In the beginning...

Dr. Jerome Lejuene, discoverer of cause of Down syndrome

I discovered I was pregnant with my fourth child very early in February of 1984.  I was 42 and certainly not expecting to be expecting, but Jerry and I rolled with the punches and were soon changing our life course and making new plans.

Those plans didn't include the possibility of abortion.  The reasons for that are complex, because we were not members of any organized pro-life movement or organization.  It's more that we just loved new life, whether it came in the form of a seedling peeping up out of the ground, a litter of puppies, or...a baby.

So I rejected the amnio that would have told me our little one was busy developing an overabundance of chromosomes.  Midway through the pregnancy, I even had a mystical experience that I felt told me the baby would be a girl with Down syndrome.  But no matter. Life is life.  I figured if the universe bothered to tell me about it, it would tell me what to do about it.

In September of 1984, here came Miss Kelly Page Horton, 8 pounds, 7 ounces, bald and beautiful.  It was obvious from the moment she popped into the world.

Frankly, we were less than thrilled.  We were just getting back on our feet a few days later when we got news that she might have neo-natal leukemia.  At that point the mom and pop tiger genes in us rose up and roared and we knew we wanted this baby in no uncertain terms. 

When Kelly was five weeks old, the National Down Syndrome Congress convention came to San Antonio.  Daughter Martha and I drove down to see what we could learn. 

Talk about a revelation!  A doctor from the City of Hope in Duarte, CA, informed me that Kelly didn't have leukemia, but a "leukemoid reaction," fairly common at birth in Down syndrome.  He also said it would go away without treatment and she would bear no uncommon risk in the future.  Whew.

But we had also just received Kelly's karyotype, which showed, most curiously, four No. 21 chromosomes.  This was, needless to say, worrisome to us (and unheard of by our physicians).  If one extra chromosome could gum up the works, what would two do?

Fortunately, the very man who discovered the cause of Down syndrome was present at the conference. 

Jerome Lejuene was a French researcher, who in 1958 identified that an extra 21st chromosome causes the syndrome named after the man who first described it, John Langdon Down.

When I read that Lejuene was presenting a plenary session, I imagined he must now be very old, and I was surprised by the youthfulness and vigor of the man who stepped in front of the microphone.  In fact, at that point he was 57 years old; he had made his discovery at 34.

Unfortunately, the combination of his strong French accent, my own rather poor hearing, and the acoustics of the hall ensured that I caught very little of his message.  Still, I figured he would be interested in Kelly's karyotype, and I was interested in his take on it, so I stood in line to speak with him.

When my turn came he smiled and welcomed the paper I handed him.  He knew immediately of my concern, even before I said anything.  I will never forget his warmth and compassion as he explained that he felt certain she would develop typically as a child with Down syndrome.  I could feel that I was in the presence of someone very special.

First of all, he had come all that way to be with us, a random clutch of moms and dads with one thing in common.  It amazed me that he would do that.  I doubted that most scientists who had made a discovery of such monumental importance would bother much with the real-life consequences.

But as it turns out, Jerome Lejuene was far from typical in that respect.  In a sense, he spiritually adopted each and every child born with Down syndrome, and he cared deeply about their lives.  As pre-natal tests were developed to identify, and in most cases, eliminate the growing baby with Down syndrome. he began to speak out for their right to live.

The scientific community did not share his view, and over time he was in effect shunned, viewed as unprofessional, no doubt.

Yes, I was indeed in the presence of someone very special.  Today the Jerome Lejuene Foundation, established in his name, works on behalf of people with Down syndrome, funding medial research to work for "care and a cure." 

There is also a movement working to recognize the sainthood of Jerome Lejuene.  That he was one, there is no doubt.  I didn't identify it at the time, but it's what I felt in his presence: exceptional holiness.

He wrote:  Human genetics can be summarized in this basic creed:  In the beginning is the message, and the message is in life, and the message is life.  And if the message is a human message, then the life is a human life.

Amen.

Picture credit: Fondation Jerome Lejeune via Wikimedia (CC BY-SA 3.0).

The plot thickens

So.  As I sat in my office pondering what "three new rules" might mean and why we had not heard anything about them as stakeholders, there was a tap on my door.

It was my friend the surveyor.

"Mrs. Horton, I just wanted to make sure you understood the implications of what I told you."

I assured the surveyor I did.  We said our goodbyes, and I called Carol Smith, head of the Private Providers Association of Texas and asked her if she'd received any communications on this matter from DADs.  She had not.  We both started looking through our emails.

We didn't find anything so Carol said she would make some calls and get back to me.

We had success.  The proposed rules could have been drafted specifically to target Down Home Ranch.  They specified that individuals intellectual disabilities (IDs) who had HCS funding could not 1) live next door to another person with IDs; 2)  could not live next door to staff who provided them with care or educational and other services; 3) must live in what was considered a "typical" community.

That pretty much left us out of the running.  We'd built the Ranch to be a real community in and of itself, though certainly not one that excluded or shut out in any way the world at large. We constructed our Village to echo the old-time neighborhoods of years gone by, with staff, families, Ranchers, ourselves, and other intrepid souls who shared our vision.  If something went amiss, our Ranchers would have easy access to many people who knew them very well, and more important--cared about their welfare deeply.

And that's pretty much how things worked out.  The distinctions between us Typical People (TPs) (aka "individuals without intellectual disabilities") and our Ranchers have blurred over time.  Naomi loves to kill dangerous snakes, Tom and his guys love to play sports in the street in front of their house, Andrew likes to garden, Valerie likes to sit on the porch and watch the world pass by, I like to mosey around with my dog Jenny, and Michael and Brian like to drive down to the pecan bottoms and look for wild pigs and hootie owls.

The Three Rules were formulated to prevent people from winding up in highly regulated environments such as the state institutions that horrified the nation a generation before--places where the residents were inmates and their personhood obliterated, where they wore uniforms with numbers instead of their names and lived in dorms with no personal space.

Down Home Ranch is nothing like that and never was.

We decided to have a meeting with our parents to address this issue, that threatened to cut their family members off from having HCS funding if they stayed at the Ranch.  The parents were outraged.  Their kids had begged to live here.  They were happy and well cared for, and had lives in which they enjoyed an abundance of choices. 

The parents began to call their state representatives to ask for help.  They signed up to testify at some of the few remaining stakeholder meetings.  They were eloquent and sensible.  Pressure on DADS began to mount.

The Rules came about because advocacy organizations and the educational establishment had pushed their agendas long and hard.  In the minds of many in these organizations every soul with Down syndrome, or autism, or whatever else qualifies as a disability can only be happy living alone in an urban setting, whizzing about town on public transportation, and livin' the vida loca.

Hey, I knew that guy!  But he was the only one I have met to date.  And while I don't doubt others exist, the fact is we're talking about a huge range of functioning among people with IDs, not to mention a huge range of interests, tastes, and preferences.

What about those who want to live in a neighborhood, with easy access to friends and colleagues?  Who love working with animals and plants?  Who might want to join a monastery of monks or nuns?

Not a typical neighborhood, says DADS.  What about the King Ranch and the other iconic Texas ranches?  Our pattern of life is pretty much just like theirs.  What about farmers and farm life?

What about personal choice.  Really?

All to no avail.  We faced losing funding for half our residents.  They would have to leave the place they themselves had chosen.

Then came a phone call.  From the Commissioner of DADS. She asked that we meet the next day with her counsel, and with ours.

Next day, we took our seats in the large conference room of the DADS building.  We were three, plus the Commissioner and about a dozen others.  Proceedings were polite, if guarded, and the end result was the offer of 20 ICF beds and the suspension of HCS services at Down Home Ranch.

We asked for, and received, the unprecedented concession that if and when our residents currently holding HCS left the Ranch, their HCS would be immediately reinstated upon their departure.  We accepted the deal, conflicted and grateful at the same time.

We felt even more conflicted when our attorney murmured darkly, "ICF.  I don't think you guys can manage ICF.  It's the same as opening a nursing home."

But we knew we would, and eventually we did.  Thanks to DADS' action we were able to expand our residential program quickly, and our families had the assurance that their family member would be well cared-for without sending Mom and Dad into penury.  It was a huge concession from the state, and through it we learned that the heartless bureaucracy had a heart after all.

In fact, down the line we were granted four more beds for our ICF program to enable us to restructure into an economically more feasible configuration.

So....what's the problem?

The economic bust of recent years has forced governments large and small to look at new ways of doing things.  When the money spigot was flowing unimpeded, it was easy to envision rich models like HCS and ICF.   Ironically, for all its heralded benefits, HCS was designed from the outset to be at least 20% less expensive per client than ICF, yet with a wider range of choices.  (Residency on a ranch, alas, not among them.)

The number of people in these programs nationwide is only a fraction of the number awaiting services of any kind, and people with intellectual disabilities are aging at the same rate as he rest of us.  Huge numbers of adult children with IDs remain at home being cared for by their elderly, increasingly frail parents.  Agencies have struggled to meet the needs of the population but the funding simply has not been there for them to do so and is not getting any better.

HCS was an attempt to loosen up the rigid framework of ICF (more about that later) and provide families with more choice for less money.  Concessions on the family's part lay primarily in retaining a bit more risk and responsibility than under ICF.

The Centers for Medicare and Medicaid Services, CMS, is the federal agency responsible for oversight of state agencies such as DADS, and it was a ruling from CMS that DADS was responding to when it came up with its interpretations that would make it impossible for Down Home Ranch to continue with HCS at the ranch site.  (The Ranch retained its provider status and later opened two HCS homes in small towns close to the Ranch.)

So.  Families with adult children with IDs, faced with dwindling public resources, like Jerry and I 25 years ago (for we saw the handwriting on the wall even back then), are taking matters into their own hands.

Living day by day with their children with Down syndrome, autism, and other disabilities, these families understand all too well the challenges of providing adequate lifetime care for them.  They are also running up against the realities of their children's lives as opposed to the pipedreams of the professionals and academics.

(to be continued) 

It's your choice! (Or is it?)

"Hey, Buddy!  I'll take you to get some ice cream.  We'll go anywhere you want as long as it's Baskin-Robbins, and you can have any kind of ice cream you want as long as it's vanilla!

"It's absolutely your choice!"

This is the message of your federal government, as articulated by Mark Olson, head of LTO Ventures and the single father of an 18-year old daughter with severe autism. 

Some choice, no? 

I'm getting deja vu all over again.  Here at the Ranch we've been through this before, you see.  Here's our story.

In 2007 Down Home Ranch was up and running on a modest scale.  We had three homes open at the Ranch, each with three residents apiece, all having decided after attending Ranch Camp that this is where they wanted to live.

There we were, we band of brothers and sisters, we happy few.  Then the apple appeared in Eden, and of it we did eat.

It appeared in the form of what is known as an HCS waiver, funding "provided" by the federal government for "services" for "consumers" with what we now refer to as intellectual disabilities.  A new resident had this funding, which the family had waited for for a decade or so, and they didn't want to lose it.

In order not to lose it, they had to use it.  To figure out how to use it we convened a meeting of the young man's case manager and program director, employees of the agency administering the waiver.

In our two-hour conversation I half expected the March Hare to wander in at any moment.  Following is my mental reconstruction, what today we call the "take-away."

Program Director:    The HCS was designed to offer maximum choice to the consumer.  that's why families want it and it's so valuable.

Down Home Ranch:   That's fabulous.  Choice over what?

Program Director:   Housing, jobs, friends...every aspect of life!

Down Home Ranch:   Great!  So how does "Sam" use his HCS?

Program Director:  He will have a paid companion come and pick him up and take him on community outings.

Sam:   Can Adam [best friend and housemate] go with me?

Program Director:  No.

DHR:  Why not?

PD:   Only a non-disabled friend can accompany Sam on a community outing.  You see, the whole point is to eliminate segregation of people with disabilities.

DHR:  But he wants his best friend to go.

PD:   I'm sorry.  That's not possible.

Sam:   I don't want to go.

But, Sam had to go anyway, in order not to lose his services, which he didn't want to use.  (Perhaps they went to Baskin-Robbins...)

If the tale had ended there, it might have been better for all concerned.  But, it didn't.  We tasted of the Kool-Aid and it was sweet.  We became more involved with HCS for a very important reason.

Back up time.  We'd always envisioned the Ranch as a place for those who wanted to live there, regardless of ability to pay.  That lasted about six months into the residential program when we realized just how expensive direct care is.  The Board imposed a fee to parents on a sliding scale.  It helped. 

We were aware, however, of the financial strain it imposed on our families, as moms who had been retired for several years elected to return to employment.  The long-term picture looked a little wobbly, financially speaking.

Other Ranchers' names began to come up on the HCS waiting list.  It was determined that if we became official providers they could receive funds for supervised living and other services, so Jerry and I attended meetings offered by the Department of Aging and Disability Services (affectionately, or not, known as "DADS"). 

The day Katrina hit New Orleans Jerry and I went for the final sign-up and exam, administered to make sure we knew what we were doing.  He had decided that since I would administer the program I should take the exam.  Somehow I managed to pass it and we were in business.

One after another of our Ranchers got their waivers and soon over half were supported by the program.  All seemed well for two years. 

Then one day during a routine inspection by DADS of our houses and programs, I escorted one of the surveyors through our new, spotless Barnabas House, where each Rancher had his own large private bedroom.  The surveyor had been there for two days, and as we exited the house turned to me and said, "You know, I've heard about this place and I was very dubious about it, but now I get what you're doing.  I really get it, and it's beautiful."

Later that evening, after finalizing the exit interview with our case manager, the surveyor stopped by and said: "Mrs. Horton, I just wanted to let you know about three rules about to be implemented that might affect your ability to offer HCS services here at the Ranch."

And so began an adventure.

(To be continued)

Last night was the Gala, the second act of Down Home Ranch’s big annual fundraising weekend. 

Friday was brisk, clear, and breezy, but not too much so for a great day on the golf course.  About 130 golfers played, or played at, 18 holes on the beautiful Avery Ranch course.  All went off without a hitch, according to those who should know.

Saturday dawned cloudy and chilly, and we had all day to get ready for the Gala, held at the Bob Bullock Texas History Museum.  The Lt. Governor’s widow, Jan, graciously served as our honorary chair of the event, although she was unable to attend in person.  Still, it was very special looking around the beautiful interior, all decked out for our gala, and knowing we had her blessing for this event.

The gala followed weeks of meetings and reviews of the “run of show.”  Kristin and Andrea were ready at the payment table, and Kristin’s twin sister Krystal, their mom, and Casey held down the reception desk.

Seventy or so items were laid out for inspection with their bid sheets in the silent auction area, and the catering lines were ready to go.  Jerry fretted about my speech (but not his). 

We conferred with Andrew, the auctioneer/MC, on last minute details before getting ready to launch the serious part of the evening: matching a $100,000 challenge grant from the Still Water Foundation of Austin.

Then a most delightful cog slipped in our well-oiled machine... 

A dear friend of the Ranch surreptitiously handed us a letter outlining a complex offer to match dollar for dollar the first pledge of $10,000 made that night, and also the first pledge of $5,000.  After that he would pledge $2,500 for each pledge of either up to a personal investment of $50,000.

He wished to remain anonymous.

When it was time for the “Paddles Up” portion of the evening, Andrew played the video  prepared for the evening—a lovely short piece consisting of clips of our Ranchers at their work.  Then I stood to prep the audience for the evening’s ask.

I led off with an overview of the importance of our work program to our Ranchers.  Fees for service paid by Medicaid funds cover housing, food, and staffing, but although there is expectation imposed for some sort of day program for the “consumers” receiving services from the state, there is no money to support such a program.

That’s why so many adults with intellectual disabilities sit around coloring or sitting on the couch watching TV. 

But we’d figured from the outset that a Ranch setting was one with a skill level for everyone, and there was no reason at all that our Ranchers would be unable to contribute substantially to the work of the Ranch—from birthing calves to working in the kitchen.  That’s what we’ve always worked toward, even though frankly it would be cheaper to hire people who already know how to do these things rather than train our Ranchers to.

And now the grant from the Still Water Foundation would enable us to take a gigantic leap into the future, if all went well.

So I spoke a little about the importance of work for everyone, how it puts our Ranchers on an even footing with the rest of the world to have a job, be good at it, and earn a paycheck in the process.

I had Mike Larcher stand up, and told about his pride in scooping horse poop, even to the point of proudly proclaiming one morning to me, “Look, Judy, they made more!”  The little story got a laugh, as I knew it would, and Mike stood and beamed.

Then I mentioned our chickens, and how they were supplying the whole Ranch with eggs to consume, and eggs to sell.  “They’re laying 90 eggs a day now,” I said proudly.

Then way back in the crowd, a familiar figure stands up.  It’s King, aka the “egg man,” who cares for the chickens, even driving down nightly after supper in his golf cart to lock them up safely for the night.

“They’re not laying 90 eggs a day, Judy,” he admonished sternly.  “They’re laying 100 eggs a day!” 

The crowd laughed and applauded.

Then it was time for Paddles Up.

We knew there would be a $10,000 pledge, because we were prepared to make one.  We recently sold our condo in Austin and figured it could serve as part of our tithe, so Kelly was all set with our bid paddle to pop up when Andrew called for a $10,000 pledge.

Oops, a man at the next table, a fellow parent of a child at DHR, surprised us!  His was the $10,000 matched by our generous benefactor.  Ours was the next and last.

Then at the next table, a dear friend pledged $5,000.  Swiftly following that, pledges were taken for progressively smaller amounts (but which, of course, mounted up in higher numbers).

Our good friend who’d pledged the $5,000, possessed of a puckish sense of humor, began “matching” the pledges coming in with a quarter.  It got a laugh each time.

But then something magical happened.  The Ranchers in the audience, seeing that Andrew was accepting 25 cent pledges, realized that they, too, must be in the running, and began bringing their quarters and dollars (and even a silver dollar coin!) to Andrew.

This was nothing we could have, or ever would have, planned.

Our puckish friend was engaged in a little mischief.  But our Ranchers were acting in dead earnest to meet our goal.

I leaned to a table mate and whispered, “We’re seeing the widow’s mite in action.”  With tears in my eyes, I admit.

By the end of this glorious evening, we, and friends assembled, had met the $100,000 match dollar for dollar, with funds left over, thanks to our Ranchers. 

After that, it was party time, as we danced everything from the conga line to the hokey pokey to the great music of the Aristocrats.  Usually it’s our Ranchers who dominate the dance floor, but last night twice as many guests as usual joined in the fun.

I heaved a sigh of relief and made some lame jokes about attending someone else’s gala so I could have fun and relax, eat, and buy things at the silent auction—none of which I’d done at ours.

But that’s ok.  I witnessed the hearts and souls of our Ranchers in action, and saw clearly that they understand what we’re all trying to do together, they get it, and they want it.

And no event could deliver more than that. 

A Christmas Miracle (very small one...)

Okay, folks, it's time to get blogging about the Ranch again.  Things are happening big time around here.

For example, we had a Christmas miracle all our own.

For weeks when Cathy has been tending the chickens at night, closing them up warm and cozy in their hutch, she has noticed that one is missing.  Still, when she counts them during the day they all would seem to be there.  Very strange.

On the other hand, they all share a distinct family resemblance, and they are very busy, so it is hard to count them.

But  on the morning after Christmas, the mystery was solved when Cathy found a mama hen and several tiny yellow chicks close to the giant Carolina jasmine bush nestled against the Learning Center. 

Amazingly, Mama had set on her clutch of eggs for many days and escaped the various varmints constantly on prowl--cats, possums, raccoons, and foxes--and hatched a dozen or so babies successfully.

We hustled them into an empty coop and Cathy made the dash to Tractor Supply in Taylor for a small waterer and feeder set, shavings, and some chicken chow where Mama can raise the babies in safety.  One little guy that was not doing too well was taken in hand (literally) by Ashley to tend in the warmth of her cabin.

Mama seems as proud of herself as we are of her.  The lady at the Tractor Supply told Cathy, "You take good care of that mama.  She's got the right instincts and a lot of them don't, 'cause they're just bred for egg production."

We promise.  We will.

And our little ones will join a whole host of others as they grow up.  The week before Christmas we took delivery on 100 young laying hens to stock our "chicken tractor," a mobile chicken house with nesting boxes that can be relocated at will into various areas of the Ranch, enabling the chickens to free range during the day and be safe at night.

But for now they're tucked away in their nursery, safe from harm.

And we are inexplicably totally delighted with our little Christmas miracle.

Growing up on “The Farm” - Memories of Travis State School



Cathy Belliveau, Program Director
Down Home Ranch

I often wonder how we got there, and how it was that we all came to be created by that place, changed forever by our years there. 

It was as if I were meant to be there.  Even in my earliest years  I loved tagging along with Dad to the “Farm,” as a girl full of curiosity would, wanting to understand what goes on from 8-5 in the parent world.

Camp Days

It was Narnia and Disneyland all in one place, with a bit of 1984 thrown in on occasion.   It could be a nightmare but in the best years it was mostly a haunting wonderland…something fragile and dark, full of beauty and tinged with sadness, all wrapped up in a sensory overload jumble.  I see it now as captured in a giant snow globe.  Surreal and locked the memories stir when I shake them in my mind.  

It is so hard for anyone to understand who had never been there.  

To understand, you had to breathe it in…let the place seep into you to experience the sense of awe it still holds for me.  It brings me to tears even after all these years: That Farm on the hill, holy depository for the broken and the lost, the loved and the rejected, the home.  It was the playground of my teen years…my rite of passage to adulthood.  It is a big part of who I am, and a big part of me was left behind, inside those gates.

I was thirteen when I first came to the Farm.  It took a while to take everything in and allow it to enchant me, as it had so many others who dedicated their lives to the care of the people on the Farm.  I went there every chance I had.  I spent my summers there teaching and being taught.  It was the best growing up place anyone could ask for.

After all these years it is still the Farm I think of when I recall the proudest moments in my work.  I still see the faces and hear the voices….calling me back over all those years to the past.

 Their faces come back to me—bringing smiles and tears.  I see the hands of the children and those of the elderly, all needing, yet all giving.  

The Farm started as a true farm community in 1933 for those society felt needed a separate home away from the rest of us.  At first it was just for men with mental disabilities, but it expanded in my years there to open the doors to women and some children.

Cathy volunteering at Special Olympics

The older men would tell me stories of growing vegetables and working in the fields below the main campus.  That was before my time. 

How proud they were of their work and how they missed the productive years, before the rules changed and the powers that were took the farm work out of the farm and left in its place the institution.

These old gentlemen should have been someone’s grandpa….so they became mine, and I will never forget them.  And in my mind’s eye I see my red headed  six year old, with his brown vacant eyes and one hand stretched out as if searching for something.  He whirled around in his dance for one….laughing at the wind….oblivious to my presence.  How I longed to reach him and unlock the child and set him free…but in a way he was already free…free from the world that could be so cruel to someone so different.



Santa paid a visit

I remember Christmas on the Farm, with parades and bands and hundreds of smiling faces wrapped up in holiday joy.  In the summertime there were watermelon days, paddle boat races and swimming in the pool. 

We loved Halloween so much we dedicated a an entire month to prepare for it.  Staff worked tirelessly to create costumes, a haunted house, and a carnival with candy apples and games of chance. There was not a single holiday we didn’t celebrate and go all out for.

In some ways it was all such a perfect safe haven. 

But not always.  Like any loving but sometimes dysfunctional family there were hard days and times it was difficult to smile, but they were few enough in my day.  The hugs and the loving words made up for the black moments when someone forgot our purpose.  We were family to each other and to the people who lived there.

The lessons we learned about unconditional love and acceptance were gifts we all received.  Those gifts are cherished to this day, and will be remembered as long as I have any memory at all.



The pond at Travis State School

It is difficult—no, really it’s impossible—to convey the depth of love many of us had for the people and for the place.

The Farm was closed forever in 1995, shut down by people who didn’t understand what it had been able to become over the years: a sanctuary.

Shut down by people with fancy theories but precious little real experience in living and loving people with a label.

Shut down, but never forgotten.  But not by me, and not by the hundreds of other people who lived and worked there.

The Farm will always be the haunting, mystical place on the hill that changed us all.

C. Belliveau

Moving forward

Somebody please tell me where October and November went? 

I checked out on 10/19 and got over the anesthetic about 36 hours ago, it seems.  The world went on, and apparently I had conversations I recall nothing of, and am delighted to hear I have agreed to a date at the opera in Houston next year!

So, since coming home it's just been hanging around getting over the Big Slice...  My Halloween surprise this year, and it looks it.

Sunday Jerry and I ventured out to church, and I sat in the pew with Jerry and listened to our magnificent choir and our terrific preacher. Only missed one Sunday in the whole ordeal!  Got seasick in the car for the first time but it quickly passed.  Later in the day my friend Maria came over and took me to get my shingles vaccination, having convinced me that among my other woes, I really don't need that one.

Then today Kyle came over and we caught up on our life adventures, went out for a bit at Cover3 in the 65 degree weather with the warm sunshine on my shoulder.  Oy, I feel a country song coming on...

Afterward I had Kyle take me to get a buzz cut on the hair.  I'll see Kelly tomorrow, or--more to the point, Kelly will see me tomorrow--so I promptly took a picture of myself and put it on Facebook, hoping to lessen the shock of seeing me for the first time.  We've broached the "c" word with Kelly now, and she knows I'm going to have chemo and will lose my hair.  Jerry feels I went a bit extreme, but I feel it will lessen the shock when it starts falling out for serious.

We've encouraged Kelly to go ahead and have Thanksgiving with promised-one Sterling and his family this year.  Sterling's folks moved to Galveston several years ago just in time for Ike to wipe their home and his step-dad's job off the map.  Since then they've been regrouping and finally have built their dream house in Elgin, after a long stretch in the RV.  It's a very exciting Thanksgiving for them, with all the grandbabies and family. 

Sterling and his family are a vital part of Kelly's network of support, and again, we are actively taking advantage of this episode in our lives to strengthen it.  Kelly has known the family for as long as she can remember.  She  loves them and they love her.  They are our older daughters' ages and will be here when we are gone.

I can hardly wait to start hugging all my buddies at the Ranch.  We've had a virus going around and I've stayed away as long as I can to avoid it.  But now...it's time. 

Wondering, Part III

Jamaica 4

Sunday, September 4 2012

I am awake at 4:00 and shower in the upstairs bathroom.  We don't need to be up until 6:30 today and we are aware of this fact, but still people begin rising in anticipation of our last day in Kingston around 5:00.

The plan for the day is to clean up the large chapel in anticipation of Mass, so the guys will need to temporarily clear out their cots and mattresses and help set up chairs.

We will not go to Mass here.  We will return to Bethlehem and the Lord's Place to help the residents get ready for Mass in the huge chapel on the grounds there.  Then we will be taken with other first time volunteers to Sacred Heart, where the Brothers live, for lunch.  

I pack everything up and strip my cot, as Jerry and I have made a reservation at a hotel, and will leave after lunch.  We have Morning Prayer, and then hang around the Holy Innocents compound until time to leave.  We enjoy the garden there for the first time, and marvel at the tropical vegetation.

We are assigned again to The Lord's Place.  By now some of the residents are familiar with us, and they greet us with enthusiasm.  The place has been transformed since the day before and erupted into a joyful frenzy.

My little girls with Downs, who have stolen my heart, are bustling about helping less able residents pull on clothing and find shoes.  The fearsome aunties are not to be seen, and the auntie on duty is patient and careful.

There are several Brothers on duty this morning, and I am thrilled to see them hugging and joshing with the residents, who clearly love them.

Still, it's a mess.  The residents do not own any clothing, and must take pot luck.  It's clear that some are vying for a particular dress or blouse to wear this week.

A wiry little resident named Bethany, black as ebony and clearly possessed of impressive organizational skills, bustles about issuing orders, which likely as not are ignored.  

A cabinet is opened.  There are stacks of new skirts that look like they came from the wardrobe of the Ballet Folclorico de Mexico.  They are sateen, flared, with three tiers of wide, colorful stripes.  In another cabinet are new pink golf shirts obviously donated following a charity golf tournament in the States, as they bear the logo of a church.  The combination is bizarre, to say the least, but becomes the favored fashion of the morning.

The little Downs girls dress identically and braid each other's hair.  (They are two of the few residents allowed to keep their hair.)  

The auntie on duty works with Amanda, from our group, and more seasoned volunteer from another.  Bras are issued for the day; the residents are thrilled and happily pull up their shirts to show me.

Some women are rubbed down with lotion before dressing, while others are powdered.  Then the hunt for shoes that fit, or that at least can be tolerated for the duration of Mass, are found and issued.

A final spritz of perfume and we are off to the races.  Bethany takes me in hand and shows me the way to the chapel.

We arrive early and are told to sit up close to the front.  Decker is seated  on the first row, with Samuel in his arms.  Samuel is the size of a two-year old, but has Downs and I estimate his age at about four.  He clings expertly to Decker and surveys everything and everybody with acute attention.

The pews are jam-packed into the Chapel, and every pew is full.  There is scarcely enough room to stand up, the pew in front of us is so close to us, but we manage.

Jamaica 4

An elderly Jamaican man is just finishing leading the Rosary, a hymn is announced, and the joyful procession begins.  There are 40 Brothers in the choir and 20 more m

Sunday, September 4 2012

I am awake at 4:00 and shower in the upstairs bathroom.  We don't need to be up until 6:30 today and we are aware of this fact, but still people begin rising in anticipation of our last day in Kingston around 5:00.

The plan for the day is to clean up the large chapel in anticipation of Mass, so the guys will need to temporarily clear out their cots and mattresses and help set up chairs.

We will not go to Mass here.  We will return to Bethlehem and the Lord's Place to help the residents get ready for Mass in the huge chapel on the grounds there.  Then we will be taken with other first time volunteers to Sacred Heart, where the Brothers live, for lunch.  

I pack everything up and strip my cot, as Jerry and I have made a reservation at a hotel, and will leave after lunch.  We have Morning Prayer, and then hang around the Holy Innocents compound until time to leave.  We enjoy the garden there for the first time, and marvel at the tropical vegetation.

We are assigned again to The Lord's Place.  By now some of the residents are familiar with us, and they greet us with enthusiasm.  The place has been transformed since the day before and erupted into a joyful frenzy.

My little girls with Downs, who have stolen my heart, are bustling about helping less able residents pull on clothing and find shoes.  The fearsome aunties are not to be seen, and the auntie on duty is patient and careful.

There are several Brothers on duty this morning, and I am thrilled to see them hugging and joshing with the residents, who clearly love them.

Still, it's a mess.  The residents do not own any clothing, and must take pot luck.  It's clear that some are vying for a particular dress or blouse to wear this week.

A wiry little resident named Bethany, black as ebony and clearly possessed of impressive organizational skills, bustles about issuing orders, which likely as not are ignored.  

A cabinet is opened.  There are stacks of new skirts that look like they came from the wardrobe of the Ballet Folclorico de Mexico.  They are sateen, flared, with three tiers of wide, colorful stripes.  In another cabinet are new pink golf shirts obviously donated following a charity golf tournament in the States, as they bear the logo of a church.  The combination is bizarre, to say the least, but becomes the favored fashion of the morning.

The little Downs girls dress identically and braid each other's hair.  (They are two of the few residents allowed to keep their hair.)  

The auntie on duty works with Amanda, from our group, and more seasoned volunteer from another.  Bras are issued for the day; the residents are thrilled and happily pull up their shirts to show me.

Some women are rubbed down with lotion before dressing, while others are powdered.  Then the hunt for shoes that fit, or that at least can be tolerated for the duration of Mass, are found and issued.

A final spritz of perfume and we are off to the races.  Bethany takes me in hand and shows me the way to the chapel.

We arrive early and are told to sit up close to the front.  Decker is seated  on the first row, with Samuel in his arms.  Samuel is the size of a two-year old, but has Downs and I estimate his age at about four.  He clings expertly to Decker and surveys everything and everybody with acute attention.

The pews are jam-packed into the Chapel, and every pew is full.  There is scarcely enough room to stand up, the pew in front of us is so close to us, but we manage.

An elderly Jamaican man is just finishing leading the Rosary, a hymn is announced, and the joyful procession begins.  There are 40 Brothers in the choir and 20 more make up the instrumental ensemble, with guitars, drums, bass, keyboard, and a riot of rhythm instruments.

At last Mass is ready to begin.  The Brothers announce the song and the chapel erupts with joyful song.  Everybody begins to sway and clap and sing.  The bamboo cross passes by and little Samuel, in Decker's arms, waves his little arms in perfect time to the beat.

And so it goes for two solid hours.  I am moved, I am relieved, I am restored.

I am reminded of my favorite scripture:  "God will restore the years the locusts ate."    Like a kaleidoscope that takes a quarter turn, the whole picture of my experience in Jamaica has shifted.  

Where there was despair, there was now hope, and Jerry and I agreethat we will find ways to help the Brothers in their work.

Thanks be to God.

ake up the instrumental ensemble, with guitars, drums, bass, keyboard, and a riot of rhythm instruments.

At last Mass is ready to begin.  The Brothers announce the song and the chapel erupts with joyful song.  Everybody begins to sway and clap and sing.  The bamboo cross passes by and little Samuel, in Decker's arms, waves his little arms in perfect time to the beat.

And so it goes for two solid hours.  I am moved, I am relieved, I am restored.

I am reminded of my favorite scripture:  "God will restore the years the locusts ate."    Like a kaleidoscope that takes a quarter turn, the whole picture of my experience in Jamaica has shifted.  

Where there was despair, there was now hope, and Jerry and I agreethat we will find ways to help the Brothers in their work.

Thanks be to God.

Mulling it all over

Jer and I got back from Jamaica late Monday.  Tuesday and Wednesday I caught up on a bit of work at the Ranch and Thursday we went to Houston to hear a lecture by Fr. Robert Sirico, President and Founder of the Acton Institute.

That these events happened so close together is providential. 

The mission of the Acton Institute is to defend free enterprise not only as the best, but the only, hope for material comfort and political freedom for the people of our world.  Free enterprise alone sets the stage for the creative flowering of art, technology, literature, and the true exercise of moral choice. 

I know many who read this statement wish to debate this premise, but the Acton Institute does that so much better than I that I beg you to go to their site and read their materials and arguments with an open mind.

Suffice it to say that the long-term solution for what I saw in Jamaica has to be free enterprise resting on a firm foundation of moral and ethical values.

In our end-of-day discussions, we touched on that as I explained to my co-volunteers the tremendous effort we put in at Down Home Ranch to ensure that our Ranchers have meaningful choices over what happens in their lives.

More than once I muttered sadly, "I guess it boils down to the fact that countries exhibit about as much compassion as they can afford."

And that is the bald, ugly truth.  The Brothers of the Missionaries of the Poor work ceaselessly to ensure that the people we met and briefly cared for have the basics of life in a society where the vast majority of people have very little more than that and many have much, much less.

Jamaica is ruled by thugs and gangs.  The daily newspaper is little more than a catalog of mayhem from the preceeding 24 hours and stories of the devastated famililes left behind.

I met a man from Canada at the airport on our last day.   He owns a health-food business in Vancouver and was on a scouting expedition to Jamaica wishing to start a large farm to help supply his company with product.  He estimated needing 75-100 employees.

"But I don't know," he said, shaking his head.  "The corruption, the graft, the violence.  I would have to hire so much security just to do business.  I just don't know if it's workable.

"I really hope I can find a way," he added.  "The Jamaican people are so full of life, so energetic, so smart.  But I just don't know if I have the expertise to do business in these circumstances."

What does that have to do with the 550 people served by the Missionaries of the Poor?  Everything.

Absolutely everything.  Those 550 people are in the custody of the Brothers because their families can barely feed themselves, and have no means to care for a person with disabilities or mental illness.

Economics has way more to do with the choices we make on a daily basis than we are comfortable admitting.

The Brothers understand this, coming as they do from countries where there is rampant poverty.  They have chosen to be Christ's hands in ministering to the poor.  They have chosen poverty themselves.

Please say a prayer for them today, and for Jamaica.

Reference:  Defending the Free Market: The Moral Case for a Free Economy, by Fr. Robert Sirico

Wondering, conclusion

Jamaica 4

Sunday, September 4 2012

I am awake at 4:00 and shower in the upstairs bathroom.  We don't need to be up until 6:30 today and we are aware of this fact, but still people begin rising in anticipation of our last day in Kingston around 5:00.

The plan for the day is to clean up the large chapel in anticipation of Mass, so the guys will need to temporarily clear out their cots and mattresses and help set up chairs.

We will not go to Mass here.  We will return to Bethlehem and the Lord's Place to help the residents get ready for Mass in the huge chapel on the grounds there.  Then we will be taken with other first time volunteers to Sacred Heart, where the Brothers live, for lunch.  

I pack everything up and strip my cot, as Jerry and I have made a reservation at a hotel, and will leave after lunch.  We have Morning Prayer, and then hang around the Holy Innocents compound until time to leave.  We enjoy the garden there for the first time, and marvel at the tropical vegetation.

We are assigned again to The Lord's Place.  By now some of the residents are familiar with us, and they greet us with enthusiasm.  The place has been transformed since the day before and erupted into a joyful frenzy.

My little girls with Downs, who have stolen my heart, are bustling about helping less able residents pull on clothing and find shoes.  The fearsome aunties are not to be seen, and the auntie on duty is patient and careful.

There are several Brothers on duty this morning, and I am thrilled to see them hugging and joshing with the residents, who clearly love them.

Still, it's a mess.  The residents do not own any clothing, and must take pot luck.  It's clear that some are vying for a particular dress or blouse to wear this week.

A wiry little resident named Bethany, black as ebony and clearly possessed of impressive organizational skills, bustles about issuing orders, which likely as not are ignored.  

A cabinet is opened.  There are stacks of new skirts that look like they came from the wardrobe of the Ballet Folclorico de Mexico.  They are sateen, flared, with three tiers of wide, colorful stripes.  In another cabinet are new pink golf shirts obviously donated following a charity golf tournament in the States, as they bear the logo of a church.  The combination is bizarre, to say the least, but becomes the favored fashion of the morning.

The little Downs girls dress identically and braid each other's hair.  (They are two of the few residents allowed to keep their hair.)  

The auntie on duty works with Amanda, from our group, and more seasoned volunteer from another.  Bras are issued for the day; the residents are thrilled and happily pull up their shirts to show me.

Some women are rubbed down with lotion before dressing, while others are powdered.  Then the hunt for shoes that fit, or that at least can be tolerated for the duration of Mass, are found and issued.

A final spritz of perfume and we are off to the races.  Bethany takes me in hand and shows me the way to the chapel.

We arrive early and are told to sit up close to the front.  Decker is seated  on the first row, with Samuel in his arms.  Samuel is the size of a two-year old, but has Downs and I estimate his age at about four.  He clings expertly to Decker and surveys everything and everybody with acute attention.

The pews are jam-packed into the Chapel, and every pew is full.  There is scarcely enough room to stand up, the pew in front of us is so close to us, but we manage.

An elderly Jamaican man is just finishing leading the Rosary, a hymn is announced, and the joyful procession begins.  There are 40 Brothers in the choir and 20 more make up the instrumental ensemble, with guitars, drums, bass, keyboard, and a riot of rhythm instruments.

At last Mass is ready to begin.  The Brothers announce the song and the chapel erupts with joyful song.  Everybody begins to sway and clap and sing.  The bamboo cross passes by and little Samuel, in Decker's arms, waves his little arms in perfect time to the beat.

And so it goes for two solid hours.  I am moved, I am relieved, I am restored.

I am reminded of my favorite scripture:  "God will restore the years the locusts ate."    Like a kaleidoscope that takes a quarter turn, the whole picture of my experience in Jamaica has shifted.  

Where there was despair, there was now hope, and Jerry and I agreethat we will find ways to help the Brothers in their work.

Thanks be to God.

Wondering, Part II

Kingston, Jamaica, Saturday, September 29, 2012

I awake at 4:30, eager to beat the crowd to the showers.  Alas, someone is already in our upstairs shower so I creep down the stairs to the one located off the carport.  I can see that it is free, but the gate has not yet been unlocked.

Sister Joanna appears and says that today we are allowed to sleep until 6:30 but I can shower if I want.  I know I'm done with sleep for the day so I opt for the shower. I'd forgotten shampoo so I used the small bar soap in my kit from the Omni and discovered it worked fine.

Back upstairs I get dressed.  Most of our team members are already awake.  Turns out nobody got the news about the later wake-up.  I go to the chapel to sit and read up on Morning Prayer.  I'm used to my abbreviated version in Magnificat, but baffled by the tomes of the Divine Office we are given for the standard version.

A bigger contingent of musicians shows up today for Morning Prayer and Mass.  We chant the psalms and sing praise and worship music.  The brother nearest me has a remarkably beautiful baritone voice.  I get distracted watching him sing and note that he appears to be professionally trained.  I ask him after Mass and he looks astonished and says, "No!" and hurries away.  (We are not supposed to induldge in chitchat with the Brothers.)

We are loaded into the van and taken back to The Lord's Place and Bethlehem.  Today Jerry and I are to work in Bethlehem.  We very much want to work together today, as do Trish and Alan.  We have lots of experience in babycare teamwork! Plus, Jerry and I are the oldest in the group, and figure caring for babies will be easier on our aging frames, as the young people who worked in the older boys' ward yesterday told us that caring for them was physically very demanding .

We are assigned to the older boys' ward.  The boys appear to be, by their faces, in their mid-teens to early twenties.  They are all greatly afflicted with cerebral palsy, their limbs contorted into an incredible variety of configurations I have only seen in photographs.  Jerry is given the task of wiping down all the frames of the metal cots and the plastic-covered mattresses with insecticide/repellant, as ants are a constant plague.  It is an enormous, cavernous room--high concrete walls with window close to the ceiling, concrete walls and floor.  Not a picture, not a cruxifix, nothing that is not strictly utilitarian is present.  There are light bulbs hanging from the ceiling, but they are not lit so it is dim, especially as the day is cloudy and little light makes it through the windows.

I am provided a shred of a broom whose best days are in the last century, and gamely tackle the floor.  Alan mops with disinfectant behind me and Trish is assigned to help with bathing.

The boys and men lie on their cots.  Some are responsive, some are not.  We smile and say good morning to each as we go about our business.  Their eyes track us.

One young Brother is dispensing meds.  Trish and another are taking patients to the showers across the hall.  The Brother helping with bathing sings softly in a clear tenor voice.  It is soothing beyond imagining and of all souls, I suspect mine needed it the most.

My "fix-it" mentality is running in high gear this morning.  I suspect at least some of these boys and men are (or began) intellectually intact.  I wonder about their lives, locked inside the prisons of their bodies, in turn locked within the prison of this place.

Could not Mozart be playing?  Could there not be pictures on the walls to contemplate?  Even the ghastly, ubiquitous televisions that are everywhere in the United States would offer a little food for thought.  What is the reasoning behind this sensory deprivation all around me?  If you transported me unawares to an unoccupied ward and asked me, "Where are you?" I would venture in a gulag or concentration camp by all appearances.

I am assigned to feed one of the older men his bottles of thick formula.  This I can do!  Brother tenderly positions the man with his head elevated on a foam wedge and tells me, "He eats very slowly.  You must be very patient."

I speak to the man as if he can understand everything I say, although he seems only semi-concious.  His head is normal sized, and he is handsome.  His body is diminutive, the size and heft of an eight-year-old, and grotesquely twisted into an improbable state.

Sucking is hard work for him, even though the hole in the nipple is the size of a penny nail head.  I help by gently squeezing the bottle to help the flow keep going.  Every now and then he shows signs of distress, and I lift him and turn him to the side and gently pat his back as he coughs and clears his throat.  We proceed like this for some 40 minutes.

An auntie approaches and says brusquely, "You are too slow.  Let me!" and snatches the bottle from my hand.  I try to protest but am dispatched.  I watch as she squeezes the bottle hard, shooting formula into the man's mouth.  He begins to cough as the expected trickle down his throat becomes a jet stream.  Sadly, I go away. 

I tell this story to Trish later on and she said, "Yes, and when she left his bed he threw it up."

It is time for Noon Prayer and lunch.  We have fried hard-boiled eggs in a tasty curry sauce over rice, novel but satisfying.  We speculate that the chicken must be the most revered food source in all Jamaica, if not the sole one.

Among ourselves, we share our dismay at the treatment of the residents by the aunties.  We wonder why, in a country as poor as Jamaica, with such a high unemployment rate, it is not possible to hire people who can treat them decently.  We wonder if maybe we are misinterpreting, with our bleeding-heart Austin sensibilities, typical interactions between Jamaicans. 

We are baffled.

This afternoon we work only an hour more and then are taken to the National Stadium, an indoor arena where the Missionaries of the Poor are presenting Fr. Ho Lung's production of The Messiah, definitely not to be confused with Handel's, but representing a distinctly Jamaican take on the story of salvation from the creation of the world through the Ascension of Our Lord, all in song and dance.

The production is impressive and very entertaining.  All singers and dancers, many of them professionals, donate their time and talent to the ongoing presentation of this work.  It is the main fund-raiser for MOP, which relies less upon ticket sales and more on the collection taken up during intermission. 

Last night it rained hard, and some areas were still experiencing minor flooding, so the crowd, though respectable, is a little sparser than it would normally be.  We sit in the rafter area with the Brothers and other volunteers.  I buy an orange soda, which I don't really like, but I was thirsty.  It just tastes strange, though some of our group like it, so I set it aside.

Afterwards, waiting in our little bus with the windows open, a young boy comes to talk.  He is friendly and curious, and doesn't ask for anything (we are usually approached for help with visas first, and money failing that).

"America is the best country," he says, "with scientists that think of all these new things and everybody has it good there.  You can do anything in America."

I fervently agree.

Back at Holy Innocents, we have Afternoon Prayer, and supper.  Someone has seen an ice-cream parlor nearby, so defying all the rules, a contingent of our young men is sent out on a mission.  They return safely with a cache of vanilla, chocolate, coffee, and strawberry ice cream.

It is phenomenal, more like gelato than American ice cream.  The coffee is unbelievably good.  We agree the butterfat content might well be 100%.  We eat ourselves into a stupor and after Night Prayer go to bed, where both Jerry and I sleep like angels in our cots.

Sunday our only responsibility will be to return to The Lord's Place and help the residents dress for Mass.  After that we are free, so we have asked Sister Joanna to help us get a hotel where we will spend the night.  The young people have secured a private bus to take them to a fishing village, but we are tired and feeling old and direly in need of connection (wifi!) with home and the Golf Channel.