Monday, June 28, 2010
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.
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.