Friday, December 27, 2013

A Christmas Miracle (very small one...)

Okay, folks, it's time to get blogging about the Ranch again.  Things are happening big time around here.

For example, we had a Christmas miracle all our own.

For weeks when Cathy has been tending the chickens at night, closing them up warm and cozy in their hutch, she has noticed that one is missing.  Still, when she counts them during the day they all would seem to be there.  Very strange.

On the other hand, they all share a distinct family resemblance, and they are very busy, so it is hard to count them.

But  on the morning after Christmas, the mystery was solved when Cathy found a mama hen and several tiny yellow chicks close to the giant Carolina jasmine bush nestled against the Learning Center. 

Amazingly, Mama had set on her clutch of eggs for many days and escaped the various varmints constantly on prowl--cats, possums, raccoons, and foxes--and hatched a dozen or so babies successfully.

We hustled them into an empty coop and Cathy made the dash to Tractor Supply in Taylor for a small waterer and feeder set, shavings, and some chicken chow where Mama can raise the babies in safety.  One little guy that was not doing too well was taken in hand (literally) by Ashley to tend in the warmth of her cabin.

Mama seems as proud of herself as we are of her.  The lady at the Tractor Supply told Cathy, "You take good care of that mama.  She's got the right instincts and a lot of them don't, 'cause they're just bred for egg production."

We promise.  We will.

And our little ones will join a whole host of others as they grow up.  The week before Christmas we took delivery on 100 young laying hens to stock our "chicken tractor," a mobile chicken house with nesting boxes that can be relocated at will into various areas of the Ranch, enabling the chickens to free range during the day and be safe at night.

But for now they're tucked away in their nursery, safe from harm.

And we are inexplicably totally delighted with our little Christmas miracle.

Monday, July 29, 2013

Racing the Clock

Me visiting with a young attendee at the NDSC
Jerry and I, three staff, and two Down Home Ranch Board members attended the National Down Syndrome Congress Conference (NDSC) in Denver in mid-June.  Jerry and I went up early to attend the Global Down Syndrome Foundation Round Table on current advances in Down syndrome research and treatment.

Wow!  What a difference a few years make!  Down syndrome has traditionally been a subject few were willing to tackle in terms of research.  The reasons are complex and varied.

First, there's the matter of an entire chromosome being involved, not a single gene, as in cystic fibrosis.  It has only been in the last decade or so that researchers have been willing to tackle such a complicated and daunting task.  Where to begin?

Second, people with Down syndrome occupy a discounted niche in society, and many are perfectly satisfied for the main "treatment" for it to be early prenatal detection and elimination.  Why bother?

So, even though there are huge numbers of people with Down syndrome growing up or living with the effects of it, the amount of money set aside to study it and remedy it is minuscule in comparison.

But this is changing, and the reason it is changing gives me chills and thrills of happiness.  It's because--all over the country--families and friends of people with Down syndrome really, really love their kids and decided to do something to ensure a longer, better life for them.
Two attendees having their own dance

Of course we've always loved our kids, but we weren't always organized in ways to let us do anything about it.  We were marginalized and isolated and, until relatively recently, advised to stick them in a state school and forget about them.

When our Kelly was born in 1984, though, things had started to change.  Our pediatrician was knowledgeable and did not paint the grim picture presented to most new parents.  She was upbeat and told us right off, "You're going to have a great time with this kid!'

By happy chance, the NDSC convention that year was in San Antonio and my daughter Martha and I attended it when Kelly was just a few weeks old.  There were about 300 people total in attendance.  This year, believe me, we soaked up pretty much all the meeting and hotel space available in downtown Denver and the estimate of attendees is around 3,000.
Jerry with Michelle Whitten, founder of the Sie Center

At the Linda Crnik Institute for Down Syndrome Research at the University of Colorado Medical School, we heard presentations on proposed and ongoing research designed to mitigate or erase the effects of what is believed to be only a few genes on the extra 21st chromosome borne by people with Down syndrome.  We also heard the "good news" about families with a child with Down syndrome, which is that they tend to be happier than other families, with a lower divorce rate.  (Makes sense: all those daily hugs!)

At the conference itself we attended a variety of workshops, splitting up to be able to cover as much territory as possible.  Our group consensus is that each and every one attended was well presented and worthwhile, quite a testament to the organizers. 

Judy, Gigi, and Carol at banquet
Another exciting development to emerge from the conference is that the NDSC has embarked on an aggressive campaign to provide the medical community that will counsel prospective parents who have received a diagnosis of Down syndrome in their baby with accurate information.  Generally to date 90% of the information given is dismal and most of it isn't even up-to-date scientifically.

There is no way to even touch on all the important things we learned, but I encourage you to follow up with the links to websites included in this blog and below:

Down Syndrome Research and Treatment Foundation
Down Syndrome Research Lab, University of Texas at Austin for research on Alzheimer's Disease
The Sie Center for Research

Thursday, July 4, 2013

Happy to be here

Volunteer Cacy Scott from Sunnybrook Christian Church of Stillwater, OK
I often correct people when they say Jerry and I "built" Down Home Ranch.  We're the Founders, but other people built it.

And I don't mean just the homes, the ponds, the greenhouses, the barns, and other structures.  I include the fences, the programs, and the organization.  They've done it every way from stacking chairs to digging postholes to trouble shooting technical glitches with our ever glitchy IT system.

Foundations gave us a lot of money to hire people to build these things, but volunteers enabled us to actually do it.  Over the past ten years alone we estimate that volunteers have contributed about 130,000 hours of love and labor.

Every now and then a closer relationship than usual develops with a group, as has been the case with Sunnybrook Christian Church of Stillwater, OK.  Rona Tracy, a church member blessed with a little one with Down syndrome, found the Ranch on the internet.  She got others interested and they decided to do a mission trip to the Ranch over spring break. We celebrated their fifth mission visit recently, and by now we all feel like family.

One special volunteer, though, has just a real special place in our hearts, and that's Cacy Scott, the lovely young girl pictured above kanoodling with Jenny (who loves to kanoodle!)

Cacy is 13, going into 8th grade at Pawnee Middle School in Pawnee this fall.  And she is a trouper.  She's here with her mom Rachel and siblings Wesley and Isabel helping out at Ranch Camp.

I first met Cacy when I walked into the Pavilion and was confronted with what seemed to be a face on the back of a head.  I quickly realized that the eyes, nose, and mouth were drawn there and that the two-faced little minx who talked a friend into the art work was quite a character.

At the age of two Cacy developed alopecia areata, a condition in which the body hair falls out, sometimes in patches, but often, as in Cacy's situation, completely.  Cacy's pate is egg-like in its smoothness, freckled and tanned by the summer sun.

I recently had my own bout with baldness and compared notes with Cacy on that matter.  Was she ever bullied at school?  Yes, but not because of being bald.  Did she get teased a lot?  Not really.  "All my friends are good with it," she says with a smile and a shrug.

I told her as long as I had on my wig over the course of my treatment, people told me I looked fabulous no matter how I was feeling, and so I had decided that people must judge other people's health largely on the basis of their hair.  She laughed. "Yeah," she said, "the hardest thing is people assume I have cancer and feel sorry for me.  One of the campers almost started crying."

Cacy loves the Ranch and comes whenever she gets a chance. She says she feels at home at the Ranch and with the Ranchers, because "They always remember me when I come back, and everything we did going back to the first time I came!"

Mom Rachel told me that Cacy is already lobbying to stay longer next summer.  I asked her what she'd done so far this summer and she said she was with the Blue Team for two weeks, assisting campers with activities and this week she's a floating CIT, which means she stacks a lot of chairs!

Cacy's plans definitely include going to college and studying to become a music therapist like her friend Robin Buford, who we agreed must be the world's most enthusiastic, charismatic, and entertaining music therapist.  (Needless to say she is a favorite with our Ranchers, too.)  After college will come marriage and a family, and travel in Italy.

But by now it was time to be off to blow up water balloons, help with line dancing, and stack some more chairs.

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...

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.

Wednesday, January 16, 2013

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 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.

Wednesday, January 9, 2013


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.