The Clock is Ticking



Dr. Jon Pierce-Shimomura has a big bet on a tiny worm

 Sometimes Jerry and I feel a bit like Forrest Gump. You know, winding up at the right place at the right time in our lives against pretty unlikely odds. I’ll tell you why.

Last night Jerry and I attended an astonishing event, put on by the Rise School of Austin and the Down Syndrome Association of Central Texas.

Lots of other parents of kids with Down syndrome were there, too, to hear Professor Jon Pierce-Shimomura, Assistant Professor of Neurobiology at UT/Texas, fill us in on his current research and provide an overview of current research into Down syndrome.

Dr. Jerome Lejuene discovered the extra copy of chromosome #21 that characterizes typical Down syndrome in 1959. Finding the extra chromosome was huge, but even Dr. Lejeune did not hold out much hope for figuring out why and how it wreaks such developmental havoc, saying at the time "it would take less effort to find a cure for [Down syndrome] than to send a man to the moon."

That's because, whereas conditions like cystic fibrosis may be caused by one gene, Down syndrome is caused by an entire chromosome packed with genes. Finding which one(s) cause the intellectual disability and physical characteristics of Down syndrome is not a simple task.

And not one many researchers bother with. As Dr. Pierce-Shimomura says, "If you were a researcher, would you rather investigate one gene, or 350?"

In the good professor's case, the answer to this question is easy. His name is Ocean Pierce-Shimomura, he's a bright busy ten-year-old, and he has Down syndrome.

And the Forrest Gump part? Well, in 1984, when our Kelly was five weeks old, I attended the 13th annual convention of the National Down Syndrome Congress in San Antonio. The speaker there was Jerome Lejuene. I had just gotten Kelly’s karyotype (which Dr. Lejuene developed) and it showed she had not one but two extra copies of the 21st chromosome. I was beside myself with worry.

But Dr. Lejuene calmed me down, saying he was certain she would not be doubly handicapped and would probably develop much as she would have with only one. And she has, having turned into a delightfully poised, well-mannered young woman of 27.

Then on the last day of the 2007 NDSC conference in Kansas City, Jerry and I attended the session of Dr. William Mobley, then of Stanford University, who presented exciting news and real hope for medical intervention in the disabling conditions that affect children and adults with Down syndrome.

Then next year Jerry and I went to Yosemite on vacation, and while riding bikes through the park he said, “I think we should go visit Bill Mobley. Let’s drive down to Palo Alto on Thursday.”

“O good Lord,” I said, “he’s an internationally recognized scientist. We can’t expect to just waltz onto the campus and find him and he’ll see us!”

(I should have known better, having been married to this guy for almost 40 years.)

So Thursday we find a parking place and the general area of campus where the lab was located. Who saunters by on that fine fall morning but Bill Mobley? A conversation ensued, a promise to come to Texas was extracted, information was exchanged, and we parted, my husband a satisfied man.

Several months later, Down Home Ranch, the Rise School, and DSACT presented an evening with William Mobley at the UT Ex-Student Center. We combined our mailing lists and invited everyone we could think of.

In the audience that evening was a brand-new assistant professor of bioscience, Dr. Jon Pierce-Shimomura. Someone introduced him to Dr. Mobley, who chose to present him to the audience as a researcher in the field of Down syndrome research.

Jon, actually having been brought to UT to undertake research on alcohol, didn’t know what to say, so he said nothing. One thing led to another, in part because of relationships created that night, and…who knows, post hypnotic suggestion, perhaps…as of today Jon directs the research of a$3M laboratory under a grant from the National Institutes of Health. His research swapping out genes in a tiny, simple worm (with whom we share a large preponderance of the same genetic material, humbling though that be) feeds into research on more complex creatures, suggesting which genes might prove better bets to test. (The worms go from infancy through middle age into senescence in 7 days.)

Even though funding for Down syndrome across the board is miserably low compared to many other conditions, real progress is being made. Let’s never forget: Ten years after Dr. Lejuene's comment, we did send a man to the moon.

There is real hope for our kids— for the older ones, that they’ll avoid the ravages of Alzheimer’s and retain their hard-won accomplishments as they age.

And for the little ones, well…them we’ll send to college.

Meanwhile, the clock is ticking. Go to the following link: ww.dsrtf.org/ to learn how to support Down syndrome research, and don’t think it won’t make a difference.

It will.

He's here!



Baby Adam in his grandmother Carolyn's arms

 For the past few days we've been on tenterhooks as our granddaughter Caitlin, two weeks overdue with baby Adam, was in labor.

Although Caitie, a third-year med student at KU in Kansas City, is tied into the best midwifery and medical science have to offer, she is simply a little, tiny person.  (Mom is almost 6' tall, Dad is 6'3", and brother is 6'5"--so go figure).

Nana here has been wringing her hands since learning of the pregnancy, unwilling to think of Caitie going through what I and her mom went through.

We were right to be concerned.  Baby Adam was born by C-section after 40+ hours of labor, which did not progress according to plan.

Jerry came home to find me weeping in the front yard into a glass of wine, sitting in my bird-watching chair.  At last news came from daughter #2 Martha that Caitie had been taken in for a C-section.

Then Kelly called an hour later, having received a text message from Carolyn, Caitie's mom, that baby Adam "is here".  Kelly was super proud to be the one that announced the news, having quizzed me hourly for the past three weeks, "Is he here yet?"

Martha asked me, "You ready to be a great-grandma?"

Resoundingly, joyfully, YES!!!!!

How blessed are we to see our children, and our children's children, and our children's children's children, soon to be standing strong and tall around our table like young olive trees.

So, welcome to the world, Adam Lee Linscheid, 8 pounds, 3 ounces with a full head of red hair! 

Nana, Bapu, and Great-Aunt Kelly (at 27 yet!)

Mchael's retirement plans

Michael enjoys the drum circle

This morning when I showed up at the Pavilion for staff meeting, I saw Michael in the hallway.

"So, Michael," I said.  "Are you ready to turn 40?"  (This will happen on the 10th of November.)

"Yeah," he replied,  "Sorta," looking a little downcast.

Then he brightened and said, "When I'm 100 years old I'm gonna sit in a chair on the lawn and watch all you guys working."

I didn't mention that--speaking strictly for my part in this scenario--that is unlikely to happen.

Michael turning 40 is a big deal indeed, because Michael (after Kelly, who came with the deal) is the Ranch's #1 Rancher, having moved in November 1 of 2001.

And before that, Michael was one of the very first campers to arrive in 1995.  We have videos of Michael dressed in a prom gown (the last costume available during drama class), with Dixie cups inserted in strategic anatomical places which guys don't usually fill out.

In fact, when it came time to introduce himself, he decided "Dixie Cups" was the name of his character.

Michael is a born comedian.  He can speak faux Chinese and sing opera in Italian.  He is greatly gifted musically.  I recall driving home after chorus in Austin late one evening.   Kelly and Daniel had dozed off and I had "Blue Monday" on KUT playing on the radio.  During a station break Michael pipes up in the back seat, "I got those greenhouse blues, oh ye-es I do.  I got those greenhouse blues, oh ye-es I do.  If I don' get outta that greenhouse, don't know what I will do." 

In perfect blues cadence and style.

What a guy.

Don't punish the disability

Yesterday as Jerry and I drove into Austin I read the scriptures for today's Mass readings.  The gospel was Jesus' parable about the King who invited people to his son's wedding feast, but everybody was too busy, saying "Nah, I gotta work this weekend" or "Sorry, I already have plans."

Well, words to that effect.  Plus a few murdered the men he'd sent with the invitation!

The King was insulted, so after wreaking a bit of havoc upon those who had refused his invitation the first time, he once again sent his minions out to bring guests to his son's wedding feast, but this time they weren't to bother with the list of the in crowd, but to bring in any old whobody they found on the street who wanted to come.

The last part of the parable was in brackets, which means it doesn't have to be read if the preacher doesn't want to deal with it, and this was the part about the guest who showed up and the King asked him why he'd not put on his wedding attire.  The guest had no good answer, so the King told his people to bind him hand and foot and cast him out into the darkness where there would be gnashing of teeth and other unpleasantness awaiting him.

"Wow," said Jerry.  "I'll be interested to see what Fr. Larry has to say about this last part."

But Fr. Larry does not quail before the words between the brackets.  And what he said, assuming I heard aright, was that the wedding guest's attire or lack thereof referred to his spiritual state, not his sartorial one.  He came not to celebrate the wedding of his soul with that of the King's Son, but for some other reason.  So as things wound up, he fared no better than those who chose not to come at all.

Later Jer and I talked about it some more, debating just what state one's soul had to be in before it was worthy to come to the feast.

In our profession there's a time-honored rule: Don't punish the disability.

By this, we mean, don't punish people for what they have no control over.  People with obsessive-compulsive disorder will never be punished, bribed, or nagged out of their condition.  It's their disability.  They can still manage to drive you crazy, even if you know that, which fact might constitute your disability.

The longer I'm in the business, I realize we all have disabilities, of all kinds, many we don't even know about.  We struggle against them, and like Paul, despair of our inability to overcome them.  Throughout our lives, we kid ourselves if we ever think we've made it.  Life is nothing if not a thorough education in humility.

And given that, the proper wedding attire must be the mantle of humility before the King, as we seek new life in Him who, having made us, understands us as no one on earth, ourselves included, ever could.

Oh what a relief...

Kyle and the mountain of lettuce

So, for the past five weeks or so I've been grappling with the kitchen.  The Pavilion kitchen.  The kitchen through which runs all the food consumed by the Ranch every day.  Which is a lot.

Last week we hired Miss Gigi to run it.  Gigi actually knows what she's doing, having extensive experience in running commercial kitchens and having owned and run a restaurant with her husband.  Talk about finding a treasure in your own backyard, Gigi and Jo live a mile up the road from Down Home Ranch on "the Spur."

"I always knew I'd wind up here somehow," Gigi said. "Every day when I'd drive by going into Elgin I'd see that gate and think...someday I'm going to be there."


Valerie & Mike bag food into household portions

This matters to Gigi because of a very special little girl, granddaughter Presley, who inspired her parents to create a foundation called The Upside of Down to better the lives of people with Down syndrome.  Upside has paid for many a camper to attend Ranch Camp over the few years it's been in existence.

Man, those cute little tykes wake up a lot of love!

So enjoy these pictures of our Ranchers happily hard at work as Miss Gigi gets the kitchen whipped into shape.  Presley's mom and dad might not have envisioned their little one inspiring scenes like this, but then the world is just plumb full of surprises, isn't it?

Kara setting up drinks for lunch

We need your help



The Bastrop County fires as seen from Hwy 71
(Photo by HippieChickenFarmer)



Back in the early 90s we didn’t think much about fire here at the Ranch, until the day I headed up the trail to have lunch at the little farmhouse we had bought and moved adjacent to the Ranch.

Jerry was still working in Austin, so I spent most days alone working in the small trailer that had served as our home until just a few months before.

As I walked around the bend of Sandy Road I saw a large plume of smoke rising up from behind our house. As I got closer I saw the flames racing across the grassy areas under the tall trees in the pecan bottoms. It was still a ways off, but much too close for comfort, so I turned and ran as fast as I could back to the office to call the volunteer fire department and Jerry.

By the time Jerry came streaking in 40 minutes later, fire had engulfed a few acres of our pecan bottoms but fortunately was contained in short order. The early 90s had seen record rain, there was still water in the creek and the shrubs and trees were plump with moisture.

Still, we could see the yaupon holly exploding into fiery balls before being quickly consumed. We knew that luck was with us in those days.

Unlike now.

There are dead and dying trees all over Down Home Ranch. The sentry oaks by the historical cemetery are gone after standing watch for decades. Everything is brown and tinder dry and the only green to be seen is around our well-fed pond.

Fortunately, we’ve been preparing for years of extreme drought, just like this one. In 2007, we began working with the Texas Forest Service on a project we call the Annual Texas Chainsaw Manicure. One day each autumn, volunteers come out to the Ranch to help clear brush and open up wooded areas, decreasing the amount of “fuel” that wildfires need to grow. We’ll be holding the next one on October 15th, and if you want to come out and help, you can call Marci at 888-926-2253 or send an email to her at marci@downhomeranch.org.

Today, thanks to our regular “Manicures” we are an official Firewise community — one of only 42 in Texas. But reducing our risk doesn’t eliminate it.

Just a few weeks ago, on Labor Day, Sharon came rushing over the hill. “You should see the smoke coming up from the south! It’s awful! Come and look!”

We did, and saw huge billowing pillars of smoke rising up like thunderheads on the southern horizon. The day before, as we’d driven into Austin for church, I’d said to Jerry, “With these wind gusts we’re having, and as dry as we are, I hope and pray no wildfires get started.”

He snapped back, “Don’t even say that!”

But they had, and we stood silently, watching the beginnings of what has become our state’s worst fire disaster ever, with more than 1,500 homes lost and more than 34,000 acres burned. Everyone on the staff has friends and relatives who lost their homes.

So we’re more than nervous, we’re worried sick. It could happen here in a heartbeat.

That’s why we’re dead earnest about this year’s Chainsaw Manicure. To be a success, we need to attract as many volunteers as possible to help us prevent this tragedy from taking the 340 acres that we call “home.”Please help protect our Ranchers from the heartbreaking losses suffered by so many of our neighbors.

Your hours spent at Down Home Ranch will never count for more.

Photo by Texas Forest Service, printed in Pegasus News
http://www.pegasusnews.com/news/2011/sep/08/plano-firefighters-help-combat-bastrop-wildfires/

God's in his heaven

St. Francis watches over the Benedict House garden

Yesterday Jerry sent me to Bloomer's to buy some winter vegetable starts for the garden.

I loaded my little red wagon and was enjoying walking around the premises looking at all the beautiful plants and fountains and such.

Bloomer's started up just about the same time the Ranch did, with a little house on 290 and some makeshift shelving and shade clothes for a small assortment of plants.  We've known Marcus for a while now, and shared the ups and downs of getting a big dream up and running.

Through the years the Ranch grew, and Bloomer's grew, moving out onto 95 and now covering a few acres or so.  That little front-yard business has grown into an inspiringly beautiful place--you know, the kind you don't want to leave when you get there. 
We buy from them, they buy from us--it's a long relationship by now. 

Anyway, I got my $15 worth of plants and then spied St. Francis standing over by a cactus, and liked him so much I bought him, too.  Total bill now: about $100.

Oh well, that'll teach Jer to send me to Bloomer's.

But St. Francis looks good standing there over our little oasis.  And this morning I got s surprise when I looked out the window and saw over 100 doves flitting about the feeders and bird bath, which I need to fill several times a day now because it's one of the few safe places for many birds to get a drink these days.



Breakfast at the Oasis at Down Home Ranch

The doves were super spooky and didn't come back after I refreshed the water and put out more seed, but Mr. and Ms. Jay and the cardinals were there in short order.

Looks like St. Francis is doing his job.