Witnesses to their lives



Kelly, age seven, with wild plums



Jerry told me last night that he'd talked with a grandmother who'd gotten in touch with the Ranch wanting to donate several hundred dollars from sales of the book she wrote about her young grandson.  Of course we were delighted, and want to see that book, too.

I woke up this morning thinking about this grandma, anxious to hear her story. 

I know I will hear echoes of our story it it. 

We know this feeling so well.  In the weeks after Kelly's birth, little songs began to came over me as I rocked her. 

One went like this:

No less a miracle is my child,

Bright flower from an autumn garden.

Reaching for the sky, never stopping to ask why,

No less a miracle is she.

And did I ever really feel

This child was somehow just not real?

A child of no tomorrows,

Whose song no one would sing?

When this child brought the world to me

And opened up eternity

On life's unending wonder,

Of joy's eternal spring.

No less a miracle is my child,

My little flower from an autumn garden.

Reaching for the sky, never stopping to ask why,

No less a miracle is she.

I know I will this recognize this grandma's book for what it is--a testimony to the love this baby boy awakened in her and in her family, something real and tangible that says to the world:  This boy matters.  This boy has a wondrous life to live, too.

And we who love him will be the witnesses of it. 

Oh, California!

Kelly, Alaina and I are back at the Ranch, tuckered out from the great California adventure.

Alaina and Kelly at entrance to Disneyland

We spent Wednesday at Disneyland, which is just a few miles from my cousin's lair in Laguna Woods.  Cousin Melanie served as tour guide and inside dopester for the day. 

Once there, we faced a typical dilemma: which park to go to, Disneyland or Adventureland?  The girls don't like wild rides, but they are very concious of being adults, and I was afraid they would disdain the fairy tale and princess cultures of the old park.

Our kind of ride

Not to worry!  The huge carousel was a hit, and they even stood in line for Dumbo, although they didn't use the joy stick for most of the ride.  I suspect Kelly, who hates heights, was the reason for that.  At one point, though, Alaina grabbed it and up we went.  Unfortunately I wasn't fast enough to catch the look on Kelly's face.

The day was warm, but not hot, and the crowd was small.  Waiting was minimal for the rides.  The main attraction, however, was Main Street--getting pictures taken with characters, eating ice cream, and shopping for the boy friends.

We had dinner reservations at the Catal Spanish restaurant, a "Disney-dining experience" I'd made reservations for the day before, so about 5:00 we availed ourselves of the restrooms in City Hall as we made ready to go eat.

Signing in the plaza

While inside we heard the sounds of a band playing.  Coming out we saw that a flag ceremony had begun in the Main Street Plaza.  Hey, if there's music, we party, so over we went.

A barbershop quartet was singing God Bless America.  Kelly and Alaina stood to the side and began signing the words, very intently and seriously.  The color guard approached and began taking down the flag and all were invited to join in singing the national anthem.

Eyes were equally on the proceedings and on the girls as they signed along, and not a few welled up with tears as true patriotism overrode the staginess of the event.  This was easily the high point of our delightful day at Disneyland.

Ensconced at Catal and the sole focus of the extensive wait staff, we relaxed with cool drinks and pondered the menu.  Pat, Melanie and I went for the paella, but the girls are not so adventurous, so the waiter deftly worked with them to identify a dish they'd enjoy.  I tried not to think about the fact that they'd had been as happy with a $10 hamburger as their $30 entrees.

Said paellas were outrageously good, worth every penny.

After dinner we strolled around listening to street musicians, and the girls were captivated by Drew Tretick, from whom we each bought an album.

Loved it and had to have it

Thursday was more laid back.  Cousins Sherri and Steve had us over to their place for pizza.  The girls lounged in the hot tub and pool as the sun went down.  We ate pizza and laughed over old times and  family adventures in the good old days.  (Melanie says I was her "Auntie Mame.")

Alaina relaxes in the pool

Friday morning we were out the door by 5:20 AM to catch our plane. I'd caught on by now to request pre-boarding so I could be sure to sit with the girls.  When the skies got rough a few hundred miles from Austin and we were rocking and rolling Kelly got scared.

Alaina leaned over toward her and stroked her arm.  "It's all right, Kelly," she said. "Jesus will take care of us."

Kelly replied, "Yes, he will and everything will be all right."

And I wasn't needed at all.

When we got back to the Ranch Kyle and Sterling were waiting.  Sterling came tearing up to Martha House on his bike to help carry luggage into the house.  He and Kelly shared a shy kiss and she gave him his present. 

"See you at the Pavilion!" he cried, and headed back up the road hooting and hollering like Tarzan.  Jerry and I laughed.  Kelly and Alaina got up to the Pavilion to rejoin their friends and things were back to normal at Down Home Ranch.

On the Road Again

In the "uncomfortable" days following my surgery in early March, I wrote my counsin Pat in California: "I'm in 'get me outta here mode!'"  I sure needed something to look forward to.

"Come on out," she replied, so Jerry kindly booked flights for me, Kelly, and Kelly's buddy Alaina to visit "the cousins" in California.  We planned it for this week with the assurance that I would be recovered and literally ready for flying high, which I was, if just barely.

Waiting for flight at 7:00 AM in Austin

 Kelly and Alaina have been terrific traveling companions, cheerfully handling all the luggage, including mine, since I'm still limited in what I can heft.

Kelly began stressing about getting her watch changed to California time two days prior to departure.  I told her I was not attempting to change her watch to conform to California time.  Only Casey seems to be able to do this, and during the switch from Standard to Daylight Savings Time she is consumed with resetting all the Ranchers' digital watches, no two of which work exactly the same way.

Kelly agreed to keep her watch on Central time so she would know what Sterling and the other Ranchers were doing at any given hour.  She could ask me or check for the local time on her cell phone.

Sleeping on plane at 9:00 AM over AZ

I remind myself that for Kelly, who copes with her disability by careful attention to scheduling and routine, it's very disconcerting to have time go squirrely and loosey-goosey on you.

Similarly, Kelly is not flexible regarding meal schedules, which has called for a lot more flexibility on my part.  For Kelly, if you're in one time zone at noon it's time for lunch, and if you enter an earlier one, it's time for lunch again! 

Well, yea!  We're on vacation.  What the heck.

Yesterday Pat's daughter Melanie took us to the Ocean Institute at Dana Point. 


Dana Point Tide Pool Basin

This is an enchanted cove, nestled at the bottom of vertical cliffs against which pelicans fly in formation, casting their shadows like something out of Jurassaic Park. Kelly and Alaina sunbathed while we searched for anemones and critters among the beautiful rocks.

Pat and I sunburned the tops of our feet.

My sunburned feet

Later we dropped by Melanie's so Kelly could meet cousin Cory, at 15 years six feet plus tall and still ascending, a star shooter for the Dana High basketball team.

"How many cousins I got, anyway?" wondered Kelly aloud as we drove back to Pat's place.

Last night after supper we went to see Soul Surfer, the terrific new movie about Bethany Hamilton, who lost her arm at 13 to a shark and came back to build a career as a professional surfer.

Tomorrow it's Disneyland, with dinner on Main Street.  We'll go late and stay into the evening.

Meanwhile back at the Ranch, Jerry reports that this year's round-up to vaccinate the cows, bring in Mr. Bull for another round of bovine reproduction, and castrate the little bull calves (sorry, Dude!) went very well.  Sterling, Travis, and Kyle were the wranglers for the day, and Jerry was super proud of them.

Jer promises to post a blog on it, maybe tomorrow.

Appropriations Time

We're living through parlous times at the Ranch. 

The Texas Legislature is in session, something that happens every other year, and is usually a target of political cartoonists and an occasion for jokes about lawyers and politicians.

The mood's a bit more somber this year, however.  Like other states, we have our tail in a crack, and since we're a really big state, it's a really big tail, and it really hurts.

Senate Bill 1 was revealed about a week ago, and some of its provisions suggested cuts to human services, including those with IDDs, in the realm of 29-47%.  Oh no, Mr. Bill!  (Specifically, SB1)

For most providers, if things were to settle out there, it would answer the question of, "How do I cope?"  The answer would be, "I don't.  I go out of business and do something else with my life."

Jerry and I wrote testimony to be delivered at the SB 1 hearings having to do with programs and agencies that serve people with IDDs.  I walked into the hearing and immediately recognized half the room--parents of kids we've known forever, providers, advocates, support group representatives, and lots and lots of people currently receiving services, many in wheelchairs.

As I walk in, I recognize the woman giving testimony.  She's the mom of a young man who was brutally damaged in infancy by a babysitter.  I have known this woman for years, not well, but aware from a distance of her struggles in the disastrous period following her baby's injury, through her divorce and her ex-husband's suicide.  Through the legal proceedings, and eventually the perpetrator's suicide.  I have long marveled from afar at the sheer courage it took for her to build a noble and honorable life for herself and her boy out of the splinters and shards of what remained.

Now her son is grown.  She depends upon a government program to help her care for him.  It has made the difference between simply going on living and having a good life.

Someone asked me recently, "Why should the government be responsible for your daughter?"  It wasn't asked in a hostile manner.  It's a good question.  Why, indeed?

And it's the question at the very heart of many of our political Gordian knots.  You think you have a firm grip on an opinion, and you tease out a strand, and you follow it back, and you realize, "Whoa!  I didn't know this was going to wind up there!"

I at least seem invariably to wind up in a maze of yes, buts.  I can only imagine being a legislator and having to reconcile reality with the testimony given by my friend.  Whatever whoever did that wound us up in this pickle may be important to know, but it doesn't help figure out what to do now.

What then shall we 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!

Across the Universe: Down Syndrome and Autism

When you have a baby with Down syndrome, life suddenly gets very complicated.  You feel like you've been kicked out of one universe and somehow wound up in another.

But after a while the tears dry up and the fears die down and life begins to resume a patina of normalcy.   

The baby?  The baby's adorable.  He's not a baby with a difference to you. 

He's your baby, and you take care of him, and you fall in love with him.

The local parents' group has reached out to you and you meet a lot of wonderful people and their kids with whom you share this common bond.  It's such a comfort.

You learn a lot, so you work a little extra harder to make sure your baby gets the best start possible.
 
And life goes on.

And then, one day, life stops, and you realize something is very different, and very wrong.

The experts assure you that just as all babies are different, all children with Down syndrome are different and they develop at their own pace and in their own time. 

But you know, and your family gradually starts slipping back into that other universe, the one where everything is strange, and you don't know the rules of being there.

After a while, the experts confirm what you've known for a long time:  There's something else going on with your child besides Down syndrome.

And that thing is autism.

Autism occurs in about 5% of children with Down syndrome, a considerably higher rate than with the typical population.  Most often it's mild. 

But sometimes it isn't.

We are friends with a family whose son with Down syndrome is severely affected by autism.  We have worked on projects together, and they've visited the Ranch on many occasions.  We've enjoyed dinners out as couples, and in their home while their son was under the care of someone else.

Then several weeks ago we invited our friends and another family, also with three children, including a son with Down syndrome, to come out to the Ranch, have dinner and a swim, and spend the night in our cabins.

We had been around our friends enough to know that their son, whom I'll call Sonny, requires constant vigilance, but he loves the water so our plans would fit well with his needs.  Maybe it would even allow for some visiting time with his mom and dad and the other family.

It was a beautiful evening.  It was, however, a real eye-opener, too. 

Here we thought we'd had some idea of life with Sonny, but in truth we'd known nothing at all about what it takes minute-to-minute to keep Sonny and those around him safe.

First we noticed that our friends were hyper alert at all times--Sonny's sisters as well as his parents.  Someone's eye has to be on Sonny every moment of every day.

Fortunately, Sonny was mostly content to stay in the pool.  Our friends had recently invested in a pool for their home and say it's the best money they've ever spent!

But still, Sonny could not be trusted close to the other family's smaller children.  He'd grab their hair or do something similar if he had the chance.  His sisters--one older, one younger--were quite adept at redirecting him when a potential opportunity for mischief cropped up.

In a lull between interventions, Sonny's mom and dad spoke of having had the chance to attend a Joni and Friends family retreat a few weeks before at Camp Allen.

"We gave up vacations a long time ago, you know," said the dad.  "Sonny's environment has to be totally secure.  He tears cabinet doors off their hinges if he gets a chance.  He has no sense of personal safety and he doesn't sleep.  He will walk out the door in the middle of the night in a strange city, so we always have to move the beds to block the door so he can't.  This retreat is the first time ever we've just been able to go somewhere and turn Sonny over for the day to someone else, and we and the girls could enjoy the activities and surroundings, but still come together as a family for part of the day, as our whole family."

They'd waited three years for their name to come up on the Joni and Friends list.

Sonny's autism is so profound you don't even notice the Down syndrome.  I recalled the first time I'd talked with his mom about his condition. She had confided that she was depressed about his current educational goal as laid out in Individual Education Plan at school: by the end of the academic year, Sonny was to be able to board the bus by himself--not board the bus, find his seat, sit down and stay there for the ride.

Just go up the stairs of the bus.

Sonny was ten years old.

I try to imagine life for Sonny's family.  There you are, coping as best you can, more and more isolated as your son grows older, bigger, and stronger. 

You have little in common with the parents on one side of you who have raised their daughter with Down syndrome into a cheerful and competent young adult.  Neither is your experience like the young family whose eight-year-old son with Down syndrome is playing games in the water with his siblings and friends, so able and tuned-in it's hard to believe he has any disability at all.

The Down syndrome pretty much excludes you from the autism community, and the autism pretty much cuts you off from the Down syndrome community.

And so you live, stranded in that other universe--loving your son, doing the best you can--coping, coping, always coping.

And it's really, really hard.


Images courtesy of:
universe: Google images
boy in pool: http://www.rivercitypools.com/images/boy_swimming1.jpg
baby with down syndrome: dsansw.org.au

Life Its Own Self

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

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

Time froze.  My ears stopped hearing. 

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

Hand in,
hand out.

Bright,
dark. 

Fingers open,

fingers closed.

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

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

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

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

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

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

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

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

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

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

Kelly is enchanted by bubbles

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

En-Courage-ment and the National Down Syndrome Congress

With my recent postings on our trip to Florida with 11 residents to the National Down Syndrome Congress, some may be wondering about our enthusiasm for future conventions.  I can only reiterate that Disney World is a great place to vacation, but far from an ideal place to have a convention.  Last word on the subject.

The convention itself was excellent, as usual, and yes, we'll be back as often as we can manage.  But as to why it's so important, let me tell a story.

Kelly Page Horton was born September 18, 1984.  Like most parents with a new baby with Down syndrome, we were stunned, crushed, confused, and anxious.  Kelly was born with a condition called "leukemoid reaction."  This was before the internet and our doctors mistook it for neonatal leukemia.  Then it began remissing; the blood started looking better.  The oncologist found a few articles that alluded to the fact that the condition might be temporary but concluded that if it remissed it would likely come back in a few years, between the ages of two and four.

After the bone marrow aspiration at two weeks, I holed up in the house with Kelly and refused, absolutely refused, to subject her to any more tests.  Then I learned that the 13th Annual Convention of the National Down Syndrome Congress would be held in San Antonio in October.  Daughter Martha, then 20, and I made plans to attend.

The day before we were to drive to San Antonio we received Kelly's karyotype, the picture of her chromosomes. Since she demonstrated all the major signs of Down syndrome, there was little question of whether or not she had it, but the karyotype contained a big surprise after all: instead of one extra 21st chromosome, Kelly had two!

All I could think was this: if one extra chromosome can cause all that damage, what would two be capable of?

Martha and I entrusted Kelly to big sister Janny, my mom Dorothy and Jerry's mom Estelle.  We headed south in search of the holy grail that would contain the answers to my many questions, not the least of which concerned my family's heartache.  As a prototypical "older" mother with a high chance of Downs, I thought I'd been prepared for this possibility, and to a degree I was.

But I was not prepared for all the rest that came with it--most everyone we knew acting like there'd been a death in the family instead of a birth, leukemia (albeit deferred), even my frustration with the baby refusing to even wake up for two straight weeks after birth.  If I'd only known what some families go through (heart surgery at five days, for example), would I have felt better?  I doubt it.  I'd been ready for the idea of Down syndrome, but hardly the reality.

Once at the conference we walked into a ballroom full of families with kids with Down sydrome of all ages--newborns, toddlers, school aged, all the way to older adults.  And they were doing all the things you do with kids--chasing them, talking to them, changing their diapers, playing peek-a-boo, separating siblings, correcting them, loving them.

"On my God," I thought, "There is life after Down syndrome! And it looks pretty normal!" 

The first speaker up was Dr. Jerome Lejeune, the French physician and researcher who co-discovered the extra 21st chromosome that causes Down syndrome in 1959.  I had great difficulty understanding his remarks, but none in recognizing the deep love and compassion this great man held for all children, everywhere, at any stage of development.  After the lecture I stood in line clutching Kelly's karyotype.

Dr. Lejeune took the proferred document and studied it intently.  He looked me in the eyes and smiled.  "How old is the child?" he asked.

"Five weeks," I replied.

"Then you are very worried indeed, I see, but there is no cause.  One extra, two extra makes no difference.  She will develop as most children with Down syndrome do."

My relief was such you'd have thought  I'd been told Kelly would someday be awarded a merit scholarship to Stanford.  No difference! 

Next on my agenda was the "Leukemia and Leukemoid Reaction" workshop, delivered by a physician associated with the City of Hope cancer and leukemia center in Duarte, CA.  I sat through the workshop and then approached him.

"I assure you that your baby's condition will continue to remiss, and she will have no greater chance of developing leukemia than any other child with Down syndrome over the course of her life, " he said.  I hurried off to find Martha and share the good news, and then hustled off to find a phone to call Jerry and the grandmas.

For the rest of the convention we relaxed and got to know the families around us.  We went to all the workshops having to do with early intervention and learned a hundred ways to help our baby. 

I understood for the first time in my life just how powerful and real the term encouragement is.  The "cour" part of the word means "heart," and I literally felt as if my heart had gone missing and then been returned to me, stronger and full of hope for the journey ahead.

I understood that there is life with Down syndrome, not just after the diagnosis of it, and it's a good life after all.  I'd met the moms and dads and kids at all stages of development and from all walks of life.  I'd joined a pretty exclusive club I never sought admission to, but have come to cherish over the years.

So thank you, NDSC, for leading the way out of darkness almost 26 years ago, and for continuing to do so today.  This convention was no different.  It was filled with wisdom, love and hope for the future like all the rest.

And I got to attend it in the company of 11 young people, including my daughter, who have taught me more and given me more happiness than I ever thought my heart could hold.

En-cour-age-ment.  Pass it on!

Sara's Garden: A Father's Love

A new Program Director came in a few months ago, name of Phil.  Walking around the Ranch, Phil discovered an out-of-the-way garden, neglected and umkempt, much like the garden in the well known book The Secret Garden.

He asked me about it and I told him, shamefaced, the story of Sara's Garden--that it's a memorial garden planted by a father in tribute to his baby daughter.

Phil talked to Brian, our grower, about assigning the Garden Team to bring the garden back to life.  Together they worked out a plan, and at least a few days a week over the past several weeks have been working diligently under the oversight of Lori, the Garden Team Leader.

I was talking to Marci, our Lead Teacher, about the garden and soon realized nobody really knew the stories behind it, least of all the Ranchers who were restoring it, so this afternoon I went over to talk to Andrew, Sterling, and Matt about the work they were doing.

We settled down in the Gazebo, and I began with the story of baby Sara, after whom the garden is named.

It was early 1992, and a doctor who'd treated Kelly early in her life called us up to ask if we would mind his passing our name and number on to a family he was working with.  Their baby girl had Down syndrome, like our Kelly does, and she was in the process of developing leukemia.  At that point baby Sara's dad John was staying home to care for her in semi-isolation, since she was vulnerable to illness and infection because of her compromised immune system.

We happily agreed to connect with the family, and John confessed he'd like to come out one day a week just to work hard and discharge anxiety over his little one's precarious health.

Soon John was coming out every Friday and attacking the brush, mesquite, and old barbed wire fences that abounded on the Ranch's acreage.  He and Jerry felled trees (terrifying to witness!) and John planted many interesting things--variegated corn and acres of sweet potatoes among other things.  The latter were so abundant that one day Jerry stood looking them over and said, "John, what in God's name will we do with all these sweet potatoes?"

Out of that came the Yam Bake, but that's another story for another time.

Baby Sara, who was then approaching two years of age, continued to progress into leukemia and soon the time came to begin chemotherapy.  John and Mary Jane both had to stay much closer to Sara during these times.  No more charging around the Ranch for John.  Days became consumed by hospitals and doctors, fear and hope for their tiny girl.

Sara did well through all the chemo, bouncing back each time.  Until the last one.

We got the call that things were looking very bad.  The family was gathering at the hospital.  We were honored to be counted among them.  I divided my time between the chapel and the bedside where the parents stood watch in the pediatric ICU.

A priest had been called, and he anointed the Sara with oil in the sacrament of healing.  After some hours the watch ended, and two exhausted young parents returned home, bearing the weight of a loss no mom or dad should ever have to bear.

A few days after the funeral John showed back up at the Ranch again.  He began to clear an area--not too far, but not too near, either--from the little mobile home that served as we used to refer to, laughingly, as the Horton Home and the World Headquarters of Down Home Ranch.

Day after day John ripped out saplings, trimmed branches, and dug flower beds like a man possessed.  He created a flower garden in the shape of a butterfly.  Friends turned out to help him and Mary Jane plant the garden and flower beds with a riot of native shrubs, flowers and plants. A St. Francis statue was set to watch over the garden, and angels hung from the trees.

A young oak was planted, and Sara's ashes interred where its roots would grow.  It was a beautiful day. 

John, Mary Jane, and Sara's older sister Bonnie set about putting their lives back together.  In time Mary Jane was able to conceive another child, and Daniel was born.  The heartache remained, but happy memories and family life carried them into the future.

"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.

"One More Day of Freedom"

Tuesday June 22

Yesterday we had another beautiful day at the beach.

This time we brought umbrellas, mats, and folding chairs.  Kelly swam in a heavy T shirt to protect her from the relentless sun.  Despite frequent slatherings of high SPF sun screen, our skin tones are varying from lobster red to deepening tan.  By vacation's end we will--intentionally or not--all provide ample evidence of a week's vacation in Florida.

"I don't want to leave this vacation!" Kelly said at one point.

Then last night we decided to go to a movie.  Get Him to the Greek.  Ugh!

All we'd read was that it was funny.  There were a few funny bits, but the raunch far outweighed the merits (I'm being generous here using the plural, because the sole merit we agreed on was that we liked Russell Brand quite a lot.)

For reasons unknown we individually and collectively hung in til the end, despite the huge cringe-factor. Afterwards we all agreed that we would have been happy to walk out had one of us headed for the exit.  We still don't know why we didn't.

How to describe?  Juvenile--what's funny about vomit and feces?  Not much.  The "F" word?  Never was funny and the shock value wore out about 1969.  The focus on sex...please!  If it were that disgusting, meaningless, and degrading the species would have died out millenia ago.

This thing got great reviews from people I expect better of.  Big question of the evening: what does it take to earn an "X" rating these days?  If this didn't warrant it, what does?  Oh well, de gustibus non est disputatum. Tomorrow we're going to see Toy Story 3 to get the nasty taste out of our minds.

(All the above is to warn folks what they're in for should they go to that movie.  You may thank me now or later.)

Today we drove down to Sanibel Island, which is built up from the deposits of eons of currents dumping shells.  The sand is like talcum powder, the beach made up of shells.

After lunch at The Hungry Heron, we did a little souvenir shopping and headed for the beach.

Standing in the water, you can find all kinds of living mollusks by just wiggling your toes down into the sand.

We were enchanted when the pelicans began cruising in close to us and diving for fish.  Carolyn, Caitlin and I went further out into the water to check them out.  Caitlin said off handedly, "We wish things were more dolphiny!  We want dolphins to come and play with us!"

"Yeah, I'm sure if you saw a fin cutting through the water you'd hang around to see what it was," I said.

Not a minute later, a large, grey body arced through a nearby breaking wave.  We were in about 3' of water.  Our eyes bugged, we grabbed one another, and headed for shore as fast as we could go, which wasn't very.  (Caitie moved a bit quicker than Carolyn and I, however, because as she later reported, she'd felt a distinct bump shortly before our sighting.)

Once closer in we warned a family with young children and all retreated toward the water's edge.  We saw the critter breach a few times more.

We figured that, shark or dolphin, it had been attracted by the fish and the feeding pelicans and hugged the shore from that point on.  Whatever, it was an exciting finale to our day on Sanibel.

Once back at the house, we googled Sanibel beach and sharks and learned that indeed sharks abound off the popular beaches and that one should never 1) go into the water after 5:00 PM or before 9:00 AM 2) hang out near feeding pelicans.  Also, given the fact that we'd only seen one, it most surely was a shark and not a dolphin, who prefer to swim and hunt in groups.

The guide books cheerfully note that our chances of mayhem while driving in Florida traffic are billions of times greater than can be expected cavorting amidst the local marine life, but our story's just going to get better by the telling...

Other advice warned us against staying on the beach with nearby thunderheads, which we also foolishly did until I pointed out to Carolyn that they looked very like the clouds that excite the storm-chasers we watch on TV.  To appease me, we took down our umbrellas and headed for home.

Once showered and changed, we headed for the local Pig and Whistle English Pub for dinner and a pint.  Kelly didn't crank once about eating dinner at 9 in the evening, a true mark of her growing sophistication.  Turns out that the area we're staying in is a favorite for British nationals, and the pub does a brisk business despite having gotten its start in the pit of the recession.

On the way to the pub we stopped neighborhood traffic to gawk in true tourist fashion at 'gators lounging in the nearby waterway.

After way too much food we left the pub and Kelly said, "One more day of freedom!"

We made it back to the house with no further wildlife encounters.  The night was beautiful, half the sky pulsing with lightning, and the other  clear and starlit.

One last phone call to Sterling, and Kelly was ready for bed.

Wednesday, June 23

Today the girls headed for the beach and I stayed behind.  I was sure Kelly would stay behind with me and spend the day watching DVDs and having precious alone time, but this girl is in for everything that's happening.  I am impressed!

But I am happy tucked away in our lovely vacation home, letting my sunburn heal (didn't know that with a long-sleeved, buttoned-up shirt you can still turn into a crispy critter).

Tomorrow, back to real life.

"One more day of freedom," as Kelly says.

But There's Nothing There!

That's what the people in charge of the MARC Center in Rockdale reported in 1995 after a scouting expedition to Down Home Ranch as we prepared for the first ever Ranch Camp.

The Marc Center is an activity center/workshop for adults with intellectual disabilities.  We became acquainted with them through board members and volunteers in Rockdale, who encouraged them to think about sending their people to camp.

I have to admit: the physical plant at that time was unimpressive at best:  one very small trailer, one ancient falling-down barn. 

To complicate things, it was raining cats and dogs the day they came, so everyone had to crowd into our postage-stamp living room as Jerry spun his dream of acres of greenhouses, riding facilities, swimming pools, homes, retreat facilities, chapels, ponds, gardens, and cabins.

But, at the time, like I said: one very small trailer, one ancient falling-down barn.

But...we had a plan.

The Taylor National Guard post had offered cots and tents.  Port-o-potties could be rented. We would extend the porch roof out over the front lawn and eat on picnic tables.

Miss Gay (consummate home-schooler and scrounger) and I began scrounging and planning activities.  We lined up volunteers.  We arranged for fishing at a neighbor's pond.  We planned to take the campers swimming every afternoon in Taylor at the municipal pool in Murphy Park.

And after that summer Miss Gay and I could have gone on to careers as recruiting officers for the military.  Every hunk of young flesh that walked by became fair game to be pressed into service as a counselor.

Undoubtedly against their better judgment, the MARC people signed up to come, along with a group from Houston.

Finally the big day arrived, and with it campers and their hopeful, frightened parents and other caregivers.

We had no idea what we were doing, and I'm sure it showed. 

But our faith in ourselves was vindicated.  We created camp together.  Many of the MARC Center campers have returned year after year, making new memories and friends as they renew old ones.

One of our favorites, Jerry Throckmorton, died several years ago.  The town of Rockdale turned inside out to honor him, from the high school teams he supported, to the neighbors whose trash he hauled out on trash day, to the people he worked with in various jobs around town.  As for us, we'll never forget him standing in front of the mobile home, looking philosophical, and saying, "Yep, you've got a pretty nice little camp here."

We established a permanent scholarship in Jerry's name to help others share an experience he loved.

The facilities are a lot more impressive these days, but that experience is pretty much the same.  If it weren't, Ranch Camp would not keep growing from year to year, from a total of 23  the first year to  about 450 this year. Pretty much everyone who comes once, comes back, and new ones come every year.

We all agreed after that first session that we'd never had so much fun or worked so hard in our entire lives.


  

"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.

If I Needed You

Whew.

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

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

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

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

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

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

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

“What time?” she asked dubiously.

“About 4:30 would be good,” I teased.

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

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

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

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

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

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

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

Happy Birthday Dad

72 is a cool age

for

a

wonderful

special

dad

I’ve

got

since

1984

and

I

do

love you

very much

with all of

my heart and

my life too

I want my dad to be happy.

Jerry Wayland Horton

May 24th

1938

72 years ago

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

were my mom’s birthing coach

got me out that

is why

how much Sterling loves

you a lot and so do I

you’re

always

going

to be my Dad forever

when you walk me

down the aisle

on

my wedding day

I want to marry Sterling

can you and Mom give me away to Sterling he will

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

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

But I digress.

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

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

It was a sweet evening.

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

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