Just friends

Michael two Gamm boys at Cabela's

The Gamm family has long been good friends and neighbors of Down Home Ranch.  Both Jeff and Kristie volunteer a lot, and even work occasionally as weekend house managers, and as the kids grow older each so far has found a niche volunteering or working for Ranch Camp.


But best of all, the Gamms love our Ranchers, and take the time to get to know them, and then invite them over for the weekend every now and then.


What's the big deal on that?  Mainly that people with disabilities don't get to interact much with anybody who isn't related or paid to do it.  It's a special treat indeed when folks just have you over because they like you and want to hang out with you for a while.


Saturday Michael was invited over to the Gamms to spend the day target shooting, followed by a trip to Cabela's.  All week leading up to the weekend he talked about things they planned to do, and today he hit the barn jabbering away and showing off a small (but visible!) bump on his forehead from a recoil.  I had to shoo him off to get to work!

Michael's a happy camper with buddy Jeff

Here are Jeff's comments on the day:

The day started off with Biscuits and sausage Gravy.  Then headed to the back where Michael proceeded to consistently hit the Metal Ram with the AR15 pistol.  He really liked that gun as I can convert it to a 22 long rifle and makes it fun to shoot.  Then it was off to the next best place this side of heaven, Cabela's where he and the boys took out more targets in the shooting gallery and enjoyed the usual Cabela's fun of aquarium, taxidermy and lots of guns n stuff.  It was a blast to be with my friend while the air was filled with the smell of powder and the sound of bullets hitting the steel ram target.

Aiming the AR15

Really, truly, we are blessed.

Valentine Day

Kelly and Sterling on Valentine's Day

About a month ago Jerry told me he'd ordered tickets to the Valentine's Day Willie Nelson concert at the new Austin City Limits in the new W Hotel in downtown Austin.

Jerry knows I'm not a great fan of such, but even I agreed we'd best go see Willie while we still can, before he or one of us shuffles off the mortal coil.  So far so good.

But then the week before Valentine's Day, Kelly asked me about having a "Valentine's Double Date."  She was crushed when I told her we had plans.  You see, about seven years ago or so we took her and the boyfriend Sterling out on Valentine's Day, and as every parent of a kid with Down syndrome should understand by now, having done something once and liked it means you are now committed to a tradition that stretches to infinity and beyond.

So I asked Jer how about taking them out Sunday evening for dinner.  I called Martha House to see a) if they were available and b) if they wanted to go.

Is the Pope Catholic!?  Of course they wanted to go, and Sunday was even way better, it turned out, because the real Valentine's Day fell on Monday this year, and everybody knows Monday is Walmart Day, and you don't mess with Walmart Day.

When we went to pick Sterling up at the Spur, his parents were just finishing installing his new TV.  We chatted a while and then headed to Elgin to a Mexican restaurant.  Kelly and Sterling were their ususal irrepressible selves, goofing off and turning serious by turns.

Halfway to Elgin Kelly said, "We're almost done with the question book, Mom."  She was referring to 101 Questions to Ask Yourself Before Becoming Engaged, which she and Sterling have been working through with Casey the case manager and, on occasion, Casey's patient prince of a husband, Matt.

Kelly is in a fever to get married.  Sterling is rarin' to go some days but on others says, "I'm not ready yet."  Time will tell. 

After we'd dropped them off, Jerry and I reminisced about that first Valentine's Day double date.

Sterling at the time was still living at home with his mom and brothers in a rural area outside Elgin.  He and Kelly were in what I called the "Bambi-Filene" stage.  They'd been friends since childhood, and had always had a great time playing together.  Then adolescence came along and they weren't sure what to do with each other.  They got awkward and Kelly had no idea how to relate to Sterling anymore.  Sometimes she would not even look at him.

But later, when Sterling came to work in the day program of the Ranch following his graduation, their relationship cemented as they were able to spend time together on a daily basis. 

They broke up once, which caused a seismic wave to roll through all the counselors from camp who knew them, one of whom emailed in anguish, "I can't live in a universe where Kelly and Sterling aren't together!"

It didn't last long.

Last night they were discussing being together on the work team with Miss Naomi.  "We are professionals," said Kelly.  "No kissing until after five o'clock."

"That's right," chimed in Sterling.  "We kiss after five o'clock."

Sterling was happy to get back to his new TV and had plans for writing about our evening together.  Kelly was happy to get back to Martha House.  As we dropped her off, she turned to me and said, "Thanks for doing this, Mom."

"My pleasure, daughter," I said.  "I love you."

And I do.

Bowling Alone...NOT!

Julia rags Jerry before bowling

Last Friday the Ranchers went to Bastrop for their regular bowling practice at the Chestnut Square Family Entertainment Center.  Special Olympics competitions are coming up and we do love Special Olympics bowling events!

They were in their usual high spirits, glad to be at the end of a workweek, excited about plans for the weekend.  There were several lanes going, lots of joshing trash talk, and body language verging on the eloquent.

We are not inconscpicous in such a situation.  In fact, we epitomize what many politically correct folks who work with people with intellectual disabilities really, really dislike, to wit:

1.  We go bowling as a group--all 22 of us plus staff.  (Nobody's required to, by the way; they could stay home if they wanted to.)

2.  We are pretty identifiable as a group containing people with intellectual disabilities
(since most of us have Down syndrome, we haven't figured out a way around this.)

Way back when, Jerry had a colleague who got very heated up whenever she beheld such egregiously unacceptable scenes as people with IDs bowling with their peers. 

"It's my goal in life to rid the world of 'retarded bowling!'" she would say.

Her ideal world was one in which a person with an ID, living alone in an apartment, would be invited by his University of Texas student neighbor to go bowling one fine evening.

Hey, it's a heck of a vision!  I wish it would happen.

And it does, once in a blue moon.  Not to anybody I ever knew, but I've heard about it, though when it does, it's generally part of a bigger plan to get the regular students involved with the "special needs" ones. 

In other words: it's a project, paid or volunteer.

Not that there's anything wrong with that.  It means caring people wanted to reach out and make someone's life better, and devoted time and resources to doing so.  Nothing wrong with that.

But...who's your real buddy?  Who can you stay up late with, laughing and giggling and dreaming of the future?  Who struggles with the same issues you do, which might include lots of things regular folks never give a thought to?  Who shares your dreams of greater independence, maybe marriage or travel?

Who can you relax with and just be yourself?  Ah...the usual suspects: family and friends.

God gave you your family, and thank God He did.  Your brother might get you out of bed by leaning against the wall, placing his feet on your back, and jettisoning you across the room, with the full consent of your parents.  If anybody else did that it would constitute abuse. 

But to your brother you're just a pesky sister your parents told you to wake up, not a person in official need of protection.  Thank God.

Friends, that's a stickier issue.

You're part of a select group, only about 2% of the population.  Finding and keeping friends is a challenge.  The regular kids, however kind (which sometimes they are not) won't be your friends.  The special ed classes will have an assortment of people with wildly different levels of functioning.  If you're really lucky you might find one or two compatible kids during school to do things with.

But when you get out of school, you generally don't even have that. 

That's the reality.

Down Home Ranch was once scorned by a member of the politically correct crowd as a "fake community."  We don't know what the person who called us that had in mind for a real community, but I do know this.

We have one heck of a good time bowling!

Knockin' 'Em Down

What a week!  Sunday: board meeting from 1:00-6:00 PM. Monday:getting in the hay and the blessing of the animals on  St. Francis' Day.

Then Tuesday was the great semi-annual Staff-Rancher bowling tournament.  What a hoot!  The trash talk had gotten pretty bad over the previous week, and we were each determined to do our best for our team.

So we caravaned over to Chestnut Square Family Entertainment Center in Bastrop and pretty much took over the bowling alley.

Some of our staff seem to have been pretty good bowlers in their day.  Alas, those days are over.

The Ranchers, on the other hand, began bowling in grade school and haven't stopped since.  Which is to say, they whupped us and they whupped us good.

After bowling, we went off to the park for pizza and play in the cool autumn evening.  Sterling, with high schore of the day of 145, was elected to receive the trophy on behalf of the Ranchers. 

Check out pictures from our day below.



Julia rejects Jerry's offer of a crying towel



John models the martial arts release



 

Sterling and away we go!

Andrew in a pensive moment

Brian ready to roll



Kara is serious



Charles explains his technique

Park on the Colorado River

Alaina & Kyle at the park

Kristen, Crystal & Naomi swing

Sterling accepts trophy on behalf of Ranchers

Sterling & John celebrate their win





I Don't Postpone

Margret

A few weeks ago I was sitting in my office in the barn and the phone rang.

“Hello, Judy. This is Margret Hofmann. I’m 85 now and I don’t postpone things. So. When am I going to see you?"

We settled on a date. I told Margret I’d pick her up and bring her out to the Ranch, which she’d last seen in 2001. Unbelievably, that was also the last time I’d seen Margret.

Margret and I met in 1980, when I began attending the Friends Meeting of Austin (Quakers). She was clerk of the meeting.

Quakers must either reach consensus or have objections withdrawn in order to make decisions, not the easiest sort of business meeting to run, but Margret was good at it.

At first I was frankly intimidated by Margret’s efficient, non-nonsense manner. John Belushi’s Samurai skits were a staple on Saturday Night Live in those days, and some of the younger Friends took to referring to Margret as “Samurai Quaker Clerk.”

With great affection, you understand.

Margret came of age in Germany during WW II in a time, and in a place, where there was little reason for belief in the goodness of mankind. Her Jewish mother was interned and murdered in a concentration camp.

Margret lived through the Allied fire-bombing of Dresden. She decided early on that violence was never the answer to anything, and dedicated her life to working for the good of mankind.

In the scary days after our daughter Kelly was born with Down syndrome, Margret made the trek several times a week from south Austin to our home in northeast Austin, bringing casseroles and interesting things to read. She was the friend you turn to, the friend who was there.

Sterling, Judy, Kelly & Margret

How could I have let nine years pass without seeing her?

I picked Margret up one Thursday morning and we headed for the Ranch. We quickly got up to speed on family news, and into lamentations concerning the headlong decline of the English language. I waxed eloquent on the joys of diagramming sentences, but since Margret’s mother tongue is German she never had the pleasure.

“Better than Sudoku,” I said.

We had lunch with Margret’s daughter Heidi and toured Three Oaks Mine, where Heidi is human resources director. Jerry had been trying to connect with us all day so he could see Margret, so we came back out to the Ranch.

Margret and Jerry happily discussed the various large post oaks. Margret is famous for her work saving large trees from the developers in the 70s and 80s, and was recently honored by the City of Austin by the creation of the Margret Hofmann Oaks park, a tiny triangular cluster of old oak trees located on a quarter acre opposite the Council Chambers, where she once served.

Margret has struggled with heart problems for the past quarter-century and is frail in body, but indomitable as ever in spirit. She claims her cardiologist keeps her alive “for the stories,” and she has them in abundance so we confidently look forward to having her around for years.

It’s been a high honor of my life to know her.

Praise on the Porch

Thursday evening we heard music coming from across the Village in the direction of Barnabas House, so we drove down to see what was going on.

 

Rebekah was in the front yard with her prayer flags, and Charles and a gaggle of Ranchers with guitars were holding forth on the front porch.  Diana was leading people in song, and Alan was playing drums.

It was great to see Andrew playing his guitar.  He's really quite good, but hasn't played much the past few years.







It was a great scene--a lazy evening with the cicadas thrumming and a joyful noise rising up through the heavy summer air.

Charles blew his shofar, which we were afraid might attract some unwanted wildlife...



He and Diana promised to make it a regular Thursday night gig.

"Sis Was Slow"

Wednesday was our last day to play in Florida.

I stayed home to blog, and Kelly joined the sisters on their last beach run.  We'd planned to go see Toy Story 3 in the afternoon, but everyone was so tired that after a late lunch Carolyn suggested we instead watch Mamma Mia, the sing-a-long version.

Inspired idea!  Kelly eagerly set it up and we all settled in.

We're all singers and knew some or most of the songs.  It was great fun and got me to thinking...Greece is looking very enticing.

Back to reality. 

We'd made reservations for the birthday dinner at  PJ's Seagrille in Boca Grande.  Dinner was fabulous.  We took a break to present the brithday woman with her gift commemorating this milestone birthday--a lovely James Avery hammered ring made up of five loops of silver--representing the five of us gathered to celebrate:  Carolyn's three sisters, her mom, and her daughter.

Alex, Martha's son, had written a card assuring Carolyn she didn't look a day over 42.  We all got real mushy.

A round of coffee and desserts, a short walk on the beach in the moonlight, and home to bed.

Then next morning it was time to face the music.  We said bye to Caitie and Carolyn (and the red Volvo convertible!), who had an early flight (minus the Volvo, alas).  We hit the road at 9:00, got to the airport, turned in the rental car, backtracked home through Atlanta, found my car in the parking lot at San Antonio, dropped off Janny and Martha, and Kelly and I headed back for the Ranch.

I popped in a CD of Selena and was going over the high points of the vacation in my mind.  I'd been so impressed with Kelly.  After getting settled in at the vacation house, she'd pretty much dropped all her insistence on what some folks call "the grooves."  Dinner at 9:00?  No problem.  Lunch at 11:00 or 1:00?  Same.

However, about a third of the way home from the airport she started talking about Yolanda Saldivar, the woman who murdered  Selena .   My heart sank.  We have these conversations frequently.  Kelly knows Saldivar is in prison and will be there for many more years.

We review the facts: Saldivar can't get out, she's no threat to anybody, Selena's parents will miss their daughter forever but they have other children and grandchildren,  Selena's sister and brother are still musicians, etc.

Through Manor and Elgin, Kelly continued to talk about Saldivar, despite my attempts to change the subject.  Finally I asked, "Kelly, do you think Selena would want us to spend all our time thinking and worrying about that awful woman, or do you think she would want us to enjoy the beautiful music she left behind?"

"The music," she replied.

"Yes!" I said.  "Let's listen to Selena and sing along."

A few miles down the road another Selena question began to surface and I cut it off with the sign for "Stop it!"  I was exhausted and could not keep this up.

It took me a few hours, but just before bedtime I realized that Kelly's "grooves" had started to reassert themselves, doubtless in reaction to her growing anxiety about returning home.  I realized that I, too, had been bracing against the return to work, colleagues, friends, expectations, and all the frustrations thereof.

I had emailed Jerry after the first day on vacation that after several hours on the beach, a nap by the pool, and a nice dinner at home with wine, I  felt like warm liquid oozing from room to room.  For a perpetually up-tight person like me, that's as good as it gets. (I tried an "at-home" vacation a few months ago but it was a total bust.  You literally have to "vacate" the premises to get the real thing.)

Home is good, too, but Kelly and I also work here.  Our neighbors are our colleagues, our friends-- and in some cases-- our bosses.  The Ranch may look like paradise to outsiders, but we're a true community, with all that implies.  We're real life, warts and all.

On vacation I'd seen a different, more "normal" side to my daughter than I've ever been privileged to experience before.  The change was so marked it made me wonder: What things happen here at the Ranch that interfere with its expression in our everyday life? 

On the trip I'd taken a copy of a chapter from the book Mental Retardation in the 21st Century, Michael L. Wehmeyer and James R. Patton, eds., Pro-Ed, Austin, TX 78757 (2000).  The chapter is "Social Constructions of Mental Retardation: Impersonal Histories and the Hope for Personal Futures" by J. David Smith. 

Everybody's idea of a beach read!  Actually, I saved it for the flight back.

Smith speaks eloquently about how people with IDDs, while recognized as different, used to have their place in society.  This is true.  One of Jerry's 11 aunts and uncles on his mom's side was Catherine, called "Sis" by the family.

"Sis was slow," Jerry's mom would say.  "Couldn't make it past third grade.  But we always knew she was slow."

But Sis had milked, and picked cotton, and cooked, and married, and raised children and eventually earned the rank of sainthood in the family as she proved herself an able and willing caregiver for members at the end of their lives.

Alas, not much need for milkers and cotton pickers these days.  That was a simpler time and place.  As far as the other things Sis accomplished, would she even be allowed to try today?  Or would she have a label slapped on her by age 3 and an army of social workers, case managers, program directors, and special ed teachers directing her life from that moment on?

Who depends on whom?  I wonder.

We've built a beautiful place here at the Ranch.  Our residents and campers give every evidence of loving it.  Our first criterion for residency has always been: "The prospective resident must actively desire to live at the Ranch and able to demonstrate that desire."  We consistently get rave reviews on our facilities and our programs.  We even get total strangers calling up to compliment us on our Ranchers--their appearance, their manners, their joie de vivre.

The Ranch is supposed to be that simpler time and place.  But is it?  What do the Ranchers really feel?  Deep down, do they know how tight is the grip we maintain on the steering wheel of their lives? 

I suspect they do.

Smith closes his article with this observation:

"...the time is overdue for a fundamental questioning of the concepts, terms, and practices associated with mental retardation.  The millions of people with the myriad of developmental disabilities that have been subsumed under this term deserve this questioning of the manner in which they are being regarded and treated.  A disassembling of the aggregation that mental retardation is may enhance our vision of what it should be."

In simple English, I think he's telling me: "Take away all the labels, the specialists, the therapies, the compliance, the documentation, the endless palavering, YOUR hopes, YOUR dreams, YOUR expectations, YOUR investment in Down Home Ranch.  Put away your notions as a professional, as a parent.  And look at your daughter.  Look at this human being as the person God made her to be, and listen to her very, very, very carefully."

When I started this blog, I had to swallow a big lump in my throat before I could expose my daughter's life in the way I do, but  I decided that more good could come of it than harm. 

I owe it to her in return to pry open my own eyes and perhaps see truths I'd rather not see.

"Go now!"

Session 1 of Camp is over and I went to closing Saturday morning.

I didn’t know as many of the camper families in this session—which was for teens and young adults—as I usually do. Most of the campers Miss Gay and I worked with the first 12 years of camp are now attending the adult camps.

But it’s fun to meet the parents and hear the stories of what they did the previous week. It's not unusual to hear that  Ranch Camp marks the first time ever their child has stayed overnight away from the family.

I remember when I took daughter Kelly to Camp Allen for the first time prior to her attending with all her buddies from our little church in Taylor. I wanted her to see where she would stay, show her where she’d eat, swim, do crafts—anything to help ensure a success for her first big adventure. She was eight that summer, but physically and functionally more on the level of a five-year-old, so there was reason for concern!

As we approached the commons area of the camp area her group would use Kelly scampered ahead of me and was halfway up the stairs before I could call out to her, “Hold on a minute, baby girl!”

At which she stopped in her tracks, whipped around, glared at me, hand on hip, and said firmly, “Not a baby! Just a girl!”

Properly chastised, I allowed her to explore her new surroundings without interference from me.

A week later, Jerry loaded the car with all the requisite items for a week away from Mom and Dad and headed back to Camp Allen. Kelly’s cabin was nestled high in the tall pines, up a flight of open wood stairs, which she took two at a time to the top and quickly laid claim to her bunk.

As I helped Kelly make up her bed and stow away her gear, Jerry cased the area for a place to hide out and spy throughout the coming week (his new plan, or so he claimed.) By this time I was comfortable that our girl would do fine at camp, but he had yet to be convinced.

Kelly, however, sat on her bunk with her little legs dangling down and brushed her hand toward us. “Go now,” she said firmly, pointing toward the door.

We imposed kisses on her freckled little cheeks, and instructions upon the counselors, and dragged things out as long as we could before heading for the car.

I had looked forward to my week off from mom duties, but instead found myself disoriented and missing my little sprite something awful. Jerry felt the same. We morosely ate supper and wondered aloud how things were going.

The following Saturday we were up at dawn and at Camp Allen before the campers had even finished breakfast. Kelly was mildly interested in us, but much more so in her friends and counselors. She sang the camp songs with gusto and fervently hugged “Mother Lacy,” the Episcopal priest who served as chaplain for that session, before consenting to get in the car and come home.

Once home she fell quickly back into her routine, but we saw big changes in our girl. She had lived life for a whole week without Mom and Dad overseeing every aspect of it. She’d made friends and scared the lifeguards by jumping right into the deepest part of the pool before they’d had a chance to assess her swim skills.

She’d let her counselor comb out her long hair without protest, done her crafts as best she could, and handled her grooming about as well as the other girls in her cabin seemed to have done.

It was her first glimpse of the possibilities of life outside the home, and she loved it.

At Ranch Camp closing on Saturday, I overheard campers telling their parents, "I want to come back again next week, Mom.  I don't want to go home!"

Charlie informed me that he planned to graduate next June, and then would be here to live full time.  I took Charlie and his mom and dad on a short tour of the Village.  Alan showed them around the interior of Barnabas House. 

This is the sad part of Ranch Camp.  So many want to live at the Ranch, but so few ever will.

But it's something to think about.

Rancher Camp

Tuesday and today the Ranchers have been training the incoming counseling staff for Ranch Camp.  They do this by being "Campers" for two days, and they take their job very seriously. 

We do, too, even paying them their regular wage to do it.

Everything happens that will happen at regular camp in order to give the camp staff the experience.  Of course, our guys are such old hands at this (almost all began their relationship with Down Home Ranch as campers) it's really easier than getting a brand new--and much larger--group of unknowns each Sunday afternoon, but a rehearsal's a rehearsal, and every bit of experience helps.

First there's check-in--lice check (eeew!), medications turned in, ID bracelet put on.

Then there's all that gear to stow away somewhere, bunks to be picked out and made up, too.

Best of all is the chance to make some new friends.

After everyone's settled in and getting to know one another, it's time to go swimming, do crafts, have dinner and and watch the skits the counselors have been working on all week.

It's fun, but that's not to say some folks don't miss their regular bed and in-room TVs!

Up in the morning, it's time to go fishing.  The stories are good, as usual, and they weren't all about the ones that got away, either!

Later in the morning, there was the nature walk.  Most campers agreed it was a lot like working in Gardens--hot, sticky, and buggy.

In fact, when ask what kinds of wonders were seen on the nature walk, most everybody answered, "Ants."

Sure enough, Michael (below) brought back ants and their project for the day, a deceased caterpillar.

We talk a lot about hydration in the Texas summer heat, and many Ranchers now have "camel packs" strapped to their back. 

Here Sterling gives Kelly a sip of water from his.

Chris takes the stage during the pre-lunch break, giving his famous rendition from the Lion King.

While the Ranchers have been masquerading as campers, direct-care staff has been attending two-days of intensive training.

Tonight after supper, everyone will go home, have a shower in their own bathroom, and settle into their comfy rooms for the night.

Tomorrow, they're off to Morgan's Wonderland for the day, accompanied by students from the Texas State University Department of Recreational Therapy.

Friday, it's back to normal, picking the last of the berries, cleaning up after the horses, and cleaning the buildings to get ready for the real Ranch Camp. 

Of Praise and Promise

Friday I attended a reception given by the Chaparral Women’s Club of Round Rock to award grants to a number of local non-profits.

It was fun meeting the other grantees, and I had one of those moments so satisfying and wonderful they go beyond any emotion you can pin a name on.

At my table, a woman spied my name tag and said, “Oh, you’re from Down Home Ranch! I have to tell you that at the regional Special Olympics games, some friends and I began noticing this one team. There was just something so special about them in the way they treated and supported one another. It was very touching, and I had to find out who they were, and they were from your facility.”

Wow. Every hope and every dream we ever had culminated in that one statement. Why? Because that’s exactly what we have been aiming for all along.

When Kelly was born we asked ourselves where the beloved community would come from that we prayed she would belong to as an adult. We checked out various living situations, and we really just didn’t find it at all except in a very few extraordinary places, and we’ve worked very, very hard over the past 19 years trying to turn Down Home Ranch into it.

I’m far from naïve. The beloved community can, and often does, drive us nuts with frustration. The beauty of it reveals itself shyly, fleetingly—floating by on gossamer wings.

More often, we are plagued and puzzled by its absence, by our inability to get it right. We do live in reality as created by members of the human species.

But at its best, oh my.

Seeing Rebekah welcoming the dawn with prayer flags as praise music boomed out of the living room.

That was it.

Getting together with fellow staff ladies together last Friday evening for a potluck and a chance to share a little of our non-duty lives with one another. Nothing profound—sing a little, eat a lot, pray some, and end the evening watching a DVD of a female comic who had us howling with laughter.

That was it.

And the day after the cruise last year, the president of the Elgin Chamber of Commerce called up to say a man had contacted their office wanting to know “who those fantastic people were on the cruise.” He’d been so impressed with our Ranchers, how they treated one another and other people, and with our staff—how they treated the Ranchers.

That was it.

I first found it at St. George’s Episcopal Church in Austin. There was a reason that Kelly and St. George’s came into our lives at the same time: We had to experience it before we could ever hope to help it come about.

“Faith is the substance of things unseen, the evidence of things hoped for.”

And that is the very foundation of it.

Rebekah's Smile II

Well, I promised Rebekah I'd put a tune to "Rebekah's Smile," the poem I wrote her last year for her 25th birthday.  You might recall she asked me about it after Kelly and I sang to her on her 26th birthday.

But I couldn't come up with a tune, and then Rebekah's dad, Fr. John, told me that some of his parishioners at St. Francis, Janie Stein and Martin Bates, were working on putting the poem to music, so I desisted my efforts to see what came of theirs.

A few Sundays ago they were ready to debut the song, so I trundled over to College Station for the morning service, which was delightful.  (If you ever have a chance to hear Fr. John preach on the gospel according to Charlotte's Web, don't miss it!)

After the service and before falling upon the Second Sunday potluck, Janie and the choir passed out copies of the words to Rebekah's Smile.  Rebekah stood, smiling of course, as they began.

Soon there wasn't a dry eye in the crowd.  By the end of the song, Rebekah had been overcome herself and burst into tears, but they were happy tears and Mom Rita and sister Sarah quickly set things right.

This was Janie and Martin's last Sunday at St. Francis, so the congregation wrapped them in a beautiful woven prayer shawl to comfort and protect them as they make their way to Colorado, where they will visit their kids and love on their grandkids for a few months.

I got the music from Janie for the song, and Rebekah's been asking me to sing it for everybody at the Ranch, which I will do soon.

In the meantime, just in case you're interested, here are the words of the song:

                            Rebekah's Smile

Rebekah's smile lights up the world and seems to say,
That everything that worries you will be okay.
Today her laughter fills the sky with happy song,
And if the storm clouds come, it's not for long.

            Rebekah's smile, I wouldn't trade it for the world,
           Not for diamonds, not for gold, or even pearls.
           It breaks like dawn that comes after the night,
           A blessing setting every trouble somehow right.

She runs to throw her arms around you, glad you're there.
Though other people now and then will stop and stare.
I don't know just what they're thinking when they see
How love can be so simple and so free.

          Rebekah's smile, I wouldn't trade it for the world,
          Not for diamonds, not for gold, or even pearls.
          It breaks like dawn that comes after the night,
         A blessing setting every trouble somehow right

You know, the world could learn a thing or two,
From gentle souls who only care that you are you.
You might never win a prize, or make a fortune big or small,
But if you're Rebekah's friend, you've got it all.

Time to Call it a Day

Okay, the party’s over, and it was a grand success.
Were there glitches? Oh, yes.

However, they were not ones that were apparent to the assembled crowd, which overfilled the Parish Hall at St. William, and that’s a mercy.

Within the hall itself magic happened. The food from Southside was wonderful, as always. The sound system was just right—clear as a bell and loud close to the stage but conversation-friendly away from it.

The audio-visuals—a 365 rotation of beautiful slides assembled by our marketing friend Kyle, and a short clip of our Ranchers produced by UT student Michael David were incredibly touching, especially combined with Jerry’s little talk about the mission of Down Home Ranch and what we’re trying to accomplish here.

And the band—oh my gosh! The three impish angels of the Quebe Sisters Band fiddling and singing, guests shuffling and swinging, Ranchers mixed seamlessly among us all…and people actually drove from San Angelo to be there because of the band!

Magic, sheer magic.

Auctioneer Gayle Stallings gave the evening shape and focus, and ensured that all concerned had a fabulous time.

I was so tired at the start of the evening I thought it was something I’d just have to make it through, but as old friends and new filtered into the hall it had the same effect as the campers arriving for Ranch Camp: with each new arrival, my energy came back.

I danced the night away, with friends, with Ranchers, with Jerry, with nobody at all.

I have often said that the most wonderful thing about building Down Home Ranch has been the constant stream of people coming forth to offer the best of who they are and what they have.

Two of them showed up just before the Gala, in response to my blog of March 25, just a trial run to see if it was a match, and it looks like it is.

And the funny thing was, they hadn’t even read it.

Like I said.  Magic.

Hector and Ashley

A surprising joy of becoming the parents of a child with Down syndrome is meeting so many families you wouldn’t otherwise get to know.

With them you share joys and sorrows about which most of the world is happily unaware. You are on a journey together, and you learn to rely on and trust one another like soldiers in a war zone.

And as you witness other families’ struggles and victories, you are sometimes privileged to see the human spirit at its best, inspired by, made strong by, and led by love.

But on occasion, doing so is almost more than you can bear.

Jerry and I met Hector and Ashley when our Kelly was in primary school and their Cristina was a toddler. They were much younger than we, but we clicked right away and discovered many things in common.

Hector and Ashley met and married at A&M and bleed maroon. Cristina was their first child, followed swiftly by two more little girls.

When we started Down Home Ranch, Hector and Ashley were among our earliest and most ardent supporters. Ashley served on the Board of Directors and the whole family fell out—and still does—for every event, big or small.

When they discovered that Ashley was pregnant with their fourth child, we rejoiced with them.

Things proceeded happily along, until one day I received a phone call in my office from Ashley.

“Judy,” she said. “Our family needs your prayers. There might be something the matter with the baby.”

She was in the fourth month, and a routine sonogram had picked up some disturbing information—the baby’s skeleton was not developing normally.

“Downs again?” I asked, but she said no, that it seemed to be something totally unrelated, maybe brittle bone disease or some kind of dwarfism or some combination of both. They would have to wait a while for more tests.

I asked her how she and Hector were doing, and she said okay. The baby was a boy. They’d found that out, too.

When I got off the phone I looked up brittle bone disease and my heart sank. Affected babies sustain massive fractures just from being born, and spend their lives in pain recuperating from one break after another. I couldn’t imagine Hector and Ashley and the girls having to witness their little one suffer so. I prayed hard for dwarfism. That was manageable, I thought. Sure, there would have to be lots of accommodations, but this family was used to that.

The rest of the pregnancy was filled with questions for which there were as yet no answers. The amniocentesis shed no light. Ominously, one of the possibilities mentioned was Osteogenesis Imperfecta Type 2, the most severe form of the brittle bone syndromes. If the baby had that, he would most surely die shortly after birth.

No one who knew Hector and Ashley doubted that they would continue the pregnancy, whatever the outcome. Even so, I still cannot imagine the courage it took, knowing there was a chance they would hold their baby for only a few minutes and then say goodbye.

But Hector and Ashley already knew that blessings come in all guises. This tiny boy, Hector David Sanchez was, and always would be, their son. They would keep him safe where he was for as long as they could, and hold him for his time on earth. He would know the love of his mother and father, his sisters and grandparents. They would place his future in God’s hands, as in truth, all parents must.

Ashley opted for a caesarean despite the fact that she’d had no trouble delivering the girls. She wanted to spare the baby the trauma of natural birth.

Hector David was born July 20 2001. It was immediately obvious that he would not live long.

The family took turns holding and loving him. He was baptized by their parish priest, and after 45 minutes, his little life ended.

When Ashley recovered from the surgery, baby Hector David was brought to Down Home Ranch, and his ashes buried in Sara's Garden under a large cedar elm, where a white river rock marks the space.

Hector and Ashley visit the spot during their many volunteering stints, and when Christine—now a lively, lovely teenager—arrives and departs from summer camp.

The Sanchez clan remains a happy, healthy family of six, from which one has departed, leaving behind a legacy of great love.

And life goes on.