Epiphany 2010

I wasn't ready for Epiphany to come so soon!  Usually we have ten to 12 days to bask in the light of the Christmas tree, but today in church we celebrated Epiphany.

Fr. Larry talked about how pervasive the images of Epiphany are in our culture--the Kings, the camels, the star, the Holy Family, the King Herod, the gifts, and of course the precious Babe lying in the manger.  Everybody recognizes them, even if they aren't sure what they all mean.

Fr. Larry said that one thing they mean is this: Each of us carries wisdom, a star that we're following, at least a touch of King Herod, and--hopefully--love, within us.  Each of us has gifts to give.  We struggle between what we believe is the security of what we have and accepting the invitation of the One who came into the world with nothing to offer but Himself.

After church, I came home and spent a couple of hours cleaning my car inside and out, mostly to have an excuse to spend the beautiful afternoon outside.  As I was vacuuming away, Fr. Greg arrived with Jim, returning after the holidays. 

After Fr. Greg  got Jim settled into Timothy House and left I called and asked Jim if he wanted to walk down and see if the hens had laid any eggs today.  He did.  We stopped by Barnabas House to drop off a gift from Jim to the guys there, said hi to Mike sitting on the porch of Gabriel House, and walked mostly in silence to the Chicken Hilton.

We found a dozen eggs of different sizes and hues, and then went to the garden to check out the broccoli and cabbages.  I was afraid the recent freezes had damaged the cabbages, but they were fine, so I cut a few small ones for dinner tonight.

On the way back to the Village, I asked Jim if he wanted to eat with Barnabas House tonight or have Jerry's famous fried chicken and potato salad with us.  A little smile crossed his face and he said softly, "Fried chicken with you and Jerry."

That said, we settled on a time and walked to Timothy House.  After I left Jim I saw Kristen doing her walk around the Village Road.  She had her headphones on and was singing away as she walked.  Above us the sky was deep blue and criss-crossed with contrails.

There was no wind, not even a breeze, and the late afternoon light was startlingly clear. 

"Everything is so calm and bright," I thought to myself, and then laughed at my choice of words. 

Anita came by just as I reached Benedict House and swung into the drive.  She confessed that the day had been hard for her.  Anita just moved into Teresa House, leaving her daughter Alaina at Martha House. 

"This is the first Sunday of her life that I haven't taken care of every little detail of her getting ready for church," Anita said.  "I held out as long as I could and then I just had to call Naomi and check on how things were going."

Kristen, Kelly, Ashley, Alaina & Rebekah

When Kelly moved to Martha House five years ago, I felt her absence so strongly it was almost a presence in itself.  The scared old king inside me so wanted things to stay the same, to have her there by me, to get those daily hugs, those dozen "I love yous."

Back then I needed to remind myself that the vision that was given to us of the Ranch came from a wiser place than that, and it was time to let my baby go and spread her wings a bit.  I feel for my friend.  I know how much faith and courage it takes.

Anita, Julia, Terrie, Natalie, & Crystal

It's been a lovely day, unhurried and unharried, finding glory in the ordinary.  A gift indeed.

Wise Men image from squidoo.com

Mess to Messiah

The Annunciation by Fra Angelico

Yesterday the gospel reading centered upon Joseph's dilemma, to wit: he had found that his young betrothed was with child, and in this confusing mess there was only one thing of which he could be certain, and that was that he's had nothing at all to do with it.

Scripture says Joseph was an honorable man, and so decided to divorce Mary quietly.  In other words, he would not publically denounce her and perhaps force her family into killing her or worse.

For women, yes, there is worse.

But then the angel came to Joseph in a dream and told him with whom Mary was pregnant, and the role this baby was to play in human events.  The angel assured Joseph that indeed, Mary had commited no betrayal, but in fact that  she had acceded to the audacious request of the Most High.

Beyond that the details were probably  pretty fuzzy.

So Joseph went to bed with a dilemma, and woke up to a miraculous mess, as Fr. Larry characterized it.  How many men would pop out of bed like Joseph, look themselves in the mirror, and say, "Whoa! This is going to be an interesting ride!"?

Most would just see their world and plans crumbling about them.  But Joseph seems to have been a peculiarly unflappable man,  who was from the House of David, late of the shoot of Jesse.  He was familiar with the passage in which all this was foretold.

And I guess if an angel takes the trouble to visit you, it's hard not to pay attention to what he says.

Fr. Larry says Joseph is a prime example of what to do when you find yourself in a mess: invite God to join you in it.

Fr. Larry's right.  When our Kelly was born a baby was the last thing we needed in our lives.  We were struggling, trying to finish Jerry's degree, caring for our two fragile aging mothers and struggling with college bills.  Life was good, but it was full to overflowing, and when I found out I was pregnant things went way over the top.

When Kelly was born with Down syndrome, we felt as though our world had completely collapsed. 

When the hospital told us it looked like she had neonatal leukemia we realized the thing we wanted most in the world was for her to live.

In those dark days before her blood chemistry began to resolve, we invited God in to be a part of our mess.  With that Guidestar before us, things began to sort themselves out.  I prayed the Lord's prayer 50 times a day some days.

We'd felt like we were in one of those kids' games of long ago--the little picture disc with holes for the 5 BBs that you have to tilt and tap to get each BB in a hole.  At first all the BBs whirled wildly around the inside of the disc, but first one, and then another, settled into its hole, and before long we settled back into being a family. 

Same sick moms, same college bills, same demanding jobs, plus a fat baby girl with the world's best smile, who needed therapy three days a week.

But that was OK. 

Jerry had said the night Kelly was born, "Well, now we find out who we are as a family."

And so we had.

photo courtesy: http://www.artbible.info/art/large/255.html

Life is Complicated

Back in November Jerry and I promised Michael a date with Natalie for his birthday: a movie and dinner.  They wanted Kelly and Sterling to join them so off we went Tuesday afternoon and had a wonderful time.

Then driving back home in the dark Michael began imitating "the GPS lady" as we approached the Ranch.

Michael's an incredible mimic with superb comic timing and had us in stitches as we passed the Ranch.

The GPS lady became indignant: "You did NOT stop at your destination!  I TOLD you you were at your destination! You have PASSED your destination!  And what's that smell!?"

We dropped Sterling off and backtracked to the Ranch.  First we had to stop by the Chicken Hilton for Natalie to check the chicks, turn on the heat lamp and bar the doors. 

Then I made the rounds of the Village dropping off Kelly at Martha House, Michael at Barnabas, and Natalie at Teresa.

Then it was back to the barn to fix bottles for the Dude and close up his stall, since it was forecast to freeze.

Finally, back at Benedict House, Jerry was awake but already turned in, so I said goodnight and settled in to watch the "Good Wife" on TV and decompress a little from my busy day.

Twenty minutes in, the screen went black and a gigantic hissing sound began emanating from the set.  Not a good sign.  After fiddling with the controls I gave up and went to bed.

Next morning I was up at 5:30 AM to drive into Austin and meet the cable guy to hook up the new TV at the condo.  Which he did, and it worked fine. 

While he was here. 

Early Thursday when I discovered it would not turn on, I resolved to call the cable company later in the day.  My immediate plans included checking out furniture at Lack's for the new houses and buying breakfast items at Costco and then heading back to the Ranch.

Alas, the best laid plans...

I started the dishwasher going and as I put the detergent back under the sink I noticed water pooling on the the floor of the cabinet.  Further investigation revealed that the whole undersink plumbing assembly was on the verge of collapse.

I quickly turned off the dishwasher, sopped up the water, and called Fox, who promised to send someone over that afternoon.

It was only about 9:30, so I drove to Lack's.  Alas, as I entered the parking lot, the Granny Charger began to cough and sputter.  I went inside, took pictures and noted prices, then drove straight to a local car repair to see what was going on.  I left the car and walked back to the condo.

About 1:00 the plumber arrived and worked for a few hours redoing the whole installation under the sink.  Then the shop called.  They couldn't diagnose anything with the car and suggested I take it somewhere else.  I walked to the shop, got the car, and lurching and coughing made my way up Burnet to Gordon Automotive.  They couldn't promise to get to it today, so I called a friend and asked him to pick me up.

Since Gordon's isn't very visible from the road, I went next door to the Waterloo Ice House, where I was held hostage and forced to consume coffee and a piece of apple pie a la mode while waiting for Greg.

Greg arrived and brought me back to the condo.  Fortunately, it would be easy to live totally without a car in our condo neighborhood.  Everything one could ever conceivably need is within a one-mile radius of the Tiffany Condominiums: movies, grocery and department stores, parks, gyms, yoga parlors, craft shops, bus lines, candy stores, coffee shops, a gazillion eateries, and our church, St. Louis Catholic.

Jerry and I bought the condo a few years ago as we became increasingly reluctant to come into Austin in the evenings for concerts, church activities, or to visit family.  That drive back at 11:00 PM is no fun for the old folks.

It's a nice contrast to Ranch life, where our motto is: "If they don't have it at HEB, Wal-Mart, or the feed store, you probably don't need it.")
There was one surprise however when we bought the condo.  We expected a lot more noise--sirens and car noises and alarms and such.  After all, we're just off Mo-Pac and Anderson, with the train tracks a block away. 

But at the Ranch, the coyotes start choir practice at dusk and the donkeys and roosters fire up their serenade at dawn.   All we hear at the condo most of the time is the gentle trickle of Shoal Creek, if that.

Anyway, it's been a puzzling and frustrating couple of days this week, what with my infrastructure crumbling about me, but I don't suppose it has any greater significance than coincidence.  Everything will be fixed, we will be a little poorer, and our local commercial establishments will be a little better off.

And life will go on.

Death Comes for Grandpa

I received an email a few days ago from the mom of one of our Ranchers. She wanted us to know that her son's grandfather had unexpectedly died the night before.  She needed help putting together a plan so that her son would have support close at hand when she broke the news to him that night.

We've noticed over the years that for many, if not most, of our Ranchers the insult of death seems to remain forever fresh in their minds and hearts. They will suddenly burst out crying for a grandparent who died many years ago, the grief as raw as the day it happened.

We wonder: What's going on? Is it really the memory of Opa? Is Opa's death substituting for a current anguish that can't be named? Or could it be--in part at least--a ploy to garner a little TLC at the end of a long and tiring day?

I believe the grief really is attached to the loss, and for them the memory brings back that jolt we all feel when someone close dies--that gut-wrenching sense of loss, anger, and helplessness.

On the other hand, those of us without disabilities tend to live our lives compartmentalized neatly into past, present, and future.

I think of my mother, who died in '89, with no particular sadness. I've sorted out my feelings and packed away my memories. For me she will forever exist between the parameters of 1917 and 1989. For good or for ill, it's over.

But many of our residents, particularly those with Down syndrome, live life rooted firmly in the here and now, with a vulnerability hard for us even to imagine. They go through life with their hearts unguarded, gloriously open to the moment, but then boom! Out the sad memory pops, and the heart breaks anew.

This mom was wise to cushion the blow as best she could.

I told her I would let all appropriate staff, including Calvin, her son’s RA, know what was happening. Calvin would be near when she called that evening with the news, and his best buddy would be there, too.

At 5:30 the call was made. She said her son was initially very upset and crying but as they spoke he calmed down. After he hung up his housemates comforted him.

After supper her son asked Calvin if he could go over to Martha House and ask Anita and the ladies to pray with him for Grandpa Vic. Calvin said sure, so off he went with one of his house buddies. (The Martha House ladies are famously gifted in prayer.)

After visiting Martha House, he returned home, went about his routine, and went to bed.  The next day he was eager to share the news with me.  We talked a bit more about losing loved ones and it was clear he would need time to continue processing what had happened, but that he was well begun and feeling pretty secure in the world that remained.

It all made me think about the sad rainy night my mother died. I was all alone at the nursing home with her. Jerry was home with little Kelly.

There was nothing more to be done. Mom was scared and I was scared.  We didn't have a playbook for what was happening to us.

We sure could have used a Martha House that night.

The travellers have returned.

Kelly and Sterling headed off with Casey to fly to Kansas last Thursday, a trip they've made many times before but always on a direct flight.

Now there are no direct flights between KC and Austin, and even though the plane change was just at Love Field, we were nervous about their negotiating it all by themselves.  After thinking it over, we decided to send Casey, the Ranch Case Manager, along on the first leg to do some real-life training. 

Don't think I've never tried!  On many a flight together I would stand with Kelly at the Arrival-Departure boards doing everything but twisting her ear to make her look at them and locate our next gate.  All I ever got were eye-rolls and sighs of exasperation.  Moms don't get no respect!

Casey, however, enjoys an exalted status here at the Ranch among the Ranchers.  If Casey says it you can count on it then it's right and it's true.  Casey is their wise counselor, slayer of dragons, advocate, Jewish mother and Dutch uncle all in one.  Because she performs these roles with  elan, humor, and compassion they love her.  And they listen to her.

So off they flew.

I called Casey late Thursday to see how things had gone. She said that--somewhat surprisingly--Kelly had taken the lead in locating the flight and the gate.  The most confusing part turned out to be distinguishing between the arrivals and departures screens. 

Kelly found the flight and the gate, figured out which way to walk, and got them to the gate, which was just up the hall a ways.  Casey saw them off and waited for her flight, which got delayed for several hours.  She made the next one on stand-by, but then the flight crew discovered 10 minutes out that a baggage door had not been closed and the cabin wouldn't pressurize, so back to Love Field it was.  (No word on whether suitcases rained on De Soto and Red Oak or not.)

Yesterday they returned.  I'd told sister Carolyn to tell them to meet me in the baggage claim area.  In other words, I would not get a pass to meet them at the gate.  I wanted them to figure it out.

A few minutes after the plane landed my phone rang.

"Hi!" said Sterling.  "Where are you?"

"Downstairs in baggage.  Where are you?"

"We here," he said, irrefutably.

"You need to find the escalators and come down to where you get your bags."

"Okay."

Five minutes later the phone rang again.  "We not find it."

"Ask someone at a desk to help you," I said.  I was determined not to intervene by alerting someone upstairs to direct them.

Several minutes later the phone rang again.

"Hi!"

"Where are you?" I asked.

"Looking you talk on phone," he said impishly.

I turned around and there they were, grins wide as--yes--Kansas itself.

They already had their bags.  It had been 30 minutes since the first phone call.

Off we went to Subway for lunch and a recap on the vacation, and then back to the Ranch.  At Martha House Kyle and Alaina were just returned from visiting Kyle's family in Seguin over the weekend, and there was much back-slapping and general merriment as suitcases were hauled in.

Our plan worked out to be, all in all, a great success.  Small steps open up big adventures. 

And we're getting there.

Life Its Own Self

Once many years ago, when Kelly was a toddler, I was in conversation with a man from San Antonio, which has nothing to do with anything except that's the only thing I remember about him, aside from what I here relate.

When he learned my daughter had Down syndrome, he spoke of a family friend and his wife who'd had a baby with the condition.  Then he said, "Fortunately, the child died young."

Time froze.  My ears stopped hearing. 

My eyes were on Kelly as she sat on the carpet playing with a beam of late afternoon light that slanted through the window.

Hand in,
hand out.

Bright,
dark. 

Fingers open,

fingers closed.

I recall nothing more of the man's visit, not who he was nor why he was in my living room, what I said, or how long he stayed.  The curtain closes on that memory in deafened silence, with me staring at Kelly's hand:

Hand in, hand out.  Bright, dark.  Fingers open, fingers closed. 

Many years later, Jerry and I attended the funeral of a much-loved young woman who was among the first to come to Down Home Ranch.  She didn't have Down syndrome.  She seemed healthy as a horse.

Yet, unaccountably, one morning she died in bed shortly before dawn, and nobody ever knew why.  She was 30 years old.

At the funeral her dad was clearly heartbroken, but told us,  "My one consolation is that she went before me.  You know, that was my prayer for her, that she would always have me to look out for her and take care of her, so she'd have to go before me.  And my prayer was answered."

Jerry and I understood what he meant (after all, Down Home Ranch is our attempt to keep on taking care of Kelly after we're gone and we'd be lying if we said it wasn't true) but our hearts were breaking for us.  We loved this woman.  She was one of a kind--loud, funny, opinionated--a true character, and we grieved the loss of her.  There was no consolation for us in her death.

But that's the terrible path we walk--those of us with children who need us forever. 

Today Kelly flew off to Kansas with her boyfriend Sterling to visit her oldest sister Carolyn.  They are quite the accomplished travelers, given a packing list and enough numbers programmed into their cell phones.  Just to be on the safe side, since this is the first flight they've taken with a plane change on the way, we sent  Casey, our Case Manager, as far as Dallas to conduct an on-site training in gate-changing in hopes that next time they'll be able to navigate it by themselves.

In Kansas they will stay up too late, and laugh and giggle most of the night, and Sterling will exchange mock insults and barbs with (future) brother-in-law Bryan, who calls him "Sterling-darling" to annoy him.  They'll go swimming, to a movie, eat at Five Guys, and help a little with the farm chores (but probably not much).

In a hundred years, we'll all be gone.

Kelly is enchanted by bubbles

But Lord, while we're here, lead us in the dance.

Be Not Afraid

Last week was hard for me.  There was strife and I don't like strife.  There were disagreements and I don't like disagreements.  By the end of the week I was anxious and unable to sleep.

And fearful.

Never mind what's going on.  It's nothing that hasn't happened before and it will surely happen again.  The problem is that I let the fear eat me up, so much so that, not only didn't I avail myself of strategies to overcome it, I forgot they even existed.

Monday Jerry asked several of us staff to please reread the chapter of Covey's The 7 Habits of Highly Successful People, specifically Habit Five: "Seek First to Understand, Then to be Understood." 

I didn't.  Things didn't improve.

But Friday I was talking with a friend, who thanked me for putting him onto Don't Bite the Hook, by Pema Chodron, a series of CDs that deal with overcoming anger and resentment, both of which come from...fear.

"Oh!" I remembered.  "I should listen to those now."

Duh.

On Saturday friends arrived from Dallas.  I'd met them at a conference, and we spent the day walking around the Ranch, getting to know one another better, and discussing our spiritual journeys over dinner, which thankfully reminded me that I actually had one.

Then this morning they accompanied us to church--St. Louis Catholic in Austin.  I went in early to practice with the choir and on the way I listened intently to my CDs, beginning to reconnect with my saner self. 

We'd assured our friends that Fr. Larry was a superb homilist, so expectations were high, but I must say today he knocked it out of the park.

The gospel reading today concerned Jesus sending out the 72 disciples to do the work of the gospel in His name, and bearing His authority.

When time for the homily came, Fr. Larry moseyed out into the congregation and plopped himself down in a pew next to the parishioners.  There was nervous laughter, Fr. Larry being a stickler for liturgical correctness. 

"Just wanted to see what it looked like from here," he said.  "Looks different."

He then threatened to pass the preaching baton to a parishioner at the end of the pew, suggesting they "change roles" for a while.  He backed off before the man had a heart attack then and there.

Assuming his normal station at the pulpit, Fr. Larry then recounted two stories.

The first concerned the battleship which received an instruction to change course.  The commander replied, "Suggest you change course."

"Change course," came the reply.

"I'm in command of a battleship," sent the commander, "you change course!"

"I'm in command of a lighthouse," came the last communication.

The second concerned a man with three small children on a subway at night.  As he sat passively on his seat staring at his shoes, his children ran amuck, disturbing other passengers.

"Really, you should control those children!" said an outraged woman.

The man looked up and said, "Oh, I'm sorry.  It's just that we've just left the hospital where their mother died, and I don't know what to do."

Suddenly, in both cases, as with a kaleidoscope turning, all the facts fell together to form a very different version of reality.  The commander quite willingly changed course.  The woman was no doubt suffused with compassion.  The paradigm had shifted.

I recognized those stories right away.  They are both discussed in, yes, The 7 Habits of Highly Effective People.

"This is no coincidence," I thought.

Fr. Larry went on to explain what a paradigm shift the commission of the 72 disciples experienced.  Until then, they'd been followers, listeners, witnesses to Jesus' work.  Now they were being asked to assume a completely new role--to do the work of Jesus in the Name of Jesus, empowered by their faith in Jesus, who told them they should not fear, because He would always be with them, even unto the end of the world.

After communion, the choir sang Mozart's Ave Verum Corpus.  If I learned that heaven would consist of nothing more than singing the Ave Verum Corpus for all eternity that would be fine with me.

For post-communion, with the congregation, we sang My Country, T'is of Thee, today being the Fourth of July.  I choked up on the second verse and scarcely made it back in before the end.

The recessional was America, the Beautiful.  If there was a dry eye in the house, I couldn't see it for my own.

Guest organist Peter Guy, a hugely talented young Australian on concert tour, finished off with a postlude, Widor's Toccata.  All of the choir and most of the congregation stayed around to hear it, and as people finally began to filter out of church I caught up with Jerry and crew.  Our friends looked dazed, and Jerry quipped, "Heck of a show for a buck!" referring to an old stewardship joke.

Someone once said that the opposite of love is not hatred, but fear.  Fear leads us to lose faith--in ourselves and in others.  Fear cuts us off--from ourselves and from others. 

Fear is the siren song of despair.

I say mea culpa for falling prey to fear, and hope I've learned a lesson this week.  I give thanks for friends and faith, for my church and priest, for my husband's wisdom and patience, and all the good things that have brought me back home.

The sermons of Fr. Larry Covington are available through the church web site:

http://www.st-louis.org/homilies.htm

If I Needed You

Whew.

Yesterday was Jerry’s birthday, the end of a long month of family birthdays.

Out of 16 members of our immediate family (Jerry and I, our four daughters, three sons-in-law, six grandkids, and one grandson-in-law) nine of us are blessed with birthdays in the merry month of May.

(Actually, I suspect the really merry month was September, when the kids went back to school. "Another cup of coffee, hon'?")

Whatever, every year it’s like a second Christmas season, except this one doesn’t happen on one day, it’s spread from the third to the 24th, with three on the 15th alone! Generally by the time we get to Jerry’s, everyone is tired of revelry, and broke anyway, so not much attention is paid and then we all feel guilty and have to redeem ourselves on Father’s Day.

You can always count on Kelly, however, to make the day.

Not that she was particularly cooperative this year. Sunday I invited her and Sterling over for the birthday supper Monday night but—egad—Monday night is Wal-Mart night! How could Wal-Mart night have not been foremost in my conciousness!?

“It’s OK, Kel,” I said. “Just wrap your present for Dad and make him a card. Do you want to sing the morning song for him with me?”

“What time?” she asked dubiously.

“About 4:30 would be good,” I teased.

“Mo-om!” she groaned, stamping her foot. “We don’t sing at 4:30 in the morning!”

“Well, as soon as you get here then,” I said.

Monday morning we had important meetings starting at 8:00, so Jer was out the door scarce before I could plant a birthday kiss on the cheek, just as the whippoorwill was ending his morning serenade at Michael’s back window in Barnabas House.

At 6:35 I hear a knock on the door and Kelly is standing there in pajamas and slippers, clutching her present and the card she’d made for Dad.

“Sorry, babe, we missed him, but let me get a picture of you for him,” I said. Kelly balked  at this but the camera was handy so I didn’t detain her for long and soon off she pedaled, up the hill and back to bed.

When I read the card she’d made, I knew we had another masterpiece on our hands.

Kelly’s cards are always very creative, often touching, and each a true original. They usually manage to sum up with a request for the recipient to assist Kelly with managing some important aspect of her life.

Happy Birthday Dad

72 is a cool age

for

a

wonderful

special

dad

I’ve

got

since

1984

and

I

do

love you

very much

with all of

my heart and

my life too

I want my dad to be happy.

Jerry Wayland Horton

May 24th

1938

72 years ago

Your mom my grandma had a miracle is you Dad then you

were my mom’s birthing coach

got me out that

is why

how much Sterling loves

you a lot and so do I

you’re

always

going

to be my Dad forever

when you walk me

down the aisle

on

my wedding day

I want to marry Sterling

can you and Mom give me away to Sterling he will

take care of me I won’t forget to …(can’t make out last word.)

The “birthing coach” part is true. Jerry speaks often and eloquently about how very hard he worked as my birthing coach, fetching cups of ice, rubbing my back and feet, and performing other acts of mercy and kindness over the long hours of labor, which left him completely exhausted and in severe need of liquid refreshment.

But I digress.

Jerry and I went on to have a lovely evening together, just the two of us.

I’d picked blackberries and made a proper pie for him, and it turned out very well indeed. He opened his presents, over which he professed great delight—none more than Kelly’s and her card—and we picked up the guitar and sang a few tunes together just for old time’s sake, and learned a new one—Townes van Zandt’s "If I Needed You."

It was a sweet evening.

We do need each other, so much. We’re glad our girl has her place in the world that we’d dreamed of, and that Monday night is Wal-Mart night, and not to be messed with.

We are secure in her love, and in each other’s, and who could ask for more?

Going to Hell in a Wheelbarrow

“The world is going to hell in a wheelbarrow, and this is not going to do retarded people any good.” Dr. Wolf Wolfensberger, Mental Retardation, February 1994.

I was skimming the current (April 2010) issue of Intellectual and Development al Disabilities: A Journal of Policy, Practices, and Perspectives, the official publication of the American Association on Intellectual and Developmental Disabilities.


Whew! OK, one skims People Magazine. I was doing something else with the Journal.

In any case, when I came to the end of it I saw that Wolf Wolfensberger had a lengthy piece, “How to Comport Ourselves in an Era of Shrinking Resources.” I began reading and promptly felt like I’d been caught in the updraft of an F-6 tornado.

I’ve always admired and respected Wolfensberger. He’s an old-timer on the disability scene, long established by the time our daughter Kelly was born 25 years ago. He pioneered much of the early work examining society’s attitude toward people devalued because of their disabilities, and was one of a handful of people whose work and writings inspired us to build Down Home Ranch.

This current piece qualifies as a true Jeremiad, in the classic meaning of that term. It’s an unflinching analysis of social and economic trends, and of their implications for the lives of traditionally devalued members of society—those who are aged and/or ill, those with mental illness and intellectual disabilities, those who for whatever reason are economically unproductive. It is a prophecy of things to come.

Boiled way down, Wolfensberger’s conclusions are as follows:

1. Our national and world economies are fundamentally unhinged from reality-based principles that would ensure sustainability, with the result that they are in free-fall now and will continue to deteriorate until sane policies are restored;

2. In the historically “wealthy nations” birth rates have fallen so low that the proportion of working people necessary to fund social services, pensions, and other social obligations has fallen to unsustainable levels;

3. In part because of 2, above, social changes in the “wealthy nations” have been trending for decades toward a culture of “death-making,” i.e. solving the problem of the economic drain of unproductive citizens by preventing their birth through abortion (90% in the case of Down syndrome) or hastening their death through euthanasia (soon to be a favored option for us old folks);

4. The implementation of the theories and policies of academic institutions, advocates, and regulatory agencies have been more successful in ensuring the non-productivity of persons with disabilities rather than increasing opportunities for them to be productive;

5. Misuse of the tools of advocacy has led to absurdities in the funding of everything from cancer research to supports for adults with intellectual disabilities, resulting in enormous and indefensible disparities;

6. Traditional family values of thrift, sacrifice, faith, and self-reliance have caved before a culture that encourages debt, obsession with self, and pursuit of materialism;

7. In part because of 5, above, government agencies have assumed ever greater responsibility for meeting needs previously met by families, at far greater cost and with much less efficiency.

Wolfensberger then spells out his proposed remedies, at least insofar as ensuring that some decent level of care survives for people with disabilities. He is clearly not optimistic. He’s been through this before, in 1994, and was branded a lunatic at the time.

However, pretty much everything he predicted 16 years ago has come true, with startling (and depressing) accuracy. His voice resonates with me because I recall in 1984 gently rocking baby Kelly in the autumn sunlight that streamed through the window of the living room of our home in Austin, thinking about…demographics.

I knew where things were headed. That’s another reason we built the Ranch.

Warning: this piece is an equal-opportunity offender. No matter where you place yourself on the political spectrum, you are likely to feel skewered at some point or another.

But if you care about our people I strongly encourage you to read it carefully, think about it deeply, and share it with others.

Because our ability to protect the ones we love will depend on how we respond.

The Campers Are Coming! The Campers Are Coming!

As Denise reminds us every time we see her, there are only 27 days left until Ranch Camp begins. In June the first 50 or so campers of the season will tumble out of cars, vans, and buses, ready for a week of fun, friends, and activities.

Ranch Camp doesn’t get the respect it deserves. Naturally we tend to focus on our Ranchers; this is their year-round home, after all. But camp was our first program, created out of nothing in ’95 because we knew residency was still years away and we desperately longed to begin actively working with those we planned to serve.

Why camp? How important could a few days away from home in the country matter  much in the grand scheme of things?  You'd be surprised.

 I’m the one who pushed for camp, and I can testify to that, because when I was a kid, my camp gave me a vision and saved my life and sanity.

Shortly before my ninth birthday, in April of 1951, my father committed suicide after years of struggling with alcoholism and failure.

Like most such families, we lived in chaos, never knowing what to expect.  My grandmother, concerned about me in the aftermath of this tragedy, asked if I wanted to go to a girls’ camp in the Kerrville area for part of the summer. I don’t recall what I answered, but I wound up going to Camp Arrowhead for 5 ½ weeks, the first of several years I would attend.

What most kids learn in a family, I learned at camp—to trust the people in charge of my well-being, to follow rules in place for my own good, to relax in the company of friends, to be given the resources to learn new things, to know what to expect from day to day.

We ate in the “Filling Station” and got doctored at the “Pill Box.” We drew names to see what tribe we would be in (Pawnee or Kickapoo) and competed throughout the term for points to win a plaque.

We went to vespers on Wednesday evening and chapel services on Sunday. In the evenings we watched movies on the lawn and ate mountains of watermelon. I sang with the Pawnee Chorus and still sing the songs we learned.

I loved camp. I lived for camp. Even today, when I’m feeling stressed out, if I take a few minutes and think back to those warm sunny days spent on the banks of the Guadalupe—my holy river—I calm down.

So I know, deep down, how much camp can mean to a person. Even though we only get our campers for a week at a time, Denise and Don make sure they get the heart of the Ranch Camp experience--the friendships, the silly songs, the comforting routines, the chance to find out what you're really good at.  For a precious week, our campers build memories of happy times.

It’s their special time, their own retreat.  And it deserves all the respect we can give it.

Selena Mania!

In March I chanced to read an article in the Texas Monthly commemorating the 15th anniversary of  the death of Mexican-American singer Selena.  I did remember when she was killed, but had seen her at the time as a minor pop singer in whom mostly young people would be interested.

Needless to say, the article was heartbreaking, but more than that, it piqued my interest anew.

A few days later I took Sterling and Kelly to Wal-Mart, and chanced to pass by the rack featuring Spanish music.  There was a double album of Selena's hits and it wasn't expensive, so I bought it.

Wow!  I fell in love on the first song.  What a voice! What presence! What sureness! What musicianship!  I was hooked.  Soon Selena was booming on my car speakers wherever I went, and the joy of listening to her irrepresible renditions filled my days.

Kelly and Sterling liked it, too.  I told them about Selena and reminded them we had a movie about her in the library, but warned that it ended very sadly.

Kelly watched the movie that night, and asked me lots of questions the next day.  We've played the songs and talked a lot more about things I imagine a lot of people would really like to know: Why did that woman shoot Selena?  Is Selena in heaven now?  How old would she be now?  Is her husband still sad?

The answers I gave her?  "We'll never really know."  "I'm certain she is."  "38 years old."  "Yes, I'm sure he is, but he got married again, and guess what--he has a little boy with Down syndrome just like you!"

Then about two weeks ago I came out of my office and what do I hear but "...'Amor prohibido murmuran por las calles'..."  Selena!

"Who's playing Selena?" I ask.

"Me," says Natalie, "I love her."

Now all the Ranchers can talk about is Selena.  DVD sales are booming, Ranchers are clamoring for me to teach them her songs in Spanish.  We sing, we dance, we boogie to Selena.

Often the Ranchers want to talk about the unbelievable tragedy of her death and our hearts break anew.  How is it even possible that so much aliveness could be taken away? 

But I remind them that the light shines in the darkness, and the darkness will never overcome it.

And we best honor Selena by holding onto that, and by joyfully letting the gifts she left behind fill our lives.



Photo:  Selena, pictured in April 1994, for her Amor Prohibido Tour

Still Life

Waiting for the carpet cleaners to arrive, I was shuffling through boxes of photos and albums in our home office in Benedict House.

Naturally, I got distracted and soon was flipping through mementos of our former lives.

Dang! We were a pretty darned good-looking pair back in the day, despite eyeglasses the size of pie pans and clothing styles just recovering from the 70s.

Still, as Kelly always asks when she sees pictures of the younger me, “What happened?”

Well, life is what happened. We are old now, and—to quote the poet—covered with our lives.

But appearances are deceiving, as we know. We didn’t feel especially beautiful or handsome when those pictures were snapped, and we don’t feel especially old now that we are.

The reality of any stage of life is what’s going on inside, not what the camera catches. Shortly after those pictures were taken, Kelly was born and we learned that lesson big time.

Right after getting home from the hospital, our new friends Don and Jo Rettberg, parents of an eight-year-old boy with Down syndrome, advised us not to check out books on the subject from the library.

“They’re all depressing, and most of what they say isn’t even true,” said Jo.

But of course we checked the books out anyway, including one on “mental defects” that featured a young woman with Down syndrome, stripped naked, standing bewildered and alone under the harsh flash of the camera, glancing sideways down at the floor.

Welcome to the world, baby girl.

It could be that Down Home Ranch was conceived the moment we opened that book to that dreadful page.

Because Jerry and I had learned in the three short days of our baby’s new life that a diagnosis does not and never will describe a human being, and that the love burning in our hearts would be the true measure of Kelly’s life, and of ours.

That one photo kindled in us the fierce resolve to go anywhere and do anything to protect our girl and give her the life and the dignity she deserved.

And the young woman in the photo?

She has almost certainly passed on by now, but my heart still grieves for her.

How I wish I could let her know that we remember her, that we know how much more there was to her and to her life than that wretched photo, and how much she came to mean to us.

And that in part because of her, we built a place of beauty, and love, and dignity for those who followed.

Clueless in Central Texas

Someday I will write a job description covering every single item Jerry and I have had to develop some level of competence in while building Down Home Ranch, starting with trenching a sewer line (thank you yet again, St. David’s!) right on up through achieving licensure as an ICF-MR facility.

(All in all, just between you and me, I’d rather trench a sewer line.)

But never mind, today’s post is really about one skill set in particular, that of…detective.

Example: A few weeks ago Sterling’s mom Cecilia called me and said that Sterling had told her he didn’t want to live at the Ranch anymore and neither did Kelly so he was planning to go live with Cecilia, and Kelly was planning to come back and live with Jerry and me. Did I have any idea what he was talking about?

First I’d heard of it. I promised to do some sleuthing.

So I caught Sterling just as he came on duty in the barn and asked if I could talk with him. I asked him about what his mom had said.

“No,” he replied, “I not say that.”

Well, not in so many words, but was it true, I asked, that he didn’t want to live at the Ranch anymore?

“I love the Ranch. I do something bad?”

“No, no, no,” I said. “It’s just your mom said you called and she thought you said you wanted to go back and live with her.”

Sterling looked down at the manure fork he was holding and stubbed the tines into the dirt, a look of infinite sadness spreading over his face.

“I want to marry your daughter,” he said glumly.

A clue!

“So this has to do with getting married?” I asked. “What does that have to do with living with your mom?”

“Don say we not get married and be at Ranch.”

Aha.

I went in search of Don. He was busily sending his Operations staff off on daily assignments, and really needed me hanging around like a back-stage groupie. Nonetheless, I waited until he had a chance to catch his breath and said I was sure this was a misunderstanding, but… Sterling and Kelly thought he’d said that they couldn’t get married and live at the Ranch.

Nope, never said that. Didn’t know what they were talking about, couldn’t imagine what…oh, wait a minute.

He was in the truck a few days before with Kyle and Sterling, and they both wanted to talk about their girlfriends and when they would get married. Don had his mind on business at hand and said something like, “Guys, right now we’ve got Ranch work to do here and I’m not talking about getting married.”

Somehow this translated into: "You can’t get married and still live at the Ranch."

So. This business about going back to live with parents was the solution Kelly and Sterling had come up with to a serious problem.

Bless their hearts!  How awful that they’d thought they had to choose between the Ranch and everything they love about it—friendships, jobs, activities—and each other.

But it was a bargain they were willing to make.

I got them together at break time and explained what I was pretty sure had happened. Soon they were all smiles again.

Still, a mystery persists. We see each other every day. Why didn’t they ask me, or Don, for clarification? Why did they feel they had to face this and come up with a solution all by themselves?

I’ll probably never know, but it sure doesn’t lessen my admiration for their ingenuity in coming up with it in the first place.

Between a Rock and a Hard Place

Yesterday I took daughter Kelly to Wal-Mart to buy a new dvd player since hers had broken. (In case you weren't aware, an emergency of the first order!)

Half-way there Kelly asked me, "Why are we eating so healthy?" 

So we started talking about weight, and health, and exercise--not for the first time by any means.  Most of our residents struggle at least some with weight issues, and it poses a real predicament for us.  On the one hand, as adults they should have a significant degree of choice in this most basic human activity.  On the other, we're charged with exercising judgement and care when they can't (or don't want to) over things that impact their long-term health.

I recall a former case manager, Stephanie, who visited a diabetic camper who'd had to leave camp early because we couldn't control her blood sugar.  Stephanie has the world's softest heart, and she drove a considerable distance once the session was over to check on the lady, who weighed about 300 pounds and lived alone in a small apartment.  When Stephanie returned she said, "Judy, it just broke my heart.  Her whole house is crammed with candy and cookies.  Nobody's helping her control this disease."

During followup, she learned the camper did not have a guardian, and that her service coordinator had determined that they had no right to intervene.  The camper's right to choose the food she put in her mouth trumped the agency's duty to ensure her long-term health and well-being.  They did all the right things--training sessions, counseling, and education--and didn't feel they had any options to do more.

We run into the same issues with our guys.  (Oh heck, let's face it, we run into the same thing with ourselves.) 

But we're not giving up.  We're planning a major assault on fat and flab here at the Ranch, for everybody, not just the Ranchers.  We're writing grant proposals and talking to Weight Watchers and personal trainers.  We're investigating every nook and cranny of the Ranch and our activities to log where the extra calories come from, and determining how to limit them.

There has to be a way, and we have to find it.  People with Down syndrome are at high risk for diabetes and Alzheimer's, both of which can be influenced by proper diet and exercise, as can most disorders affecting the human condition.

 I'll be reporting on our progress.  Wish us luck.

Food images courtesy of Google Images

That Extra Chromosome!

Kelly's 25th birthday party in the Pavilion with all her buddies.

On a recent trip to Kansas, at about mile #569 a voice chirps from the back seat:

“Mom!”

“What, Kelly?”

“What does that extra chromo, chromso, chromodome do?”

                                  Above: Karyotype Trisomy 21

She was talking of course, about the extra 21st chromosome that causes Down Syndrome. Our talks about her disability had advanced into genetics (though I must admit my level of understanding is about on a par with hers.)
                                                                  
It’s been a long journey.                                     

As a very young child Kelly blended in seamlessly with the other kids at her Montessori school.

Later on, in public school, that innocent time was lost. Some classmates were kind, most indifferent, and some problematic.

Kelly handled the schoolwork itself well up until fourth grade, when the curriculum became more abstract and she began to fall behind.

Then one day her social studies teacher, wanting to pass on some good news in a year when it was becoming scarce, told me a story about what happened in the classroom that day.

The students had formed two lines for a history bee. The subject was life in Texas during the 1800s, and the question that fell to Kelly was “What did the cowboys take to Kansas on the Chisholm Trail?”

When the teacher read the question, she said that Kelly’s team began to moan and groan, thinking she wouldn’t know the answer and they would lose the bee. But Kelly hung her head and whispered shyly “heifers.”

Most of the kids on her team were upset, thinking she’d got it wrong. But a few ranchers’ kids started saying, “Kelly got it right! A heifer’s a cow. Cows are what they took. We win!” The teacher agreed.

A triumph, yes, but bittersweet at best, and the story itself enough to convince Jerry and me it was time to get Kelly into an educational setting where she could enjoy more success than failure. The next year we moved her into the Life Skills classroom at the middle school.

It was a good placement, and she did well there. And confronted with a wide array of disabilities in her new classmates, Kelly became more aware of her own.

We’d never hidden the fact that she had a disability, and its name was Down syndrome, but she’d never been that interested. Then one day she got out her Where's Chimpy book and stared at the pictures of the little girl who searched for her stuffed chimpanzee.

“She looks like me,” said Kelly.

“She has Down syndrome, too,” I said.

“Oh,” said Kelly.

So on and off we talked about it, and its causes, and that pesky extra chromosome, and although once during high school she declared hotly, “I don’t LIKE Down syndrome!” these days she seems pretty much at peace with it.

Maybe that’s because now most of her good buddies at the Ranch and off have it, too.

At Down Home Ranch we’re routinely accused of not “getting it” when it comes to our effort to build a community in which our daughter can enjoy a good life among friends with similar interests and abilities. The academics and agency people feel people with Down syndrome and other intellectual disabilities should live independent lives in the city.

Well, we checked out living options for adults with disabilities when Kelly was a toddler. We didn’t like what we saw. The people seemed lonely, often living with people they disliked or found threatening, having limited opportunities to go places and do things.

We wondered, “Where will Kelly’s circle of friends come from? Who will invite Kelly out for pizza and a movie?”

Friends of kids with Downs in high school reported they got lots of high fives in the hallway, but no invitations or offers of friendship, unless they were part of some organized (and always short-lived) project. After high school, most kids wound up sitting around the house with nothing to do, with a “tagalong life.”

You know, tagging along when others went about their errands or social life.  "Hey, Kelly.  I'm going to the library.  Want to come along?"

We thought our daughter deserved her own life, with the chance to make real choices, and earn money, and interact daily with a group large enough that she could pick her own friends.

That’s why we founded the Ranch, and it works.  If it stops working for Kelly or other Ranchers, we'll help them find a different model, but for most, right now they are able to enjoy their young adulthood like other young adults--learning to work, get along with peers, and have a rich social life.

Cold & Common Sense

Michael braves the chill!

Common Sense


January 7, 2009

The wind is howling, and the thermometer is dropping. The coldest temperature in ten years is predicted for tonight, so today will be spent getting ready. Every spigot, every potentially exposed pipe, a multitude of plants, and a Noah’s ark of animals must be protected.

And of course the Ranchers! Speaking of which, if you read the Ranch’s rules dictating what Ranchers must wear at any given temperature and under what conditions, you’d think we had lost our collective minds.

“What about common sense?” you’d ask.

To which we might well reply in exasperation, “What common sense!?”

After eight years of residency, we’ve learned that the notion of “common sense” is merely wistful evidence of wishful thinking. My turtleneck, gloves, and muffler weather could well be your signal to haul out the shorts and flip-flops.

So, we did what every good organization does in such circumstances. We wrote a policy, and made charts, and distributed them, and talked about them, and made dark predictions of what would happen should they be ignored.

Jerry tells the story of when he interned at Mt. Hood Community College as part of his requirements for his Ph.D. in Educational Administration.

The first day on the job, the president of the college walked into his office toting several board feet of binders, which he summarily dumped on Jerry’s desk.

“Here,” said he, “is the history of human failure at Mt. Hood Community College.”

And so it was, and so it is, and so it ever shall be.

When we came under state licensure, we came under statutes, rules, and regulations that rule out any need for common sense. It’s all written down in black and white. Follow it and you’ll be in good shape.

And we can’t disagree with 98% of it being as it’s intended to protect, defend, and assist those we care for.

The problem is, it’s possible to be in perfect compliance with the regulations and still not be a place anybody in his right mind would want to visit, much less live.

The nexus of the problem was identified several thousand years ago in the words, “The letter of the law killeth, but the spirit bringeth life.”

We walk a daily tightrope, following that letter and ever striving to bring life to the work we do and in many ways it’s the hardest part of what we do. When it’s 40 degrees, and the wind is blowing, and a resident refuses to wear a jacket, what do you do?

Regulations say he has the right to make a choice and suffer the consequences. They also say we have a duty to protect him from the consequences of his disability. What do we do?

Not to worry, this is a day when we will use our common sense!

The Packing List

January 1, 2010


The Packing List

Here at Down Home  Ranch, the Ranchers are filtering back from time spent over the holidays with their families. Not all left, but most did.

We’re all feeling a bit bloated from an excess of holiday feasting, and a bit off kilter from too much time spent out of our normal routines, despite the fact we’d longed to get away from them a while. I’m in a pensive mood, somewhat put out with myself.

Over the years, raising our daughter Kelly (who has Down syndrome) I’ve had to face again and again the real implications of Kelly’s disability, and just how serious they are. Each time it happens, it’s like a slap in the face, and always because of what I should have been able to see, but didn’t.

My latest little epiphany on this front happened because of Kelly’s coming to stay with us over the Christmas holidays. When I drove over to pick her up, she had packed half her very extensive music collection, practically all of her clothes, and everything else she could conceivably cram into a bag, a backpack, or a suitcase.

“Kel,” I said, “for heaven’s sake, you only need stuff for a few nights.” To this she gazed at me wonderingly and asked, “I do?”

“Yes, my dear,” I persisted, my death grip on logic showing in my tone of voice. “Remember, you’re only a few houses away. We can go over any time to Martha House if we need to get something else.”

“We can?”

Whatever, I thought, too much in a hurry and too distracted to pursue it. I ceded the battle and hauled all her worldly possessions to Benedict House, where Jerry and I live, and installed them in the guest room.

This packing issue had come up more and more lately because Jerry and I recently bought a small condo unit in Austin. Every six weeks or so Kelly, and sometimes her boyfriend Sterling, spend the weekend there with us. Each time we go through the “Why-did-you-bring-all-this-stuff-with-you-if-you’re-only-going-to-be-here-one-night?” litany. (We go through this with Sterling, too.)

Well, the week after Christmas we’d been planning to take Kelly and Sterling to San Antonio for a night on the Riverwalk, but things came up at the Ranch and we decided we couldn’t afford to be away for two days. So as to not disappoint the kids, we decided to spend the night at the condo and take them out to a movie and dinner.

This time, however, I had a bright idea. I’d give each of them a packing list: This and no more! I carefully typed it out, along with place to check off each item, gave one to Kelly’s RA and emailed one to Sterling’s mom.

They were thrilled to have the packing list. They followed it to the T. No muss, no fuss, no bother. And they were proud of what they’d done.

How could I have been so dense?!

When the light bulb finally came on driving back to the condo after picking Sterling up I could have banged my head on the steering wheel in frustration—not with them but with me.

They hadn’t been ignoring me when I told them vague things like “You only need stuff for one night” or “Just bring what you need.”

All along, they’d literally had no idea what to bring for how long. All I’d succeeding in doing was to make them feel bad about having tried their hardest to cover all their bases.

I’d set them up for a failure each time we’d gone through that charade.

So my New Year’s Resolution is to try, harder than ever, to experience the world through their eyes.

C. S. Lewis wrote that Montaigne became kittenish when playing with his kitten, but the kitten never discussed philosophy with Montaigne.

Kelly can never discern the world as I do. The burden is on me to try ever harder to discern the world as she does, given her significant limitations.

This might seem a rather sad and poignant starting place from which to launch the New Year. It might be if I didn’t know the many joys that await me when I do slow myself down and try hard to see the world through my daughter’s eyes.

But I do know. And much more on that in the days to come…