Wednesday, February 27, 2013

Back in the Day

We’re now in our 22nd year of living on Down Home Ranch.  Jerry, Kelly and I moved here into a small two-bedroom mobile home we dubbed “The Mustard Seed” September 9, 1991, having sold our home, and cashed out our retirement.

Looking back, I would give those three pioneers about one chance in a thousand to actually see their vision come into being as it stands today.  We didn’t really know what we were supposed to do, much less how to do it.

Each evening we would stand on our little porch, hold hands, and sing the Phos Hilaron, an ancient hymn sung as the sun goes down.  Like as not, we wouldn’t have seen the sun all day, as it rained that entire fall.  Well, maybe it didn’t, but that’s when I learned about El Nino, and what it can do to Texas weather.

Jerry would go off to Austin to work, and I would take Kelly to school, and then I would sit in the tiny office Jerry had built onto the side of the mobile home, which I had ingloriously named “The Wart,” stare at our Mactintosh computer, and wonder what to do next.

There were buildings to be built, land to be cleared, programs to be implemented, enterprises to be created, clients to be served…the list was endless, and we started at the very most basic level: We asked St.David’s Episcopal Church in Austin for money to put in a septic system.

Graciously, the money was supplied, the system installed, and for years thereafter I told anyone connected with St. David’s, “Each time we flush, we bless St. David’s!”  At least I did until Jerry said he thought I’d shared enough.

We had a plan.  How we built the Ranch conformed to the plan to build it only in the sense that what we envisioned now surrounds us.  It was like we planned to drive to LA and mapped it all out, and got to LA but looking back saw that we’d gone by way of Seattle.  That’s why it’s hard when people want our “recipe” for doing something similar.  We can tell you what we did, but it won’t be that way for you.  An organization is like a human being.  It has its own mysterious provenance, and its own unique DNA.  There will never be another like it.

Back in the day, we didn’t admit it to each other, but we were sometimes terrified that we’d put our marriage and our child in a situation that would bring us all to rack and ruin.  That’s why we were brought so close to God in those days, and sang the Phos Hilaron each evening, which in turn may be why the Ranch stands today.

We have changed.  Back then, we were barely into our 50s, and now we are in our 70s.  I look back and marvel at all the energy, and hope, work and vision we not only brought to the building of Down Home Ranch, but were able to convince others to bring also.  I have said it many times, but it bears repeating: The greatest thing about building the Ranch has been to witness so many people coming forward offering the best of who they are, and of what they have, so that others may have a better life.

Soon we will begin construction on our Chapel of the Good Shepherd.  Some might say it is long overdue, but I say it’s exactly the right time.  In short order, I plan to become like Anna, spending my days in the temple and helping create a sanctuary for our community and for those who love and support us.
And I definitely plan to teach the Phos Hilaron to any and all who will sing it with me as the sun goes down.

Image Anna and the Christ Child, Pinterest

Note of appreciation: thanks to all who expressed concern for Kelly's recent trials.  The various therapies are beginning to pay off, and she is more comfortable in mind, body, and spirit these days.  Thank you for your prayers and healing thoughts.

Wednesday, February 20, 2013

Memento mori

Life's hardest lesson seems to be that we must always be struggling against our own limitations--emotional, physical, intellectual, financial, spiritual.
I can accept that I must struggle with that, but it's so unfair that Kelly should have to, so now I find myself crying like a four year old "That's not fair!"
Two and a half months ago Kelly got a cavity that began to hurt.  Since people with Down syndrome don't perceive pain as quickly as we do, by the time she did notice it had bcome quite painful. 
We got it taken care of in short order, but then she developed a mouth ulcer, probably from biting her cheek while still numb from the dental procedure.  She began to chew on the other side of her mouth while we treated the painful mouth ulcer, which took two weeks to heal.
After the mouth ulcer healed, she began to complain of "another one" low down inside her cheek.  We could see nothing but "treated."  When she continued to complain after a few weeks we took her to the doctor.  He said nothing was wrong.
The next week she was in such distress I took her to the ER and they thought she had a tooth abcess and prescribed antibiotics and Oxycontin for pain.  No better, not even the pain. 
We went to the dentist who said she had TMJ disorder, probably from stress over my condition (I am undergoing chemotherapy for ovarian cancer) and other issues going on in her life, and to use hot packs and Tylenol for pain relief. 
Next we went to her oral surgeon. He recommended physical therapy, and we are now in our fourth week of that.  It has helped more than anything, but still she suffers.
Most recently she began complaining of joint pain all over and developed some other bizarre symptoms.  I immediately thought "autoimmune" and had Casey follow up with lab tests, which showed nothing much.
Yesterday she got day and night guards to protect against clenching and grinding.
When the pain is intense she cries and asks me, "When will the old me be back again?" and "Why won't God heal me?"  And she can't comprehend that I really don't know these things, so I can't make any promises.  This breaks my heart.

When my first daughter was born and the "bonding" hit big I was overcome by this sense that I would never be truly free again in my life, and my life was barely started (I had just turned 18). This was in 1960 and WW II was only 15 years behind us.  The stories of what people are capable of doing were fresh in my mind.   My Jewish grandfather's entire Polish family had been wiped out.
We lived under "the bomb" in a way people can't imagine today.   Public buildings were labelled with large signs depicting the univeral radiation symbol and the words Fallout Shelter. 
So any illusions that I could protect this baby were just that. 
Still, I knew if a Bengal tiger came into that hospital room right then I would take it on in a flash. For that matter, I know that I still would.

Drs. Chicoine and McGuire stated at a workshop that there's empirical evidence that parents of disabled children live longer than parents with typical children.  I've heard parents say, "We can never die!" in anguish over their inability to secure, absolutely secure, their children's future happiness.

In medieval and renaissance times, the artists often placed a memento mori in their paintings, a reminder that the viewer will someday die.  (One wonders why in those times, with short life spans, plagues, wars and infectious disease unchecked, they felt this necessary!)
Jerry was 46 and I was 42 when Kelly was born.  The first thing we confronted after her diagnosis with Down syndrome was the thought: Oh my God, when we are 70 and 66, she will not be graduating from Plan II at UT.  She will still need so much help.  She will still need us.
I think the Ranch, in a sense, is a memento mori and we parents have put our beloved children into its hands to keep them safe against that day.  Last fall two of our Ranchers lost their dads, and this had a huge impact on many of the Ranchers, including Kelly.  Right during that time I was diagnosed with cancer, and Kelly has watched endless movies of people with cancer and generally they don't make it.
I try to explain that they don't make movies about people who get cancer, get treatment, and get on with their lives. I try to comfort her in her distress. 
I do what I can, but I can't slay this tiger, and it's a heartbreak.

Tuesday, February 12, 2013

Deep water

Sunday the gospel was about Jesus instructing the disciples to put out to the deep water to catch fish.  Simon protested, "We already tried that and it didn't work,"--the phrase that kills all dreams from catching fish to building ranches--but then recovered and said in essence, "But if you say so, we'll give it another go."

The rest is history: loads of fish, so many other boats had to be called in to help out.  They had to put out to where the fish were to catch them.

But the point of this story isn't the fish, according to Fr. Larry.  The point is Simon's obedience to Jesus' intructions, after which Jesus tells the guys they are to become "fishers of men." 

The lesson applies to any great undertaking, at the outset of which three things are required:: 1)  You must go into the deep waters, 2) You trust that God knows better than you and when He tells you to do something, do it, no matter how cockamamie it sounds, yes, even if you've "already tried that and it didn't work," and 3)  You must expect to "catch fish."

 "Jesus can liberate us from the bondage of our certainties," said Fr. Larry.  Twice. 

It's been a while since I posted.  I lapsed into a funk in mid-January and started muttering things like, "The first days after diagnosis, with the surgery and the path reports and the marshalling of friends and family--that was the invasion of Normandy, but I have a feeling from here on out it's trench warfare."  The weather was cold and dank, day after day, which didn't help. 

Go into deep water.

I was spending a fair amount of time riding my pity pot when I went to pray a little over a week ago, pretty much stripped of any illusions and brave talk of my "vision quest with cancer." I realized in fact that I was approaching God like a two-year-old about to have a tantrum. 

"I feel rotten!  I don't like the weather!  Nobody understands what I'm going through!  Make me feel better!  Now!  Waaaaaa!"

Trust God.

Actually, I was embarrassed.  I was supposed to be praising God, thanking Him for my considerable blessings, and commending others into His care, and here I was all eaten up with the gimmees.  And God did an amazing thing.

"Yes," He said.  "Exactly right.  Come to me like a child, like a little child, who expects Me to listen, to understand, and to heal."  (He didn't say anything about the weather.) 

Who trusts more than a toddler reaching his little arms up for Daddy to enfold him?

Expect to catch fish.

As I prayed, I suddenly remembered a book a good friend got me at the outset of my illness.  The title is The Anti-Cancer Diet by David Servan-Schreiber, an M.D., psychiatrist, cancer patient, and researcher.  I found it and started reading.

The first half of the book is on nutrition and how to maximize your body's disease-fighting capacity and ability.  It is scientifically sound, doesn't make outrageous promises, and seems reasonable, so I took notes and resolved to implement his suggestions and double up on my efforts to eat well.

But the second half was the kicker, and the main message I needed to hear.  It's on meditation and learning the live--really live--your life.  With cancer, without cancer, healed, dying, and everything in between.  A lot of it is about breathing and the importance of it.

Sound stupid?  It's not.  My anxiety causes me to hunker down and literally hold my breath.  I don't realize I'm doing it.  My blood pressure soars, I feel panicky, I don't read my body's simple request for oxygen.

The ghastly truth is that I know the importance of meditation, or centering prayer.  I know its frustrations (suddenly finding myself creating grocery lists five minutes after beginning...) and its joys (truly life-enriching).

I just don't do it.

Later that day I was playing with my little dog Jenny.  She loves to select a stuffed animal toy from her basket and we wrestle over it and she runs around the house going "cracker dog."  Suddenly she spied a large rib bone she'd found on a walk and especially treasures.  She picked it up and the game stopped.  I tossed "evil raccoon" at her and she clearly wanted to play, but she didn't want to put the bone down.

As I watched her grapple with this puzzling dilemma I thought, This is a teaching moment, and the lesson is that to pick up something new, you've got to let go of something.

And what I need to let go of--yet again--is my insistence that I can't experience joy until everything is just right.  I had fallen into that trap: I'll be happy when this is over.  I'll do this or that when this is over. 

This may never be over, and life can only be lived in the moment or not at all.

Thanks be to God.