Col. Don Rettberg, Jo, and Don, Jr.

Last night we attended the Northwest Kiwanis' farewell dinner to a family that made a huge difference in the lives of so many families, including ours, in the days and years following the birth of their son or daughter with Down syndrome.

Jo and Don Rettberg, with their son Don, Jr., are moving to Ohio to be close to their daughter Sandy and other family.  They have been a fixture in our lives for 30 years now, ever since Jo visited Jerry and me at St. David's hospital the day after Kelly was born.

Jerry and I had entered some form of suspended animation following the diagnosis the night before.  We hadn't had the horrible experience from our doctors (you know, the "she'll probably never walk or talk or..." bit).  In fact our pediatrician was upbeat and helpful, assuring us that much could be done and that she knew we were "going to have a great time with this kid."

Still, I'd spent the drizzly night staring out the window into the courtyard and sleeping very little.  If I did doze off a nurse would be sure to pop in with Kelly, trying to get her to nurse.  However, Kelly refused to wake up for that or any other reason, and wouldn't open her eyes or cry for another two weeks.

Jerry?  He'd gone home and gotten very drunk.  The next morning, before the sun came up, he stood in front of the ARC of Austin, pouncing on the first employee to show up to ask, "What can I do to help my daughter?"

This day we were huddled in my hospital room with Kelly, trying to figure out what on earth the future held. 

There we'd been, perched on the edge of the almost-empty nest, ready to fly off to new adventures after an entire marriage built around the raising of my three daughters from my first marriage.  Then I discovered that I was pregnant at 42.  We cheerfully revised the family plan. 

Now we were hit with this.  New adventures, indeed!

A knock, a peek around the door, and into my room came an elegant, lovely woman with a stack of photo albums, saying she was from a parent-to-parent program called Pilot Parents.  Would we like to talk?

Oh, yes.  We definitely would like to talk.

And in that moment began a 30 year friendship that will end only when we're all dead and gone.  Jo Rettberg, and later her husband Don and son Donnie (at that time; he now firmly eschews the diminutive) had blazed a trail through the myths and realities of Down syndrome.

Her approach was simple.  She showed us Donnie's photo albums, beginning with his baby years and over all his eight years on earth.  What we saw was not the drooling dolt of mongoloid stereotype, the vision of our deepest nightmares.

We saw a bright, beautiful, happy boy, the apple of his family's eye.  We saw a family content with their lives.  In that one short visit we became aware of possibilities far beyond the realm of anything we'd imagined. 

Later Don would enlist Jerry's help to build a home for the Infant Parent Training Program.  Jerry would enlist Don's help in reaching out to others in support of building Down Home Ranch.

What the Rettbergs mostly helped us do was to see undreamed-of possibilities that took the place of the dreams that faded after our babies were born with an extra chromosome. 

And in no small ways, their faith helped us find ours.  When we were re-married in the Catholic church years later, the Rettbergs were there as witnesses.

Jo and Don took quite a bit of ribbing last night about their relocation to an area that has been blanketed under snow for the past several months.  Who retires to Ohio, after all?  But there were a lot of tears shed by tall, strong men (many of them retired military) as they choked out their funny stories and presented their farewell cards and gifts.

Because this is one family whose absence will be hugely felt.  Their lives have touched literally thousands in the Austin area, as they showed so many of us how to live with Down syndrome, and we have shown so many others through the years.

We will be ever grateful for their friendship. 

Bon voyage, dear friends. 

God's economy

There was a death yesterday at the Ranch, a small one.

The baby chicken Ashley was caring for so lovingly, who seemed to be doing so well, just (as my grandmother would have said) up and died.

Naturally most of the Ranchers had invested heavily in little Prancer's struggle to live, stopping by Ashley's office multiple times a day to ask about him.  There is widespread sadness over his demise.

Most people would probably shrug and move on down the pike.  In Mother Nature's economy, (which Prancer's mother shares, having ditched him out of the nest as soon as she detected something amiss) that makes sense.  Cut your losses, concentrate on those remaining.

But scripture says that not one sparrow will fall to the ground outside our Father's care.

As a young teenager, I bugged my grandmother about the parable of the lost sheep.  "But what about the other 99 sheep?" I would insist.  "He goes off and leaves them to find the one?  That doesn't make any sense!  The wolves will get five or six of them when he could just lose the one."

"That's what the Bible says," she would state firmly.  "It's not up to me to make sense of it."

Now far past my grandmother's age when we had this conversation, I think I understand.  God has a different economy altogether, one in which miracles occur.  How it works I could not begin to say.  It's what the Bible says.  It's not up to me to make sense of it. 

Sadly, Mother Nature's economy prevails in this old world, which is why babies with Down syndrome and other disabilities are generally aborted once the anomaly disqualifies them from joining our ranks is identified. 

Jerome Lejeune, the French scientist who discovered the third chromosome that causes Down syndrome, parted ways with his colleagues once abortion became the preferred "treatment" for it.  He was ostracized to a significant degree for believing that every life has value, and that people with Down syndrome are no exception.

"What do I become," he asked, "if I do not work to protect them?"  He understood the economy of God.

 So yes, little Prancer is gone, but he not fallen outside our Father's care. 

A Christmas Miracle (very small one...)

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

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

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

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

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

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

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

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

We promise.  We will.

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

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

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

Racing the Clock

Me visiting with a young attendee at the NDSC

Jerry and I, three staff, and two Down Home Ranch Board members attended the National Down Syndrome Congress Conference (NDSC) in Denver in mid-June.  Jerry and I went up early to attend the Global Down Syndrome Foundation Round Table on current advances in Down syndrome research and treatment.

Wow!  What a difference a few years make!  Down syndrome has traditionally been a subject few were willing to tackle in terms of research.  The reasons are complex and varied.

First, there's the matter of an entire chromosome being involved, not a single gene, as in cystic fibrosis.  It has only been in the last decade or so that researchers have been willing to tackle such a complicated and daunting task.  Where to begin?

Second, people with Down syndrome occupy a discounted niche in society, and many are perfectly satisfied for the main "treatment" for it to be early prenatal detection and elimination.  Why bother?

So, even though there are huge numbers of people with Down syndrome growing up or living with the effects of it, the amount of money set aside to study it and remedy it is minuscule in comparison.

But this is changing, and the reason it is changing gives me chills and thrills of happiness.  It's because--all over the country--families and friends of people with Down syndrome really, really love their kids and decided to do something to ensure a longer, better life for them.

Two attendees having their own dance

Of course we've always loved our kids, but we weren't always organized in ways to let us do anything about it.  We were marginalized and isolated and, until relatively recently, advised to stick them in a state school and forget about them.

When our Kelly was born in 1984, though, things had started to change.  Our pediatrician was knowledgeable and did not paint the grim picture presented to most new parents.  She was upbeat and told us right off, "You're going to have a great time with this kid!'

By happy chance, the NDSC convention that year was in San Antonio and my daughter Martha and I attended it when Kelly was just a few weeks old.  There were about 300 people total in attendance.  This year, believe me, we soaked up pretty much all the meeting and hotel space available in downtown Denver and the estimate of attendees is around 3,000.

Jerry with Michelle Whitten, founder of the Sie Center

At the Linda Crnik Institute for Down Syndrome Research at the University of Colorado Medical School, we heard presentations on proposed and ongoing research designed to mitigate or erase the effects of what is believed to be only a few genes on the extra 21st chromosome borne by people with Down syndrome.  We also heard the "good news" about families with a child with Down syndrome, which is that they tend to be happier than other families, with a lower divorce rate.  (Makes sense: all those daily hugs!)

At the conference itself we attended a variety of workshops, splitting up to be able to cover as much territory as possible.  Our group consensus is that each and every one attended was well presented and worthwhile, quite a testament to the organizers. 

Judy, Gigi, and Carol at banquet

Another exciting development to emerge from the conference is that the NDSC has embarked on an aggressive campaign to provide the medical community that will counsel prospective parents who have received a diagnosis of Down syndrome in their baby with accurate information.  Generally to date 90% of the information given is dismal and most of it isn't even up-to-date scientifically.

There is no way to even touch on all the important things we learned, but I encourage you to follow up with the links to websites included in this blog and below:

Down Syndrome Research and Treatment Foundation
Down Syndrome Research Lab, University of Texas at Austin
www.alz.org/research for research on Alzheimer's Disease
The Sie Center for Research http://www.globaldownsyndrome.org/our-story/anna-and-john-j-sie-center-for-down-syndrome/

Happy to be here

Volunteer Cacy Scott from Sunnybrook Christian Church of Stillwater, OK

I often correct people when they say Jerry and I "built" Down Home Ranch.  We're the Founders, but other people built it.

And I don't mean just the homes, the ponds, the greenhouses, the barns, and other structures.  I include the fences, the programs, and the organization.  They've done it every way from stacking chairs to digging postholes to trouble shooting technical glitches with our ever glitchy IT system.

Foundations gave us a lot of money to hire people to build these things, but volunteers enabled us to actually do it.  Over the past ten years alone we estimate that volunteers have contributed about 130,000 hours of love and labor.

Every now and then a closer relationship than usual develops with a group, as has been the case with Sunnybrook Christian Church of Stillwater, OK.  Rona Tracy, a church member blessed with a little one with Down syndrome, found the Ranch on the internet.  She got others interested and they decided to do a mission trip to the Ranch over spring break. We celebrated their fifth mission visit recently, and by now we all feel like family.

One special volunteer, though, has just a real special place in our hearts, and that's Cacy Scott, the lovely young girl pictured above kanoodling with Jenny (who loves to kanoodle!)

Cacy is 13, going into 8th grade at Pawnee Middle School in Pawnee this fall.  And she is a trouper.  She's here with her mom Rachel and siblings Wesley and Isabel helping out at Ranch Camp.

I first met Cacy when I walked into the Pavilion and was confronted with what seemed to be a face on the back of a head.  I quickly realized that the eyes, nose, and mouth were drawn there and that the two-faced little minx who talked a friend into the art work was quite a character.

At the age of two Cacy developed alopecia areata, a condition in which the body hair falls out, sometimes in patches, but often, as in Cacy's situation, completely.  Cacy's pate is egg-like in its smoothness, freckled and tanned by the summer sun.

I recently had my own bout with baldness and compared notes with Cacy on that matter.  Was she ever bullied at school?  Yes, but not because of being bald.  Did she get teased a lot?  Not really.  "All my friends are good with it," she says with a smile and a shrug.

I told her as long as I had on my wig over the course of my treatment, people told me I looked fabulous no matter how I was feeling, and so I had decided that people must judge other people's health largely on the basis of their hair.  She laughed. "Yeah," she said, "the hardest thing is people assume I have cancer and feel sorry for me.  One of the campers almost started crying."

Cacy loves the Ranch and comes whenever she gets a chance. She says she feels at home at the Ranch and with the Ranchers, because "They always remember me when I come back, and everything we did going back to the first time I came!"

Mom Rachel told me that Cacy is already lobbying to stay longer next summer.  I asked her what she'd done so far this summer and she said she was with the Blue Team for two weeks, assisting campers with activities and this week she's a floating CIT, which means she stacks a lot of chairs!

Cacy's plans definitely include going to college and studying to become a music therapist like her friend Robin Buford, who we agreed must be the world's most enthusiastic, charismatic, and entertaining music therapist.  (Needless to say she is a favorite with our Ranchers, too.)  After college will come marriage and a family, and travel in Italy.

But by now it was time to be off to blow up water balloons, help with line dancing, and stack some more chairs.

Every life has value

I woke up  in a cold sweat yesterday morning from a nightmare.

No monsters, just random things that I was somehow responsible for popping up, with no framework in which to approach them, no common cause with others to let me know what I was responsible for.

And the triggers for my nightmare?  One is the down-to-the-wire battle over abortion reform in Texas going on right now.

Another is going to Relevant Radio’s Women of the Well breakfast series last Wednesday and hearing Dee Ann Smith's story of her struggle with and recovery from alcoholism. 

A third was lunch with a close friend who is gay and really hearing—for the first time really hearing—that he has felt for much of his life that he really is worth less than others.   He came to love Down Home Ranch because it affirms that "every life has value."

People sometimes ask why we built the Ranch.  We’ve given them many reasons over the years, usually having to do with quality of life for our daughter, Kelly, who has Down syndrome.  But I don’t think we ever gave the truest, simplest, most obvious reason of all.

In fact, it’s so true, simple, and obvious we thought it had to be self-evident to anyone who would even ask.  The reason is this: Kelly is worth it.

Every life has value.

So eager was I to attend The Women of the Well event that I showed up at the Diocesan offices a week too soon and 25 minutes too early, and was so informed by the receptionist.  Undaunted, I reappeared last Wednesday with a deep sense of anticipation and excitement I didn't really understand. 

As I sat at the table waiting for the event to get underway, I thought, I wish I’d brought Kelly!

Although Dee Ann's talk was about her alcoholism, it touched poignantly upon the discovery of her true worth the eyes of God in the struggle.  It probed  the question of our dignity as human beings. 

Every life has value.

I thought about talks I've had with Kelly on occasion about abortion, and the fact that very few babies diagnosed with Down syndrome are allowed to live.  A very hard conversation to have, to which Kelly said in her simple, direct way, “I want to tell people to let them live.  I have Down syndrome, and I love my life.”

Remembering that, I recalled the meaning of the name Kelly: Warrior Woman, and smiled to myself.  Kelly and I had been signed up for the May 8th Walk for Life, but I'd gotten sick in late April wound up in the hospital so we weren't able to go.  Kelly is ready to tell people of her love for life, so this was a big disappointment for both of us.

Just then Dee Ann referred to Joan of Arc and her motto before going into battle:

I am not afraid of anything.  I was born to do this.

Hearing that was like receiving an electric shock.  I actually got the shakes at that point, and it wasn’t from the very strong coffee they had served, either.

Warrior Woman!  I was hearing a call to action.

Suddenly everything dovetailed.  No longer can I sit on the sidelines in the agonizing debate over abortion and other pro-life matters.  Over the past 28 years I have met and come to know and love literally hundreds of people with disabilities ranging from Down syndrome to autism, people whose lives are seen as so worthless that they are denied entry even to life's portal.

This is about more than a casual walk for a cause.  It's a call to use all the gifts God has given me, which very much include my daughter, to reach out to others and tell our story.
 

                                                                    *  *  *

Alas, this story cannot be continued on this site.  Down Home Ranch is a 501 (c) (3) organization and as such is prohibited from engaging in activities designed to exert political pressure and sway public opinion.  Although the role of education is recognized, the government defines “education” and in order not to pose any risk to the Ranch, I have established a separate blog.

I will continue to present Ranch news, staff profiles, and invite other members of the Down Home Ranch community to share their observations on this site.

I sincerely hope you will follow me to my new site as well.  As soon as I can get it up and running, I will let you know. 

 

 

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



Cathy Belliveau, Program Director
Down Home Ranch

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

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

Camp Days

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

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

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

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

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

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

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

Cathy volunteering at Special Olympics

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

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

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



Santa paid a visit

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

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

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

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

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



The pond at Travis State School

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

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

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

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

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

C. Belliveau