Happy New Year

Happy 2011.  This is the year that I turn 60 and I have three grandchildren.  I think that endows me with certain inalienable rights among which are the right to rebel against certain absurdities.  Why we do things is sometimes more important than what we do.

For example, there was this young priest who took over his first parish in northern Minnesota - or maybe it was Saskatchewan.  After he celebrated his first Christmas Eve Midnight Vigil, he noticed a certain growing resentment on the part of his rural parishioners.  So he went to his deacon and asked him what the trouble was.  

"Well frankly, Father, many of us are having trouble getting used to your new ways.  We aren't used to these shorter rites."  The priest asked him to explain further and the deacon explained, "Well, many of us missed the way the old priest used to bless the church at midnight during the Christmas Eve Vigil." 

Bless the church?  The young priest had never heard of this, so he went to to see the old priest in the retirement community which was now his home.  After an hour or so of discussing various parishioners, their children and cattle, the old priest asked, "And how are you settling in, young man?"  This was the opening he had been waiting for and the young priest asked for an explanation of the rite of blessing the church during the Christmas Eve Vigil.

After staring at him blankly a few moments, a smile dawned on the wrinkled old face.  "That old church is so cold and drafty!" He explained.  "Even in mid-summer I got cold.  But Christmas Vigil was the worst!  So before I began to celebrate Eucharist, I used to go over to the radiator and warm my hands!"

Or there were three generations of women who passed on family traditions faithfully.  As each one got older, her daughter would take over the task of preparing the Christmas Dinner for the extended family.  Each mother carefully taught her daughter all the family secret recipes.  As the youngest daughter was being inducted into the mysteries, she was told, among other things, that it was important to cut off the end of the Christmas Ham before putting it in the oven.  "Why?" she asked, bringing the proceedings to a screeching halt.

"Because you'll ruin it if you don't." Said her mother.  "Isn't that right, mom?"  


"I don't know," replied the grandmother, "That's just the way it's done."


"But why?" asked the rebellious daughter.  "Let's go ask Great-grandmother."  So they went out into the living room where Great-grandmother sat in state, knitting, of course, and asked her why it was so important to cut off the end of the Christmas ham.

"Because" she told them, "my old wood burning stove was so small the whole ham didn't fit in."

So back to being almost 60.  I'm old enough to start asking why and stop worrying about the "Right way."  Well, maybe I've always been a little that way, but I'm going to be a lot MORE that way from now on.  

Beginning with knitting.  Why do we pull from the center?  It's a neat little magic trick that goes wrong about as often as it goes right.  But why do we do it? I just spent 40 minutes trying to find an end that didn't come out of the center smoothly.  I'm done.  The only reasonable reason I can think of for pulling from the center is if I'm knitting with a double strand and only have one ball.  Otherwise, I'm knitting from the outside from now on.  


If I want magic, I'll buy a Fushigi.


 

All Right

Yesterday Charley was in so much pain he took 2 narcotic pills (maximum dose) and he was bleeding rather profusely outside his catheter.  He can't control it, so I've got blood drops all over the floor.  There was such a quantity of blood and pain that the nurse advised us to go to the ER.  Barb H generously agreed to come over and sit with Sam while we went.  She not only sat with Sam, she gave him his treatments twice, fed him, and came up with some good ideas for taking care of him.  Oh and washed dishes.  What a rare and wonderful person she is!

Anyway, as we drove to the hospital, Charley knelt in the back seat, rocking to control the pain and singing "He's A Ridiculous Man".  He sounds a little bit like Bono!  That was a moment to remember.  I was driving, trying not to have an accident or hit too many potholes, and listening to my poor, pain filled spouse sing amazingly well.  I could live in that moment, unwrapping it, for a long time!

Turns out that his catheter was clogged, and he's having bladder spasms.  Neither situation is really very serious, it's just that we've never dealt with this situation before and we over react, apparently.  Once again, we see the difference between the medical point of view and the experience of the patient!!!!  They think everything is going well and we think this is one incredibly bad experience!

Well-wishers keep telling me "It's going to be all right."  What does that mean exactly?  When is it going to be all right?  What is this "it" that's going to be all right?

Actually, my past holds lots of moments.  They fall into many categories like absolutely wonderful, pretty shockingly awful, sad, painful, joyful, funny and all right.  I'm pretty certain my future holds a similar list of moments.

In fact, today, this moment, "It's" all of the above.  Most moments are.  I think that's why people recommend we learn to "live in the moment".  This moment is so complex that, if I focus on it with all I've got, I still won't realize all of it before it's over and the next moment begins.  This moment holds the whole world.  And that is riches enough for anyone.

Caregiving

I'm running an ICU here.  I've been neglecting Sam while I take care of Charley and Sam is in not so good shape.   Charley continues to be in pretty bad shape and I've got blood and urine soaked rags everywhere.  He's like a new puppy - dripping bloody urine all over the floors.  Thank goodness we have all hardwood floors!  I have to add that I'm so very grateful for the support I'm getting.  The surgeon's nurse has a direct line and is very nice about talking to me whenever we're worried about something and the guys I get Sam's allergy supplies from have spent a lot of time on the phone giving me advice about keeping this place sanitized and disinfected.  (Aller-Caire The Allergy Store 1-800-547-8095)

Last night I was in tears because it took me 25 hours to get Charley's pain medicine prescription filled - problem after problem, long story - and then he didn't want to take it.  So I got him some ibuprofen and he took some baby aspirin.  And the nurse said both of those were wrong - they thin his blood and he won't heal.  So I had to go back to the pharmacy and get acetaminophen.  Charley said, "You aren't taking care of yourself.  You have to take better care of yourself."  So I skipped Sam's last breathing routine and went to bed. 

This morning Charley was mad at me because Sam had a bad night and because he had a LOT of blood everywhere.  It reminded me of something - I kept trying to remember what.  Then I finally remembered.  He reminds me of ME - when I was in labor!!!!  Cranky, scared and easily confused.  Actually he kind of goes back and forth between sort of labor pains and really bad menstrual cramps.  So I got him some of those pads that you put on your belly and they warm up.  This morning the nurse said the blood is from the aspirin yesterday and he should "TAKE THE NARCOTIC."  If he doesn't maybe I will!

But today's a new day and I did get a good night's sleep.  I just have to stay calm and do absolutely NOTHING extra.  (Well, except knit.)  Everyone keeps saying, "I don't know how you do it."  Well, I don't do it very well.   I do it pretty much the way anyone else would do it.  I just do what I can and then hope no one dies.

The catheter comes out next Thursday and then we'll see how incontinent Charley is.  I haven't reminded him that he will continue to be incontinent AFTER they remove the catheter - I don't think he could stand to hear that now.  But it WILL get better as time goes by...

Prostate Surgery

The really important thing to understand, when you are offered DaVinci Prostate surgery, is that when they talk about how simple and easy and almost fun it is - they are talking about the SURGEON'S experience.  THEY have a great time.  Doing this surgery is more fun (for them) than playing Donkey Kong.  What the DON'T tell you is that they blow your stomach up with CO2 so they can see your insides better and THEN they paralyze your bowels so you can't get rid of it.  Recovery is really, really painful.  Then (while your manly man iswhimpering in pain) they tell you that the catheter they have already put inside you will cause bladder cramps which may be mild or excruciating.  "Just expect that".  (Query: Will Midol help?  I went out and purchased some of those menstrual cramp pads that warm up.  Bladder is in the same region as the uterus, maybe the same stuff I used for menstrual cramps will help.  I tried getting him to do childbirth breathing when the pain was really intense, but he couldn't focus.)

  
I brought Charley home late last night.  He was very nervous about coming home.  The pain has been so intense that, if a CIA operative had walked into the room, he would have gladly confessed to killing Lincoln, Kennedy, MLK AND Lennon.

The down side is that this at-home "hospital ward" has no shifts and only one nurse - me.  The upside is that I don't get distracted and I give pain meds on time.  (When I got to the hospital last night at 7:30, I asked around and discovered the last time he'd had meds was 11 am - he was very fretful and not thinking straight because of the pain.)  So Charley is doing much better at home because I'm making him take his pain meds and stool softeners.   Except for bullying him regarding meds, I'm letting him do whatever he feels like doing.  He is going up and down stairs to get what he wants, managing his own catheter and getting himself dressed.  He is also finding out what things hurt and what things he can do.  Sam is better, too.   He didn't get enough treatments the last two days because I was running to and from the hospital and he didn't really like having his parents missing. Those two ladies were not great substitutes as far as he was concerned.  (Personally, I think they were close relatives of angels.)  They kept watching the WRONG shows on HIS tv.  He was polite and charming to them, but once they left he let me know that he wasn't very happy.  A mother's place is in the home, waiting on him. 

So I'm actually doing ok, too.  It is too cold to go outside anyway and we're just focused on healing and knitting.  It was absolutely great to have him home again and I slept really well.  It's cozy and intimate and we're all three really aware of how important we are to each other.

I'm going to put in a PeaPod order later today, so we're okay food wise.  So really we need prayers and peace.  You could add my hearing aides to your prayer list: I have lost them (They HAVE to be here in the house someplace, I just got distracted) And praise: yesterday I hit a really big pot hole which blew out my tire and bent the rim, but I'm okay and I'm driving Charley's car until we can focus on fixing that.  I hit the pot hole right next to a shell gas station and they patched it up enough for me to get home.  There are TWO tire places in our alley! So I will be able to get it fixed without driving it again!

I didn't manage to get all the Christmas presents in the mail yet, but the last few are all boxed up and I'll get to it asap.

Parenting a Child with Cognitive Issues

I was just watching part of a movie called "A Child is Waiting".  I didn't see much of it because my child was waiting for me to change the channel.  But I did hear this angry parent instructing his autistic child's caregiver to "just give him everything he wants and make him happy" because he is has a cognitive level of a five year old.

I just have a few things to say about that attitude.

First of all, if your child has the cognitive level of a five year old, I envy you.  You can talk to your child and get an answer.

But seriously, if your child is "stuck" at 5 years old that means that he or she is going to be 5 for a very, very long time.  So you probably want to look into what are the best parenting techniques for a 5 year old.  As far as I know, "giving them everything they want" is light years removed from "making them happy"!  Practically no one enjoys being around an over-indulged 5 year old!  An over-indulged 5 year old in the body of a 50 year old is a big problem.

5 year olds need boundaries, security and new challenges.  They need to know that they can make mistakes and someone will still think they are terrific.  They need to know how to obey and cooperate and help to feel important.

But really, people with cognitive disabilities are never "stuck" at any age.  That's just someone's short hand method of describing a person's limitations.  Who wants to be described by their limitations?  Raise your hands.  What? No one?

I thought not.

People continue to change throughout their lives.  It's nice if there's somebody around to notice.  Sam, for example, has the "cognitive level of an 18 month old" whatever that means. But he has been at that level for about 28 years.  In that time there have been so many changes and delightful discoveries.  He has met and loved so many people and grieved their loss.  He has been depressed and elated and everything in between.  He is curious about everything and loves to investigate.  He is a precious valued member of whatever community he enters.  And he needs me to take care of and challenge him.

I need him.  I think everyone needs to be needed and Sam thrives in an environment where he knows he is needed.  He is part of a family and he is part of a community and he is wise and funny and precious.

Which brings me to what the caregiver in the movie said in response.  "The child does not know he is a tragedy.  Maybe the tragedy is in you."  Some people with cognitive disabilities are smart enough to know they are not like "other" people, but that doesn't mean they are tragedies.  "Normal" is kind of a myth anyway.  We are so much more than what we know.  Getting an advanced degree in college and a high paying job are not guarantees of a happy life.

Tragedy is a society that has upside down values.  We should celebrate the people we love and delight in discovering their unique abilities.  That doesn't mean life will be easy.  Most lives are not.  That's something we can call "normal".

Veteran's Day, 2010

My father, Charles A Repenning - World Famous Paleontologist and WWII Hero - (at least according to the Denver Post) requested in his will that he be cremated and suggested that his ashes be either thrown off the California Coast to sift down among his beloved Elephant Seals or encased in plastic key chains and sold as souvenirs at the Society of Vertebrate Paleontology's annual meeting.  He suggested that this latter method was probably the only way we, his offspring, were going to make any money off his demise.

Knowing how opinionated, controversial and downright cranky the old guy was, I have my doubts as to how much money his remains would net us even if the key chains were gold plated.

The former idea, however, has a lot of merit.  The elephant seals that come ashore on California's beaches are extremely crabby beasts.  Off shore there is a party going on that is the elephant seal version of Spring Break on Florida beaches.  The guys who come ashore are the ones who can't find a partner in the mating game.  Dumping his mortal remains out among a bunch of sex-starved, grumpy males just seems so right. They were kindred spirits, so to speak.  I could add details, but won't.

However, 5 1/2 years after his murder, his ashes are still in my Chicago garage.  I haven't been able to arrange or afford a trip to California to dump him.

This morning we woke to discover that Veteran's Day was going to be beautiful.  Warm, sunny and fall colors everywhere.  It just doesn't get better.  And Charley wanted to get out into nature, but had an errand to do in Oak Park.  I suddenly remembered that the park where my Dad spent his childhood was a couple blocks from the place Charley had to go.  Somehow it just seemed TIME.  So while Charley did his thing, Sam and I walked over to the park.  I've been there a couple of times in the last 5 years, thinking about Dad.  This park has a few animals in cages: a red fox, a coyote, some birds of prey.  It had the same animals, apparently, 70+ years ago when my Dad was riding his bike to this park.  This is where he learned to love nature and rocks.  He and his best friend spent every spare moment in this place getting really dirty and I think it is still pretty much like it was then.  Sam and I walked around a bit and then we found a pretty remote place beside a fallen tree.

I opened the urn I had purchased for Dad and poured out his ashes.  The urn is made of a single piece of agate.  I figured, while waiting to get thrown off a cliff, he'd be happier encased in a rock like that than in the plastic box the funeral home put him in.  I had forgotten, but I also had put in a fossil mouse jaw and some of his dog's hair.  I poked those in among his ashes.  We sat there in the sunshine a little bit and thought about Dad as a little boy - full of wonder and curiosity.  Dad had come a full circle back to innocence, back to the place where he was happy before the war, before disillusionment and disappointment and bitterness.  Instead of letting him drift among rejected suitors, I laid him to rest in a place of possibility and wonder and I gave him fossils and dog hair.  He's with the places and things he loved most in the world.

 And I felt more peaceful than I have felt in 5 1/2 years.

Rest in peace, you old goat.  I love you.

Mid Term Elections

I'm not really sure of the origins of the myth that Republicans are more religious (spiritual) and less corrupt than Democrats.  Watergate.  Do I need to say more?  Because anyone who is paying attention knows that there are seedy, corrupt and irreligious people on either camp.  It's the nature of politics, I am afraid.  There are really good guys on both sides as well.  People are, in the final analysis, just people.

I'm in favor of ending corruption and I don't mind tax cuts, but my family and I belong to several "Special Interest Groups" and I'm afraid we have just become expendable.  People with disabilities, public school teachers, home healthcare workers and (Please God) we are about to become members of the "Special Interest Group" called Cancer Survivors - we are some of the people that make considerably less than President O'Bama's often referenced $250,000 a year cut off.  (I guess if you make more than $250K you are in the "wealthy" camp.)  We are the people who need affordable healthcare without pre-existing condition clauses or penalties and a roof over our heads and food on the table.

People don't become wealthy on merit.  They become wealthy because of luck.  For every "self-made" billionaire, there are about a billion others who work as hard, are just as smart and are teachers or musicians or factory workers.  On top of that, there is the added factor of class.  If you are born into a family that has wealth and it is assumed that you will go to college, you will probably wind up making more money than someone else whose family has different expectations.  That also has nothing to do with merit.  This has been true since Mark Twain wrote "Puddin' Head Wilson" and probably true since the feudal system gave way to the market-based economy.  I heard a guy on TV say that birth order has a lot to do with whether or not you succeed.  There are so MANY factors.  Very little of financial success has to do with personal merit.  This is why I believe wealth and privilege SHOULD also include responsibility.  Wealthy people owe a debt of gratitude to the culture that allowed them to become wealthy.

Well, I think everyone should feel gratitude and responsibility toward their community.

Illinois has one of the highest per capita incomes and one of the highest tax rates and yet we do not have enough money to support schools, fire fighters, police officers, bus drivers, etc.  We do not have enough money to give everyone with a disability aid.  It is handed out grudgingly by a kind of lottery system and mostly on an emergency basis.

A government which balances it's budget on the backs of the most helpless and the least funded has lost all credibility and can no longer claim to be "democratic" or "humane" or "of the people".  I didn't know how to vote this year.  The Republican agenda seems to be to cut back on services to people like us, so why would I vote for them?  And yet, the Democrats promise to fight for our needs, but seem to be impotent.

I'm not that confident that John Boehner and his other Republican politicians really hear my voice any more than the Democrats.  Do they know people like us even exist?