Back in the Day

We’re now in our 22^nd 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

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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.

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.

 

 

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.

Thank you St. Anthony

Yesterday I shared with a bunch of friends that I'd invoked a prayer to St. Anthony in desperation on a hunt for my eyeglasses, up against the clock ticking toward a not-to-be-missed medical appointment.

Obviously they were in the condo, but I'd searched everywhere I'd been, everywhere I hadn't been, even into closets I hadn't touched.  I knew I'd taken them off to take a shower; there were a limited number of places I could have put them.

I peered out into the dark, rainy morning.  I knew I'd be a hazard if I tried to drive without them.  Finally, I decided to give St. Anthony a try.

I'm a convert to Catholicism.  Many of the quirky prayers and beliefs associated with this faith-for-the-masses I scoffed at during my upbringing as a proper Episcopalian and haven't made much attempt to learn about them since joining the Church.  Still, I remembered a children's prayer I'd read somewhere (probably in a novel about somebody's Catholic childhood) so I chanted, feeling very silly indeed:

Tony, Tony, turn around!
Something's lost and must be found!

Then I shrugged my shoulders, said, Oh well, and walked into the bedroom.

Hmm, maybe they fell off the nighstand and under the bed?

I got to my knees and peered under the bed.  Oh, well, I muttered yet again, preparing myself to come up with Plan B and bracing myself against the bed frame and the nightstand on my knees to stand up.

And there were my glasses, right at eye level, lying on a coverlet whose pattern obscured them from my weak vision when viewed from above (because I had looked 50 times on the bed for them at least) but perfectly obvious when viewed from this angle.

Thank you St. Anthony! I whooped, put the glasses on my nose, the dog in her crate, and headed for my appointment.

To my amazement, upon opening my car door, there between the door and the driver's seat lay a set of keys I'd lost ten days ago.  A double whammy!

How does it work?  It does work!  I know it works! I marveled.

I think it's this: We are literally blinded by our own efforts and anxieties.  The minute we turn it over to a Higher Power, the blinkers are removed and we are given to see what we could not see just moments before.  Somehow we take that concern and set it aside, and...trust.

And though there are many long, adult, theologically puffed-up prayers to ask St. Anthony's assistance in finding lost items, I think I'll stick with the tried and true.

I seem to recall someone saying that we needed to approach our faith as a little child anyway,

Last week I wrote of Kelly's continuing problem with jaw pain.  I said that I was afraid my concern combined with my inability to do much (last week was chemo week; enough said) was causing confusion over her care.

I said as much to Casey and Cathy, and whether or not it was is a moot question now.  Jerry, I, and half the Ranch are frantic over her distress.

Kelly has always overridden and denied pain, which is not uncommon among people with intellectual disabilities.  She'll soldier on in silence to the point that it's only when something has become obvious and extreme that she will say anything at all.

At the same time she is somewhat phobic about medical procedures, which is another reason she denies anything is wrong.

Yet she is in such obvious distress that all of us at the Ranch are wringing our hands.

Kelly has been diagnosed with temporomandibular pain, which means her jaw(s) hurt.  We know the bottom one hurts.  We don't know about the top one.  She reports "It feels funny."

Does it ache? Throb? Is it numb? Are pains constant, intermittent, deep, stabbing? Are they 1,2,3,4,5,or 6 on the pain scale?  I have asked the questions every way I know and I get, "It feels funny.  I want it normal."

Well, normal we understand at least.

What has caused this?  The mouth ulcer that caused her to chew on that side for two weeks?  The Botox treatments that allow us to help her clean her gums in that area?

Yesterday Laura and I took Kelly to see the oral surgeon.  Fifth appointment in three weeks: two dental, one ER, and one medical, plus yesterday.

I must admit we're used to the quick fix.  Growing up, Kelly was as healthy as any of my kids, and healthier by far than the first two, who made careers out of ear infections and producing strep germs.  We're not used to long, protracted pain.

"I want it gone on the cruise," she wails, which starts January 24.  I finally had to tell her it doesn't look like that is going to happen.

Dr. Buchanan, Kelly's oral surgeon with whom we've worked for years, gave us a long list of probabilities on what is causing this, and what treatments might be effective.  He was generous with his time and gentle in his concern. I have complete faith in both him and Dr. White, Kelly's dentist.

General consensus: my cancer is causing Kelly's jaw pain.

In other words, knowing that I have a serious illness has overloaded her ability to ignore her distress, and it is coming out in clenched jaw muscles, tooth grinding, etc.
Dr. Buchanan advanced many possible theories as to cause, but hands down agrees with Kelly's dentist that there is most likely no organic cause of the disorder.

For now we will pursue a splint to help prevent night grinding, pain relief (against which even Vicodin seemed not to do much), massage therapy, and possibly physical therapy.

We're getting an assessment this morning at a PT practice that works with people with TMJ disorders, and are looking for counseling resources.  We will pursue any and everything that might offer relief.

Meanwhile I'm encouraging Kelly and staff to get back into the swing of work, exercise, and activity.  People on the Ranch who have struggled with this disorder report that it's a very hard pain to ignore. 

I hate it when we do all we can, and it isn't enough.  I hate for my child to hurt.  I want to slay the dragon and make her happy. 

For now, hugs.

Pain

Chemo III was yesterday. I felt great, checked out great by the lab and the doc, and reported to Spa Chemo with my friend Maria and settled in.  Fifteen minutes into the Taxol drip I started to go into shock. The team had things under control in seconds and after all was calm, resumed the drip at a lower rate, gave me a mild sedative, and I zonked for the rest of the day. We left the clinic at about 4:30 and I am none the worse for wear.

Meanwhile, my poor daughter Kelly has been going through her own very rough patch, and Mom has been very limited in her ability to help.  Still, it appears Mom's help may be causing more problems than solving them.

Several weeks ago, before Christmas, Kelly developed a mouth ulcer in her right cheek area. We treated it topically and assured her it would go away, but those things are painful and hang around a long time so it was very hard for her.

"When will I be back to normal," she would wail ten times a day and I could only offer vague assurances that it would go away in time.

As the ulcer faded she began to complain about "another one" somewhere in her left cheek area. Nobody could see a thing. We peered with flashlights and probed with fingers. We vainly kept up with salt water rinses and topical pain relievers, though we only guessed at where to swab them.

Kelly's complaints varied between crying, "It hurts," and "It feels different."
I figured out finally that "hurts" meant what acute pain, but different meant "ache." The more I peered into her mouth, the more I began to feel that the pain had something to do with an old crowned tooth that has caused problems before.

Off to the dentist, who said he thought she had pain from clenching her teeth. He did an x-ray and it looked all right. Still, the pain continued, and worsened, and anyway Kelly does not grind her teeth nor clench her jaw that I have seen.

Last Friday I had Nurse Debbie check her out and she said she believed the cheek was swollen, and pointed out that it was flushed and red. She probed the area around the crown and got a big reaction. She thought it might be an abcess. So off we went, along with Sterling for comfort and distraction, to the ER.

The young doctor there concurred with Nurse Debbie after examination, and prescribed an antibiotic and a pain reliever, along with a recommendation to visit the dentist again.

Kelly has now been living with serious pain for weeks. If she could describe the symptoms better we might have caught it early. The mouth ulcer preceding the current problem proved a false trail to follow--for Kelly pain is pain. The pain of a tooth abcess is pain and the pain of a mouth ulcer is pain.

We tried in vain to describe "throb" to her in the hospital. After listening a while she said "yes" but I could tell she had no idea what we were talking about. I don't know how I came to associate "throbbing pain" with the sensation it is. I have no idea how to describe it to my daughter who is in pain and only recognizes the word "hurt."

Another dental appointment this afternoon and then hopefully a referral to the oral surgeon. Kelly's big goal is to be "normal" by cruise time. I hope and pray it is long before that.

There's an old saying that a mother can only be as happy as her unhappiest child, and there's truth in that.

I can and do resolve to find at least one point of joy in every day, regardless of how I feel. I encourage Kelly to do the same, though I think the concept is lost on her. I hope she does find that joy.

I think my presence at the Ranch, weakened though it be, creates confusion in caring for my daughter, at a time when I am less able to fill that roll. After all, I, too, am peering into her mouth and making pronouncements as to what I do or don't see. And I'm the Mom. And I'm a Founder.

Could that make Ranch staff feel complacent that the problem is being addressed? Do they defer to me rather than using their own judgement about when a Rancher needs attention? I know that Jerry's and my presence is a complicating factor, but I don't know exactly why or in what ways.  It's a puzzle.

But lately, I know that my daughter is not a happy girl, and I am not a happy mom.

We'll use this experience to learn.

Life abundant, even with cancer

Martha took me in this morning. Jerry felt he needed to be there but I forced him to go play golf, wrenching his arm almost out of its socket.  I convinced him by reminding him how I cherish one on one time with my daughters, and if he came Martha would have to leave because Spa Chemo at Texas Oncology only allows one visitor at a time. 

Martha has amazing empathy: when the Benadryl kicked in through my IV line she immediately fell asleep, letting me know it was time for my nap! I was able to report to Jerry that Martha also proved to be a good urban food forager for lunch. So we did just fine.

Dr. Smith said I am in great shape but it's clear I'm one of those who will need a white cell booster shot after each chemo. She says it's common and nothing to worry about, just means I need to go back tomorrow for the injection, which has its own side effects. Personally I am so much stronger than when I went in for chemo I can't help but hope that the effects from the chemo will be much less than they were with the first one. 

But truth: you can't predict. Overall my arc was: Chemo, one great day (thank you steroids), two miserable days, one tired day (but able to go to see Lincoln and enjoy it), and then steadily feeling better and actually good at least part of each subsequent day. I got two white cell injections and had one bum day but otherwise the main symptom is fatigue, which sometimes comes on suddenly, maybe even right after I get up and have my coffee. Then I have to rest. Unpredictable.

That said, walks with Jenny have been a terrific boost, because she has had to go out at least six times a day and each outing is 10-15 minutes at a minimum at a fast clip. We have covered as much as 1.5 miles on a single outing, so it's a great way to build stamina. And oddly, I have yet to have to wave down a ride back to Benedict House during a walk with Jenny! Go figure.

Now I am going to embarrass Jerry.

I'm not surprised, as this is not the first medical crisis we have been through together, but I am amazed anew by his understanding, tenderness, concern and care for me. As I tap away, he is preparing a dinner of blackened salmon, wedge salad, Brussels sprouts, and gnocchi! He is my best buddy in the journey of life. 

We have settled into a wonderfully amiable stage of our relationship that endures through thick and thin, and we've had plenty of that along the way. We laugh often and loudly, we argue heatedly and unfairly, we get excited reading the same book and loving it.

John Paul II wrote beautifully, truthfully, and compassionately on the mystery of the gift of one's self in marriage--"self" encompassing body, mind, and soul. (Interestingly, those self-same elements with which we are bidden to love God.) 

We have learned much about forgiveness, not only of others but of ourselves on this journey. Not a week goes by in which the recitation of the general confession at Church does not apply in some way to us as a couple, but neither does a week go by in which First Corinthinians 13:4--8 does not equally apply.

We realized soon after we set out to build Down Home Ranch that there is a power that mystically arises out of the vows of a married couple and out of the reality of their union, whether those vows are to love one another even when you just don't feel the love, or to build something together--a family, a business, a Ranch for the fruit of that union and others like her.

"A cord with three strands will not be broken." Thank you God, for being the tie and that third cord that has bound us together for 40 years, even when we didn't really know you.  Thank you for allowing us to see our "children and our children's children standing tall and strong as young olive trees around our table," and to see the community of Down Home Ranch become what we first envisioned it to be.