Sunday, June 23, 2013

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. 



Wednesday, June 12, 2013

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

Tuesday, June 11, 2013

Changes, by Judy Horton

Seems like I fell off the Blogosphere the past few months.

Lots of things got in the way of blogging.  I didn't want the blog to become all about my experience with cancer, which though possibly interesting, is not the purpose of this blog. 

I did post some on Kelly's struggles with my illness, which is quite pertinent to the topic.  The whole thing hit Kelly hard.  First she developed TMJ, probably because of stress.  It took weeks to get a good diagnosis, followed by several weeks of physical therapy, followed by more weeks of visits with dentists, oral surgeons, fittings for mouth splints, etc.  And because she could not eat she began dropping weight dramatically.

"When can I be me again?" she would ask. 

She could not sleep either, and came to dread nightfall and going to bed.  She began to imagine something was wrong with her hands.  She obsessed on topics about which she had anxiety.

We sought help for her and she was put on medication which helped almost immediately.  She began seeing a gifted counselor.  Laura, our driver, would take her to those appointments.  Laura is compassionate and understanding, with a real gift for conversing with our Ranchers, and I believe became an integral part of the treatment herself as she and Kelly chatted on the hour-long drives to Austin and back.

The therapist, Alicia, worked with Kelly on framing her experiences, getting through the tough times, and in general developing coping skills.  Kelly clung to her lessons like a life raft. 

Gradually, things began to improve.  The pain diminished, though it took weeks for Kelly to learn to "trust her teeth" again and begin to eat on the TMJ side.

Alicia told me she had never had a client who worked so hard at getting well as Kelly.  And she wasn't talking about just handicapped clients, but all of her clients to date.

When I jokingly complained about my hair coming back curly, of all things, Kelly told me, "Mom, you've got to be more positive about your hair." 

Today Kelly is herself again, stronger, wiser, having come through a scary time for herself and for her family.

As for me, here I am with curly hair, cancer-free, looking forward to a few more years on the mortal coil, and with a greatly enhanced appreciation for the love and generosity of friends and family who got me through the whole thing. 

Jerry and I realize very clearly now that time may be very short indeed, and we have dedicated ourselves to spending more and better time with each other and doing those things we've always meant to do but have put off. 

And so I retired on my birthday in May.  Officially, irrevocably.  Jerry has presented the Board with a plan for his retirement transition, and we are working on our last big fund-raising project, The Founders' Legacy.  You'll hear more about that.  I promise.

As for this blog, I'll continue to write occasionally about issues families of people with intellectual disabilities face.  I also want to continue introducing our staff and writing profiles on them.  AND I want those staff to begin writing for the blog should they feel so inclined.

So tomorrow Cathy Belliveau's piece on growing up on the grounds of the Travis State School will be the first of a series.  Cathy is the Ranch Program Director, and the first time she saw the Ranch it reminded her so much of those good days at TSS, where her father worked and the whole family volunteered, and where Cathy found her lifetime vocation.

Cathy now lives at the Ranch in a little cedar cabin with her two dachshunds.  She works 60 hour weeks (on the easy weeks) doing everything from high-level administrative work to chasing chickens in the evenings, a task she has finally delegated to Michael.  Jobs descriptions at the Ranch rarely cover it all...