Tuesday, December 27, 2011

Santa comes of age

Years ago, when we'd just moved to the Ranch and Kelly was nine or so, we became friends with a family with a son with Down syndrome in his last year of high school.  The son, whom I'll call Scott, was a charmer--handsome, polite, and funny.

Scott loved the idea of living on a Ranch and saw himself as a real cowboy.  I pitched the idea of taking a barn management class with him so we could both learn best practices.  Each Saturday I would drive to Austin from the Ranch, pick Scott up at his home, and drive on to Lakeway to a large stable there where we would together learn about horse care, feeding, and "setting the barn fair."

We had lots of time to talk, and it was fascinating for me, because although we'd boldly launched this project of building a ranch for people with Down syndrome, the only people we knew with Down syndrome were barely out of diapers!

Toward the end of our class one day in mid-November, we were chatting about plans for the coming holiday season, Scott said he hoped Santa would bring him the Lonesome Dove video.

I was a little flummoxed.  Surely Scott didn't really believe in Santa still at age 19.  But, not wanting to burst some other family's Christmas bubble, I went along.

When I got home, I exclaimed to Jerry, "Scott still believes in Santa!"  We'd been dropping huge hints for a few years to Kelly, though she had yet to take the bait.

I was genuinely concerned as I met more and more families with adult children with Down syndrome who still counted on Santa to deliver the big gift.  I wondered how they could be allowed to come into their full humanity and assume the mantle of adulthood uncompromised by beliefs surrendered by most people by the third grade.

Over the years, however, the hints we pitched to Kelly grew to the size of A-bombs and yet she arrived at age 21 yes, still believing in Santa.  And there remains the fact that most of the other Ranchers do, too. 

What to do? And why does it matter so much anyway?  Where's the harm?

Well, for one thing, we didn't found the Ranch so that people could remain in perpetual childhood.  Yet, let's face it--the most engaging trait of people of all ages with Down syndrome is their childlike openness and sense of fun.  Engaging, heck, it's almost addicting! 

But there must be a way to allow them to grow into full adulthood, not as our wards, but as our friends and colleagues.  Yes, they will always need the assistance we can provide because of our (relatively) umimpaired cognitive abilities.  But trust me, we will always need what they provide, too.  They came into our lives, we came into theirs, and we have changed one another.  That's what communities do.  That's what communities are supposed to do--challenge all of us to be more than we would have been without one another.

Even though sometimes the challenges are not so fun.

So last week I was in my usual Christmas quandry about how to nudge Kelly into full understanding of the Santa Claus story. 

Christmas Eve we met our daughter and her family, and my sister-in-law and hers at Threadgill's for dinner and gift exchange.  The young people got into a discussion of when they'd learned about Santa.  Rachel, my granddaughter, said she'd sat in the driveway with her mom sobbing most of the afternoon, having realized at the same time the truth about the Easter Bunny and the Tooth Fairy.  Kelly paid attention.

Still, after we got back to the Ranch, she insisted on putting the plate of cookies out with a glass of milk.  Jerry and I looked at each other and shrugged.

Christmas morning there was the usual reprint of the Dear Virginia letter, and I casually handed it off to Kelly.  She sat on the couch and read every word.  "Hmmm," she murmured.  "Interesting."

"So, Kell," I said.  "Who is Santa Claus really?"  I was expecting to hear "you and dad," but my daughter is wiser than I give her credit for.

"Poetry, faith, fancy, love, and romance," she said, her finger marking the place on the paper.

Later, after opening her presents, she made a wry reference to "Santa-Dad." 

Tomorrow we fly to Kansas to attend the funeral of our son-in-law's mother, who died two days before Christmas.  We asked Kelly if she wanted to go or stay back at the Ranch.  Kelly hates funerals.

But she said, "I love Bryan so much.  I want to be there to give him a hug."

Welcome to adulthood, my daughter.

Picture credit: Crazy-Frankenstein.com

Friday, December 23, 2011

Stabat Mater

I woke up many times last night, thinking of our oldest daughter, keeping death watch in a hospital in Lawrence, Kansas, for her mother-in-law Nellie.

This same daughter became a grandmother eight weeks ago, and when people asked me was I really ready to become a great-grandmother I quipped, "Absolutely, yes, but I am a little dubious about being the mother of a grandmother."

But there's more than one kind of life passage.  This is big one for my girl, and I am mindful.  I myself kept a lonely vigil over my mother's dying one long winter's night 22 years ago.  Last night I marveled as the image of the baby I first held in my arms came continually swirling before me--awake and in dreams--only to be replaced by one of her sitting by the bed of a dying woman.

It was heartrending, in ways both beautiful and terrifying, bringing into stark relief the bracketing truth of my life, and yours.

I'm undergoing my own rite of passage this Christmas season, formally retiring from Down Home Ranch, closing down my office and stepping away from the day-to-day work of the Ranch.  It's time to turn those things I handled over to others for good. Young people have come along who know how to do them far better than I. (Thanks be to God!)

It's just time.  I'm dusting off my bucket list and seeing what's inside to occupy the years remaining, and a lot of it does have to do with the Ranch, no surprise.  My biggest dream is to see our chapel built on the hill where the old camp center stood, overlooking the Ranch and the pond, favorite haunt of the deer who come to browse and drink.

I have visions of myself as Anna, in her old age, spending her days in the temple, looking for the coming of the Lord.

But of course, He has already come, and has already made all things new, including me, and you.  Our happy task is to seek Him in ourselves and in one another.

It's been 20 years.  I look forward to however many more are granted me.

Merry Christmas and Happy New Year!

Wednesday, December 21, 2011

In Memoriam

We have just learned of the death of Ed Nowland, long-time friend of Down Home Ranch, father of Dr. Dan Nowland, and grandfather of many, including Dan and Sally's Kelly, born with Down syndrome 20 years and some months ago.

After Kelly was born, Dan and Sally asked to meet with us as parents of an older child with Down syndrome.  They relocated their joint veterinary practice to San Marcos from Rockdale to pursue what they felt would be greater opportunity for support for their little one.

Baby Kelly, surely the most adorable redheaded baby ever, died from complications of a heart operation at age five months, but remains ever a member of this sweet, funny, and loving family.  A beautiful gazebo built in her memory stands in Sara's Garden, our memorial garden for babies and children with special needs who have passed on.

For years after we started Down Home Ranch, Dan and Sally came out on Kelly's birthday with the family to donate a day of vet services in her name.  We put them through things most small-animal practices don't need to deal with on a regular basis and foisted off not a few stray dogs on them in the bargain.  They continue to provide services for any Ranch member who feels like a drive to San Marcos.

More than that, they have been faithful friends along the way. 

I never cease to marvel at the friends we have made along life's journey on what I now think of as "Route 21", the pilgrimage we begin when our little ones are born with that extra 21st chromosome--people we'd never had known otherwise, which would have been a great loss in our lives.

Our hearts and prayers are with Dorothy, Ed's widow, Dan, Sally and the girls, and the whole Nowland family.

Thursday, December 15, 2011

Life..with Down syndrome

Somebody else wrote the blog for today. 

Go to http://www.dispatch.com/content/stories/local/2011/12/04/a-chosen-child.html for an exceptionally honest, insightful, and lovely article about the decision to have a baby you know will have Down syndrome.

Wednesday, December 14, 2011

We were jolly by golly

Jason, Kara, Gigi, Mike and Valerie made it happen!
 Last night we had our annual Christmas dinner and secret Santa party.  Gig and the foodies outdid themselves, as usual, and Southside Market kicked in and smoked three yummy turkeys for us.

And a first!  The Christmas ham came from Eenie, Meenie, or Miney--our three lady pigs who were raised on the finest slops ever presented to Swinekind right here on the Ranch.

There was no contest for cutest person at the party
but Gracie Hall would have won it for sure!
 Several Ranchers' families attended, and pretty much all the staff.  The food was great, the company equally so, and God blessed us every one.
The Gabriel House guys, plus Ashley (who just had to get in on the act)
Matt, Mike, Mark, "AA", and Chris

Saturday, December 10, 2011

Movin' in

Ann, Jay, and Dave Jordan have fun with IKEA
It's always touching to see parents on the floor surrounded by nuts, bolts, pieces of wood and Ikea cartons.
Sterling welcomes Jay to Isaiah House
The U-Haul was in the front yard, the new Rancher was being greeted with whoops and hollers by his housemates, and mom and dad had that special look on their faces that said, "We can do this."

Don't know if they actually did do it, because I got busy with the Ranch game of musical furniture: this stuff comes out, this goes to cabin five, that goes to the craft room, and this other is consigned to oblivion.  Then I needed to make supper.
Jay, right, enjoys a Tex-Mex dinner with his buddies
However, I'm sure the room was occupied last night one way or the other because Jay was not leaving the Ranch!

We first met Jay in 1995 when he came to Ranch Camp for the very first time.  He was one of our younger campers, and we were a young camp, with very few facilities of our own, so we spent a lot of time borrowing those of the City of Taylor, driving our 13 campers to town to swim in the municipal pool and picnicking afterwards in Murphy Park.

Jay disappeared on one such mission and we finally called the police to help find him.  Luckily we found Jay before the police found us, so we were able to cancel the call.

As for the years off my life, well I guess that remains to be seen.  Jay's grown up and so has the Ranch, and it seems to be a match.

Wednesday, December 7, 2011

The tummy bug hits the Ranch

The phone rang at 2:30 AM Monday morning.  I was deep in sleep, buried under our down comforter.  Outside it was cold and wet and very, very dark.

It was Ashley, RA of Martha House. 

"Kelly's throwing up and feeling awful," she said, "She a really sick little puppy."  I said I'd be right over.

Well, I would if I could figure out who I was and where I was, which I did after a few minutes.  I even got it together to find the key to the Pavilion pantry to search for the key to the infirmary to search for medications likely to help a very upset tummy.

Clutching them I arrived at Martha House.  My poor girl was doubled up over the trash can and other things were happening as well.  Poor Ashley definitely needed help.

Kelly's main concern was being well enough to go to Wal-Mart that afternoon, a hope I had to dash.

Over the next three hours we coped.  Kelly liked the warm shower and didn't want to get out but eventually had to because suddenly it wasn't warm any more.  I changed her sheets and bundled her into bed.

Between spells of sickness Kelly dozed and we cleaned up messes and disinfected.  Then Ashley heard Kristen in her bathroom and another game was afoot...

"Food poisoning!" we cried!  The girls had gone to a church potluck on Sunday, and it was now about 12 hours later.

Later that morning, I came home and made some of Mom's Chicken Soup, which will strengthen or cure anybody of  anything, especially if it's your mom's chicken soup.  Kelly kept it down and asked for more.

At least Rebekah and Alaina were ok, but uh-oh, Alaina came down with it yesterday afternoon.  Fortunately her mommy lives close by, too. 

In the morning we asked Annette, who had been at the same potluck, what the girls had eaten.  "Wasn't the potluck," she said.  "We ate the same thing and I'm fine.  But now I'm thinking about all those hugs..."

Poor Ashley slept most of Monday, as did her girls.  Kimberly spent the day tending the sick, and for now the campus seems free of the icks.

Annette came down with the crud Monday afternoon, so there was no Wal-Mart for anybody. 

We finally decided it was a "cruise-ship" virus, because we discovered other people in other houses had had it the week before.  The Centers for Disease Control report that one in 15 Americans suffers each year from these "noroviruses."

So now it's a call to EcoLab to install the hand sanitizers that have become ubiquitous on the ships, at buffet-type restaurants, and even at the entrance to churches.

It's not always fun at Down Home Ranch!

Sunday, December 4, 2011

Kevin Patrick Tracy, 1949-2011

Kevin Patrick Tracy was born January 14, 1949 in Freeport, IL.  His father's first cousin was the famed actor Spencer Tracy who was an enduring and caring presence in the family’s life.

Kevin died December 1, 2011, following a grueling four-month battle for his life. His sister Colleen fought right along beside him through it all.

I first met Kevin when he worked at the ARC of Texas, coordinating the Advocates Program for adults with mental disabilities served by the ARC.  Kevin organized conferences and trainings statewide, published a newsletter that went out to people with intellectual disabilities all over the state, and was widely recognized for his dedication to his work.

Jerry was working under the auspices of the ARC in the early 90s, administering a grant project and got to know Kevin as a colleague.

The day before Thanksgiving of ‘92, as Jerry was closing his office to come home for the four-day break, he asked Kevin casually what his plans were for Thanksgiving. Kevin said he figured he’d pick up something at the grocery store and watch the games on TV. Jerry insisted he join us in our little mobile home at the Ranch (actually at that point it was the Ranch.)

Kevin showed up a few hours before dinner, thoughtful gift in hand. I made sure he had a nice take-away meal from the leftovers and he left before the sun went down.

He returned for Christmas, and Easter, and then we all began to say, “Kevin, we can’t eat turkey without you.”

Kevin evidenced a baffling disability at an early age, serious enough that he was placed in St. Colletta’s School for Exceptional Children, which is where Rosemary Kennedy lived, and one of the most respected options for children and young adults with intellectual disabilities at the time. Cousin Spence was instrumental in making this happen.

As for the nature of the disability, I myself quickly diagnosed Asperger’s syndrome, or what we nowadays refer to as high-functioning autism, or autism spectrum.

Whatever, Kevin was far more than a diagnosis.  He was bright, verbal, and read novels, biographies and histories avidly. For reasons we never quite figured out, he was a great fan of the British royal family, and could do a deadpan imitation of Elizabeth II that was “spot on,” as they say.

In fact, since we had no family in common, the royal family became our own surrogate collection of wayward relatives, about whom we gossiped and clucked all during the 90s, as the House of Windsor provided endless fodder.  I recall that Kevin loved to quote QE II's summation of one year as her annus horribilus.

After leaving St. Coletta’s, Kevin relocated to Arizona where he took a position running the state Advocates program. From there he came to Austin and continued his work.

During our holidays we were occasionally joined by “The Fair Colleen,” Kevin’s sister, who lives in Florida, and our circle was expanded. This was especially comforting in the odd years of Christmas, when our daughters and families spend Christmas with their in-laws.

Once while working for the Texas ARC, Kevin and Jerry attended a conference in Buffalo, New York. After hours they were driving around and discovered that a the presentation of Handel’s Messiah would be performed that evening at the cathedral, featuring boy sopranos from King’s College, Oxford, which they attended and talked about for weeks to come.

Kevin’s love for the Catholic Church was profound and genuine and when Jerry converted to Catholicism in the mid-90s Kevin became his sponsor.  He faithfully showed up for the weekly “scrutinies” and proudly stood with his hand on Jerry's shoulder as he was received into the Church.  Likewise Kevin stood as witness as we were married in the church some weeks later.

Kevin rather unkindly contrasted his church’s choir (St. Louis, Austin) with our own little effort, which I headed up as best I could (Sacred Heart, Elgin). He was very proud of his church, and happy when we made it ours as well.

In due time, Kevin decided to leave the ARC, and went to work for Travis County MHMR. Unfortunately, the work climate there was quite different from the supportive environment of the ARC.

Kevin had been long plagued with asthma, complicated by stress and anxiety, which he endured in abundance while working at the agency, and he suffered financial set-backs during this time which didn’t help. Finally, he left his position there for health reasons.

In the years following, Kevin's life became fraught with financial uncertainty and employment difficulties.  We and other old friends tried to help out, but the situation was tricky. Kevin was his own man, and our advice was neither entirely welcome nor often heeded. His physical difficulties by now included diabetes. A crushing blow came when he lost his house and he and housemate Bobby had to move to an apartment.

It was always apparent that Kevin’s disability played a part in his difficulties in life, but it was less often easy to see exactly how.  Yes, he was taken advantage of in ways that Jerry and I would have seen coming a mile away. There was a lack of guile in him that made it hard for him to believe that someone seemingly wanting to befriend him could have less than noble intentions.

The last few times we invited Kevin to a holiday dinner, he failed to come. He was working at Wal-Mart by this time, and sometimes scheduled to work on the holiday in question.  Other times he physically was just not up to it.

Early last August I got a call.

“I’m in the hospital,” he croaked.

“How come you didn’t tell me!?” I asked him.

“I’m telling you now,” he said.

Next day I went to see him, and was horrified. He couldn’t talk, looked dreadful, and had no patience with my usual joking inquiries about the royal family (though he did agree to take The King’s Speech DVD I’d brought).

I asked him if he wanted me to pray, and he nodded yes. I recited the 23rd Psalm, always a comfort to me, and prayed for his recovery. He squeezed my hand.

Still, I went home and told Jerry, “He’s not going to make it.”

Within hours Kevin was taken to ICU, in septic shock. Colleen arrived from Florida. From that time on it has been an unending trial. First his kidneys failed, then he had to go on a ventilator. By the third septic shock he had lost the use of his arms and legs.

If I could wish these past four months away, especially considering it all ended in Kevin’s death anyway, I have to think carefully about whether I really would.

Yes, he suffered so. Why couldn’t he have gone quickly?  But there is more to the story than that.

For one thing, I witnessed a sister’s love so deep and unshakeable it fair took my breath away. Day after day, Colleen was there for Kevin, immersed in the daily detail of his incredible struggle to live.

Colleen and I have become close, as she has become close to other friends of Kevin. She has gotten to know her brother better through the friends he has left behind, and we have been privileged to join her for part of this hard journey.

I’m never comfortable attributing the way things work out to any plan of God. I rather share Woody Allen’s feeling that if I don’t know how the can opener works, what can I know about God?

Still, we have our marching orders.  Thy kingdom come, thy will be done.

I think most of us who knew Kevin probably feel we didn’t do enough for him. In many ways, he was a better friend to us than we turned out being to him.  Now we best honor his life by caring for those he cared for.

One of the things Kevin taught me is that we are happier once we simply accept what others have to give and we relinquish our expectations or demands that they provide us what we want.

So we gather our memories together, and remember Kevin as he was in all his life, not just the hard last months. He lived his life on this earth, and we walked a while with him on the journey.

Now his journey has ended, and we happily find new people on our path, so we join hands and, in the words of King George VI of England, “Keep calm, and carry on” until such time comes, as it will, when our own journeys end.

Kevin would surely approve.