom so we jettisoned the king sized bed and gave the bedroom to the Ranch.

This left us sleeping on the sofa bed in the living room.

After about three months, I rubbed my aching back one morning and said, "That's about enough of that," and let hubby know that we were moving.  Didn't know where or how but it was going to happen.  I looked in the Taylor Daily News and behold!  There was an ad for a small farmhouse to be moved for $7,000 and we do the moving. 

We looked at it and it was beautifully constructed.  We bought ten acres from the Ranch and moved the house on it, added a bedroom, and made a home.

Now the Ranch could stretch its wings and occupy the whole mobile home.  Jerry got his own office, I got mine, and Jackie, who did the books, got the living room.  Then lightning hit the barn and the bolt ran through the telephone lines and blew up all our telephone connections, including the message machines and the computers attached to them.

But Jackie had backed up, so we were still in business.

Then we built the Garden Center and I had become Program Director so I got an office there.  All my stuff came with me.  When we built the Learning Center I moved into the front office there, and all my stuff came with me.  When we built the big barn and I gave up being Program Director, I moved into the barn office, and all my stuff came with me.

So, it's a lot of stuff.  I resolved to carefully sort through every box, properly disposing of, passing on, or storing every item before packing a new box.  It was a great system.

It lasted through that first box.

Last week I faced the reality that Samantha would retire before I had time to sort through every single box that would be filled with the remains of my life at Down Home Ranch.  So everything went into a bunch of boxes, which now occupy both our home office and my music room in Benedict House.

They join 19 generations' worth of family pictures and other treasures, so I'm bracing myself for a long stroll down memory lane.  If we invite you for dinner and you come, know why those doors will remain shut.

Tuesday, April 17, 2012

What if...part II

Baby mine, little girl,
Precious daughter, tiny pearl,
You are mine,
through all time,
Til the ending of the world.
Years and years ago, there was a controversial play staged around the country.  It depicted the turmoil that would erupt if couples could determine while their baby was in the womb that he would be gay.

It was very disturbing, since it came out about the same time that abortion on demand was becoming an established feature of American society.  It's almost a given that couples will want to abort babies identified with Down syndrome, Trisomy 18, Fragile X, and a variety of other genetic anomalies that entail intellectual disabilty in those who have them.

But what if the baby would be entirely normal and grow up to be homosexual?  People were rattled by the implications.  Little did we realize at the time what "brave new world" awaited us down the line.

Now statistics are indicating that one in 88 babies born today will have autism.  And since most people with autism are male, this means more like one in 50 boy babies will be born with an autism spectrum disorder.

So far it seems like there won't be a simple genetic explanation for autism, but rather a whole range of possible players involved.  But still, at some point we'll probably be able to detect.  And then what?

Ninety plus percent of babies identified with Down syndrome are aborted today, and that's for a disability with an excellent reputation.  (Well, assuming the prospective parents every get to hear about it in the first place.  Usually all they hear is "looks different and has an IQ of 50.")

It's ironic and puzzling that just as we begin to rid society of--let's call it what it really is--eradicate one kind of human being, we start having an upsurge of another kind.  What does it mean, if anything?

Cantor Steve and I were talking about this during his visit a few weeks ago.   We remarked on the fact that the very advances in medical technology that enable us to seek and destroy babies with disabilities in the womb are also responsible for saving millions of lives that would previously have been lost through car accidents, battle, and other forms of mayhem and destruction.

They survive, yes, but often very damaged, functionally little different from people born with preventable disabilities.

No surprise, I have my own thoughts on that.  I believe that for far too long society has compartmentalized policies into narrow little boxes that enable us to make choices that really do not fit into a coherent whole. 

I have never heard a parent of a child with Down syndrome, or autism, or traumatic brain injury say, "I wish he had never been born," or "I wish he had died in the accident."

I know they exist, but they must be very rare, because I have known literally hundreds of parents of kids with disabilities.  And not only among the parents of cherubic happy kids with Down syndrome, but parents of kids with autism whose behavior was so challenging that they literally had to lay aside their own lives for years and years.

I once read that parents who get a prenatal diagnosis of Downs and abort are much more liable to be divorced and/or depressed a year later than parents who allow the child to be born. 

I know when pressured to get tested during my last pregnancy, at age 42, I could only think, "But that seems so inhospitable, to invade my child's sacred space like that."  Whoever was in there, I wanted to meet him or her face to face. 

And yes, she has Down syndrome.  I was less than thrilled to become the mom of a child with a huge disability.  But lying there on my chest after delivery, was a person.  I can't at this point imagine going through life without having shared it with Kelly.
And the point of all this inchoate wondering? 

Just this:  I believe there is a divine plan to bust up all those little boxes.

Friday, April 13, 2012

A man with a purpose

Travis loves caring for Pete
While obsessively reading everything I could get my hands on regarding Down syndrome when Kelly was still a toddler, I came across an intriguing (and heartbreaking) paper from a professional journal entitled:  The Curious Case of an Overfunctioning Mongoloid.

At that point the article was about 30 years old, but the title sounded like something out of the previous century, as well it could have been.

It concerned an elderly couple in a small town somewhere in the Midwest, who as they aged were increasingly cared for by their son with Down syndrome.  Although they were accustomed to caring for him, as their ability to care for themselves, each other, and their home decreased, their son's increased.

First he took over walking to the small downtown area to shop for food and supplies.  Then he began cooking simple meals.  It took him a while to get the hang of the old-fashioned reel mower used to cut the grass but before long he mastered that, too, and eventually came to handle everything from the laundry to the banking to helping his parents with their personal care needs.

Finally, the old folks just gave out.  After their deaths, the son was taken into custody by the state authorities, administered IQ tests, declared to be mentally defective, and sent to live out his days in a state institution for the feeble-minded.

I hope it wasn't so, but there he probably came to know first hand what the Eden Alternative movement refers to as the three blights of aging and disability: loneliness, purposelessness, and boredom.

What a tragedy!  I quote at this point from a comment received regarding the recent post What if?

"I also could say "What If"?  My OBYGYN Doctor almost mandated me to have an amniocentesis test when I was pregnant with my sweet David, at 38 years old.

"What if I'd taken the test and made the WRONG decision to not complete the pregnancy?  I would have missed out on his happy personality, and he has taught me so much more than I could ever teach him about acceptance and forgiveness.

"He holds no grudges, forgives instantly, and is the joy of my life.  He will be my companion as I get older, and maybe even help take care of me some day!  ...

"I accepted my Down syndrome son and after being told of his disability, it's been upwards ever since.  My friend said we should call it Up Syndrome instead!" 

Some may chafe at the implication that David is not being given the chance to create his own life away from the family.  I believe that he is lucky to have a mom who trusts that he can give as well as take in this life. 

I doubt that David feels lonely, bored, or without purpose.

David has a purpose in life.  As the old saying goes, "No man with a friend lacks a purpose in life, " and David is a valued member of his family and their circle of friends. He has inspired admiration, love, and trust in those who know him, and who count on him in ways that matter.

And how many people do you know who "have a happy personality, hold no grudges and forgive instantly?"