Sunday, December 19, 2010

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.

Thursday, December 16, 2010


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...

Wednesday, December 15, 2010

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.

Tuesday, November 16, 2010

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".

Thursday, November 11, 2010

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.

Thursday, November 04, 2010

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?

Wednesday, October 27, 2010

Prostate cancer is no big deal??

So Charley has CANCER.  What else can go wrong?

I should probably explain that this has all happened very fast.  

Charley got hepatitis in boot camp almost 40 years ago.  We've always been grateful that was ALL he got since they housed them in a barracks where several men died of meningitis and one of his friends subsequently died of that, too!  But hepatitis is managable.  It apparently lives on forever in the system and we get his liver checked every so often and his doctor worries about him.  We're not sure exactly WHY his doctor worries about him so much.  Once he came into the exam room and announced cheerfully to Charley that his brain tumor was benign!  When Charley told him that he wasn't aware that he HAD a tumor, the doctor looked embarrassed and left the room.  Only to return with a different chart!

But the hepatitis is real.  So the worried doc sent him to a liver specialist and a urologist this year.  Charley procrastinated because he doesn't take this doc very seriously (who would?).  But the urologist felt a lump in his prostate and wanted it checked out.  "It's probably nothing".  The urologist is a very cheerful chap.

So last week, Tuesday I think, we went together to get the biopsy and see the liver guy.  I went along partly because I was scared and partly because I didn't know if Charley would be able to drive home after a prostate biopsy!  The urologist said everything "looked great" but he would call by the end of the week with the lab results.  I thought that was kind of funny.  I think Charley's butt looks great, too.  But I've never has as close a look at it as the urologist...  So it's nice to have my opinion confirmed.  

The liver doc said that he couldn't figure out why we were in his office.  Charley's hepatitis has been dormant for around 40 years and it looks like all that is needed is a blood test every year and possibly an ultra sound to be sure that it is still dormant.  His regular doc can do that.  It doesn't look like his regular doc DID do that, so they took some blood and told us to go home and not worry.  The only caution is that he shouldn't take immuno-suppressants or cortisone or steroids because those would stimulate the hepatitis.  "So," he said several times, "You're okay unless you get cancer or something."  (Ominous music in the background)

So we went home feeling pretty good.  Then the cheerful urologist called us back Wednesday evening and said, "It's cancer.  But don't worry.  We'll take care of it.  Everything will be ok.  Can you come in tomorrow at 4?"
So the cancer, like the hepatitis, is fairly benign.  We could just go another 20 years or so before it really becomes a problem.  In fact, if he were 80 or so, they'd recommend just watching it.  They could leave it where it is and he'd most likely die of something else before the cancer grew enough to be a problem.  However, he is quite young to have this develop and it is still very localized - only about 10% of the tissue samples were cancerous.  So they recommend just removing the prostate and having that be the end of it.  He likes that idea.  I think having dormant cancer on top of dormant hepatitis is just one too many swords of Damocles hanging, you know?

So he's going to have the surgery sometime in mid-December.  That way he can stay home three weeks (Christmas vacation) without inconveniencing the school too much.  They are being audited again this year and the pressure on his department is pretty brutal.

He's seriously considering how the cancer impacts his retirement plans so, after the audit and after the surgery, he's going to look into that.  We're both eager to retire and move to Portland to be near our niece Heidi and hubby Noah.  Oh yeah! and our son Ben and DIL Cher and grandkids Tasha and Tahreq and Zora.  Not to mention other relatives in Seattle, WA and Santa Clara and Salinas, CA.  Portland is even closer to Denver, I think.  But we are not sure how soon we can afford it. 

They told him that the best way to prepare for and recover from surgery is playing his sax and clarinet.  So he's looking forward to that.

What I'm considering is how recovery from surgery is going to impact ME!  I get to spend my Christmas this year making soft foods and changing diapers for the two men in my life! 

Time to recovery so the he can go back to work: 3 - 6 weeks.  Full recovery of urinary functions (not to mention other intimate concerns) can take as long as 3 years!  There's even a remote chance he won't recover fully.  But he's having this robot surgery and the recovery rates are much better with that.  

Everyone says "Oh prostate cancer. No bid deal."  I'm thinking that it's no big deal to those who haven't HAD it!

On the Sam front, we have mostly given up on taking him to school.  The lung doctor has said that it is important for him to sleep when he feels like it and he has felt like sleeping from 4 am to 11 am his entire life.  So I've stopped trying to get him on a normal human schedule.  This means that we are going to another church now, it has a Saturday 5 pm mass and a Spred group.  And it means he mostly doesn't make it to school.  Maybe one day a month or so.  But even then it's mostly for about 2 hours.  On the other hand, his blood levels have remained fairly stable for the last 18 months.  This is due, according to the doctor, entirely to our care and letting him sleep is a major factor in that.

So now you know the news from what Dad used to call "The Hell Hole", Chicago.

Monday, October 25, 2010


On the front page of the Trib recently there was an article on how many children with disabilities have died in state homes because of poor oversight, understaffing and neglect.  Complete with pictures of the deceased.  They were adorable.

On the SAME PAGE they had an announcement that the Trib is endorsing Brady for governor.  This is the same guy that will CUT funding to these institutions.

I'm just saying...

PTSD Observed

It hasn't been the best fall ever.  Due to an extraordinary amount of stressful events, I've been in adrenaline overload and very jumpy.  (I call it a PTSD "Flare Up")  So when we discovered that the furnace needed to be replaced, I immediately was CERTAIN that the Sears installation guys were really murderers.  (Remember my Dad was murdered by roofers)

And when we discovered mice in the pantry, it seemed like every bit as dangerous and life threatening as murderers installing a high energy efficient furnace.

And then my world was put into perspective by the discovery that Charley has cancer.

Okay here's what happened:

First of all, when the day for the furnace to arrive came, I realized that no matter how hard I tried to be rational, I just wasn't going to make it.  I am "not entirely sane" but I can see sane on the horizon.  So I looked through my phone book and at every name I asked myself, "Am I okay with this person knowing I have PTSD?" If the answer was, "Yes." I called them and asked them to call me during the day on my HOUSE phone instead of my cell phone. So the murderers installing the furnace would know that, although I am home alone with my disabled son, people are checking up on me.  My friend Eileen actually came over, which was completely awesome.  Having another person in the house was so great.  And the phone never stopped ringing!  Which made me very grateful for good friends.

It was especially terrifying when the Sears Furnace Installers (Otherwise known in my mind as "The murderers") arrived.  They had that lean, nervous look that reminded me of not only the 4 crackhead roofers who murdered my dad, but also Ralph the serial killer.  Eileen hadn't arrived yet, but I called both my brother and my friend who both know first hand what this feels like.  They didn't think I was stupid for being completely freaked out and they really helped me calm down.

So lesson one: ASK FOR HELP

The furnace is great, by the way.

For the next week or so I was only able to sleep if I turned the burglar alarm was on at night.  This is something my husband really doesn't feel comfortable about, but went along with since it was clearly necessary. (Thank you, Charley)


Then we found evidence of mice in the pantry.  This paleontologist's daughter completely freaked out again.  Even with the burglar alarm on, we are not safe from invaders!  It felt like a massive emergency and I spent way too much money at Home Depot buying things to iron clad the pantry from further incursion from these plague carrying tiny monstrosities.  Fossil mouse jaws: OK.  Mice, scorpions, rattlesnakes, etc. in the desert while camping: OK.  Live mice pooping in my linen drawer: apparently NOT ok.  Not by a loooong shot.

This might have been an over-reaction.

I mean, most people live their lives with the illusion that they are safe and in control.  They get a lot more accomplished than I do because they don't waste as much time as I do worrying.  I have no such illusions.  No one is really completely in control or entirely safe.  That's true.

But during a PTSD flare up, I also have no sense of relative danger.  Mice in the pantry, furnace installers, putting Sam in the car in the Jewel parking lot, all seem like life-threatening emergencies.  I live with the illusion that I am in constant danger and that I have absolutely no control over my circumstances.  I have trouble thinking of a good reason to leave the house.  And then I worry about invaders.

It seems possible that reality is somewhere in between the common illusion and my personal illusion.  What is needed is perspective.  Which brings me to Charley's recent trip to the hospital.  He's 58 years old and he has prostate cancer.  Wait.  What?  That's just not fair!!!!

But the thing I'm noticing is that HE is less worried about this than I am!  He is listening to the doctors and doing what is required without procrastinating.  He's a little nervous, but he's okay.  He just might be responding appropriately.

Lesson Three: LEARN FROM THE REACTIONS OF OTHERS.  They might be more sane that me.

But here's the thing I'm pondering now.  I'm really upset about this cancer thing, of course.  But I'm LESS upset about it than I was about the mice (or the furnace installers).  Does this mean that the current flare up is dying down?  OR is this just a deeper PTSD reaction?  Here's something I know how to do.  I can deal with hospital crises.  I know how to nurse.  I know how to take care of medically challenged family members.  I can and will take care of Charley.  No One is going to die on MY watch.  Christmas this year will be me taking care of Charley and Sam, both of whom will require full time, round the clock care and I'll be doing it all by myself.

Isn't that the way life is supposed to be?  No wonder I'm calm!  It's PTSD Nirvana.

Friday, September 24, 2010

Bird Talk

Sam and I took the birds to their annual physical this week.  They were quite nervous and the Cockatiel was very mad that I couldn't find his travel cage.  He loves to look out the car window as we drive.  Instead I had to put him in a cardboard box.  The Parrot went into her travel cage very easily, but she doesn't like riding in the car.  We made it okay and, once in the exam room, I let them both out.  

There we sat waiting for the doctor.  The Parrot on my left shoulder reminding me what a pretty bird she is and murmuring bird jokes in my ear.  The Cockatiel on my right shoulder alternating between ignoring me and hiding under my chin.  And Sam sitting with his vibrating tooth brush and laughing at us.

It was a perfect moment.  All four of us chatting away together and enjoying each other's company.  

It struck me that two of the members of this conversation are completely non-verbal and the third (the Parrot) doesn't really have much to say for herself beyond  "Hello" and "Pretty Bird." 

That makes me the only one of the four of us who thinks talking is an essential part of life.  I REALLY like talking and thinking!  My mother likes to say that I came out of the womb talking.

Yet I'm sitting in a vet's office having a stimulating conversation with three of the most significant personalities in my life.  Charley is a great person to talk to, but he's gone all day and when he comes home he'd rather take a nap or play his instruments.  I mostly talk to these three.  And they are happy to listen to me babble.

"Oh what a noble mind is here o'er thrown," I thought.  "I can feel my brain shrinking."  Still, it was a perfect moment.  We were all three having such a good time together.  

Maybe words are not so great after all...  No.  They're still pretty terrific.  

Saturday, September 18, 2010


Years ago I met a woman who had cared for her daughter at home until the daughter's death.  She told me that, during her many years as primary caregiver, she learned the value of "cleaning her pipes".  Every few months she would go on retreat and just cry.  She said "Why?" was not a question she bothered with much.  She just cried.  Then she slept.  Her husband didn't understand why this was so important, her friends worried about her, but it was the single biggest piece of advice she had for me as a new mom with a son with profound disabilities.

I don't remember this woman's name!!!! But she is one of my wisdom figures.  I think she was the first person (not counting the Book of Job) who told me that "Why?" is a pointless question. It just drives one crazy and never gives an answer that satisfies.  I took her advice on the retreat thing and did indeed go on retreat one day a month for years.

Then my dad got sick, and then he was murdered and Ben got married and my life sort of shifted.  I haven't been on retreat in over 5 years.  So when I realized that summer was almost over and I was so far beyond exhausted that I didn't even remember what exhausted felt like.  I knew I needed a break.  But there isn't a lot of money for a vacation.  That's when I remembered this woman's advice and the fact that, at one time, not too long ago, I was a Spiritual Director.  If anyone should know where to go on retreat, it is me!

So I started calling places I used to know and was startled to find that there are actually people in these places who remember me!  I don't remember me, but they do.  And I booked a 5 day stay at Sinsinawa Mounds, Dominican Conference Center.

There, with the help of a very wise and funny director, I began to let go.  Here in the city with my stressful life, I don't realize how tense and wired I am.  There in the peace and quiet, I suddenly felt like I had electric current running through me.  I couldn't settle, I couldn't sleep, I couldn't think.  I just vibrated.   I was in shock.

There's no huge event in my life that caused this shock, it's the cumulative effect of everything.  I don't have Post Traumatic Shock Disorder, I have Chronic Traumatic whatever.  

Sure enough, after about 24 hours of vibrating, I suddenly crashed and I cried.  And then I slept.  I slept, I ate, I walked, I ate, I knit, I slept, I ate, I slept, I knit, I slept.  Then I cried some more.  Then I knit.  Then I slept.  All the journals and books I brought with me lay unopened.  I did buy three more books and bring them home to read...

(I love these words.  "Wired" as in I was vibrating with electricity and adrenaline.  "Shock" as in hit by lightning that was attracted by the electricity running through my nerves. "Crashed" as in a bullet train hitting a mountain.) 

The only thought I had was that humility is knowing who I am.  I have limitations, I am not God.  I have gifts which are given to me by God.  I am nothing more (OR LESS) than simply me.  

Humiliation, on the other hand, is something that happens to me when I forget who I am and try to be someone I'm not.  God, for example.  Or Martha Stewart.

Sr. Ellie, the wise and funny director, suggested that I feel empty because I have let my gifts lie dormant.  Perhaps that is so.  Perhaps I am so distracted by my attempts to keep Sam going and the house picked up that I neglect to use my gifts.  What are they again?

5 days is not enough.  I could have stayed 3 weeks.  I'm back home and am still struggling with the desire to sleep and knit and sleep and eat and sleep.  I have a few other things to do, but I'm trying to remember to focus on what is most important.

For me.

I am so grateful for the wise women who always seem to come into my life just when I need them most!  I would say that my "pipes" are cleaner now, but still a bit clogged.  I need to take seriously the advice of the wise women and put myself and my gifts a bit higher on my "to do list".

Monday, August 09, 2010

Happy Birthday

It is 364 days until I'm 60 years old.  Sam turns 30 in 18 months.  He's been my lodestone for half my life now.  That's a welcome surprise.  I spend so much time trying to keep him alive and fearing he will die that I don't stop to realize that we're doing pretty good!  We've been together for roughly half my life.  I met Charley when I was 15, so I've been with HIM for roughly 75% of my life.  Talk about "significant others"!  It's a very settling thought.  This is it.  These are the men in my life.  We three are a unit.  Home is where they are.

Other than that, I can't think of anything good about my 59th birthday or the fact that 60 comes directly after 59.  I"m feeling kind of depressed.  I've been obsessed about it for a couple of weeks.  I keep telling people that I'm almost 60 and their reactions are reassuring.  They are always shocked.  "I had no idea you were so old!"  That's nice, because I didn't have any idea either!

I've never really bothered with milestones, but for some reason turning 60 is becoming an "issue".  I don't think I'm ready to be old.   I'm suddenly in a hurry.  There's not a lot of time left.

I think it's time to get serious about a few things.  For example: diet and exercise.  I have an amazing body.  No matter how much I abuse it with worry and overeating and a sedentary lifestyle, it has always stayed pretty strong and healthy.  Lately I've noticed some pretty permanent aches and pains and I have gained far too much weight since I got married.  Goal one: get serious about taking care of myself.

Goal two is move to Portland.  I have learned to appreciate Chicago.  I've lived here for more than half my life.  But I'm not sure how that happened any more than I know how I got to be 59.   I still think of myself as a west coaster.  I'd probably be happy to live the rest of my life here except for two things: Portland is better for Sam and Portland is where Ben is.  

Goal three is to remain a significant part of the lives of my grandchildren.  This year we've had two quick visits from my daughter in law and youngest granddaughter and one very long visit from the two older grandchildren.  (And a brief glimpse of Ben).  It's not enough.  We bond very nicely when they are here, but long distance relationships are hard to maintain and children are so busy with what is right in front of them.  Yesterday Tahreq and I performed a song he'd written in front of church.  I was so proud of him!  I want more first hand experiences with them.

In spite of the fact that I've been mentioning my impending birthday for weeks now, it doesn't look like anyone is going to remember that today is the day.  In fact, when we talk about what we are doing today, I keep reminding Charley that I have to get my driver's license renewed today, but he doesn't seem to make the connection.  I wonder what I'm going to do.  I don't particularly want to host my own birthday celebration.  I definitely don't want to cook dinner and make my own cake.  I think I'll just remind them that it's my birthday and insist that we go out to dinner.  I don't really want a fuss, at least not this year.  NEXT year, however...

Saturday, May 29, 2010


We have been honored to host a couple of industrious robins this spring.  I'm pretty sure it is only two.  They built a very messy nest over our back door and an incredibly perfect nest in the window box on the front porch.  The window is in Sam's bedroom closet, so we had a great view from in the house that didn't bother the robins too much.  They laid 4 eggs in the front nest first and three of them hatched.  It was just amazing to see them grow.  It seemed like they doubled in size just about every day.  

Our entire neighborhood was awestruck.  I could see them shushing their dogs as they walked by.  Several people told me that this was a sign of good luck - and they didn't even know about the nest over the back door!  The robins were pretty friendly while nesting, even letting me snap some photos.  I'm sorry to say, the pictures didn't come out.  But once the eggs hatched, they suddenly were not so friendly and began dive bombing anyone who came up the front steps.  (By a strange coincedence, "The Birds" was on tv that week.)  I began to think we could cancel our alarm system since we now have attack robins.  But Charley met one of them on the front steps and had a long conversation with it.  We assume it was the father bird since he seemed to have a Marine buzz cut hairdo.  After the man-to-man talk, they stopped attacking.  

Then one day the nestlings were so big I couldn't figure out how they all stayed squeezed into the nest.  The next day they were all gone.

Two days later, I noticed that the messy nest was occupied.  I discovered that I had a great view of this nest from my kitchen window.  Still no good photos.  Sam and I go out that door and I was a little concerned about the attack robin phase of robin rearing, but they didn't bother us.  They seemed to enjoy watching me with Sam. They would follow us as we walked from house to garage, chirping encouragement!  A horse breeder told me once that her animals seem to have an awareness that children with disabilities need extra gentleness.  I wondered if the robins knew that this was my fledgling.  Yesterday they all flew away from that nest.

This morning we noticed one fledgling on the ground in the back yard.  It seems to have "developmental disabilities".  The thing that amazed me was how hard both parents were trying to bring the fledgling along.  They just were not going to give up.  They were fierce about trying everything they could think of to help this last one get off the ground.  I was inspired by their determination.

I don't know what will happen.  Our back yard is a pretty safe place with plenty of stuff for a bird to eat while it takes extra time to learn to fly.  It looks like the parents know what they are doing.  

I have always heard that animals kill the "runt" of the litter.  It always bothered me.  This doesn't seem to be true for robins.  I'm rooting for them.  They aren't cold and uncaring.  They don't believe in survival of the fittest.  They are passionately trying to save this little one.  If they succeed in giving their runt that little extra boost, I'm sure they will be proud of themselves for years to come.  If the baby dies, at least they will know they gave it all they could and they did their best.  And the memory of the extra time they spent will be sacred.

I can relate.

Thursday, May 27, 2010

Exceptional Parents

There is a great magazine (or anyway was) called Exceptional Parent for the parents of children with developmental disabilities.  I haven't seen it in awhile, I guess because Sam isn't really a child anymore.  But the idea has stuck with me.  Exceptional children require exceptional parents.  Sometimes I have risen to that challenge and sometimes I have not.  It has troubled me lately that I am on the "not" side of the equation.  We are coming up on 60 and retirement and I am TIRED!  But Sam's needs keep growing, even though he doesn't.  When Charley retires from teaching we will still need income and we are actively thinking about what we might do.  I keep asking myself who I am and what am I good at.  The answer is always that I am Sam's mom and I am good at being Sam's mom and also a lot of craft stuff.

So fine.  My career, so to speak, has effectively been being Sam's mom.  I should think of it as my career.  

At one time I was a pretty great Executive Assistant to several guys.  Now my title is Personal Assistant to Sam.  (for which the State of Illinois pays me significantly less than the other guys I was Executive or Personal Assistant to... including the church job!)

Nevertheless.  I have been keeping a log of my day and started to explore time management for caregivers.  I've taken a lot of time management classes in my life as an Executive Assistant.  They often bugged me because they advocated delegation as a great method of time management.  When you are the "delegatee" that doesn't help much.  Now that I am a stay at home Executive, there has to be a different sort of time management that will work for me.  

So I am taking all the stuff I learned and all the realities of my crazy life and trying to come up with a new system.  I call it the "worry book".  I just keep a spiral notebook and write down all the things I am worried about not getting done.  Housework, bills, Sam Care, phone calls, sweaters for the grandkids, grocery shopping.  Then on the next page I put tomorrow's date and start thinking about what is most important to get done tomorrow.  I have discovered that I think best in the late afternoon or just after dinner.  Doing this in the groggy morning when I have to get Charley and (Hopefully Sam) out the door is just not effective.

I have three columns.  Time, Task and Actual.  I write down the time I hope to get things done and the things I hope to do them.  Then on the next day, I keep track of how the day goes and what time (if ever) I actually accomplish my tasks.

In this way, I'm getting a written record of how my day goes and hopefully I will be able to see some ways of becoming more effective at doing my job.


Tuesday, May 04, 2010

Exciting day

Sam and I went to Starbucks today to see are good friend Eileen.  Eileen worked very hard for many hours trying to get Sam to say her name, and he used to say it.  But he hasn't said anything in years apart from the occasional "Sushi" request!

Later this evening we went to CVS to pick up some meds.  Eileen is the manager of a CVS store.  Just outside the CVS, Sam stopped and said, "Eileen"!!!!  Inside I was showing him a toy I thought he'd love, but he didn't seem too interested.  I said, "Sam don't you want this?" and he said, "No."  When we got home I was a bit encumbered with some packages and, of course, Sam.  I stood at the back stairs and wondered outloud, "How are we going to manage this."  Sam said, "Up."

Of course the really sad part is that he has these moments every now and then.  And then they are gone again the next day.  But it was really great while it lasted. 

It confirms in my mind that he really does know what's going on outside his head, he just doesn't remember how to talk very often.  One doctor told me that is very common among stroke victims.  His theory was that Sam suffered a stroke just a few weeks before birth.  Certainly, Sam has many things in common with people who have had a stroke in the same part of the brain that Sam has damage and treating Sam as though he was a stroke victim has been a very good plan.  It's probably the best theory we have about what is wrong with Sam.  This inability to speak even though he understands what is said to him is called aphasia.  He doesn't understand everything, but he understands a lot.  I never know how much, but it seems safest to assume he understands just about everything. 

I wish we knew.  I wish a lot of stuff. 

I went to the Esperanza Community Services Annual Banquet last night.  It was great, as usual.  Amazing food, great art, saw a lot of people I really love and laughed a lot.  Bought a quilt made by my friend Margaret.  That's a real treasure! 

But there is a real problem with going out in public.  People say stuff and I don't know the correct response.  For example, several people last night said that old line "I don't know how you do it.  You are amazing."  I don't know what I'm supposed to say to comments like that.  I have tried many responses and rejected even more.  Like I have never actually said, "Well, my parents are from the Planet Krypton."  Last night, I came up with a new response.  I said, "Well, he's just so darn cute.  It really makes things easy."  I haven't slept in two nights, but he's so cute that I don't mind... much...  Well I do mind.  A lot.  But I don't know what else to do.  Oh! Oh! There's a good response: "I'm just too stupified with exhaustion to think of an alternative to doing what I do."

Another response I've been thinking of using is to tell that story of the frog in the boiling pot.  You know the one: If you put a frog in a pot of boiling water he jumps right out again.  If you put him in a pot of cold water and gradually turn up the heat, he'll just swim around until he's cooked. 

If someone hands you a kid with profound and multiple disabilities and tells you the whole litany of problems all in one go, you run for the hills.  On the other hand, if someone gives you a beautiful baby boy who just has trouble swallowing, you learn to cope.  Then they say, "well he seems to have one or two other problems."  And you notice a few more as the weeks and months go by.  Each time you say, "Well, that's just one more little thing." After awhile the doctor can say, "well, he seems to have spinal meningitis and he's probably going to die in the next few hours.  Oh no.  Our mistake, it's just an ear infection."  That's a great strategy because you hardly notice the next 42 little new things wrong because you're so happy he made it through the spinal meningitis thing.  After that, they keep on adding stuff gradually for 28 years!  So when someone comes up to you and says, "Wow!  You're swimming around in boiling water and you look just fine."  You say, "Well, he just so darn cute."

I don't believe that story about the frog.  Who would do such a thing to a poor frog anyway?  Or why?  Maybe I should go with the one about my parents being from Krypton.

Sunday, March 14, 2010

Control Issues

I just don't get it.  I did everything right.  All I wanted to do was go to church and sing in the choir.  So yesterday I spent the whole day focused on doing everything possible to make sure Sam got a good night's sleep.  I changed the clocks forward first thing in the morning hoping to "psych" us all into the time change.  I fed him regularly.  I made sure to pay attention to him so he didn't feel ignored.  I did his 45 minute treatments three times and I made sure his medications were correctly balanced.  I even changed the furnace filter because it was looking a little gray on the theory that clean air helps him breathe better.  (It's just a theory.  The allergist says he's not allergic to anything.  His breathing problems are because of the way his head is shaped and because of the way his brain works.)

I bragged to a friend that I had finally reached acceptance of the fact that my number one priority is managing Sam's lungs.  If I do the treatments correctly and get him to the chiropractor twice a month, he is fine.  Even the apnea is reduced.  If I let the schedule get out of sync, he is miserable.  And so am I.  It's a very plain fact.  My life is ruled by this routine.

How nice.  How safe and predictable.  I am secure and in control of my life.  Keep it simple and keep it sane.  That's my motto.  Stress and failure occur when I rebel, peace and success are the result of faithfulness.


In spite of doing everything right, Sam and I were up until 3 am.  He was groaning in sinus pain and trying to be brave.  I was tender and sympathetic and trying not to hit him over the head or give him whiskey.  I WANT TO SING IN THE CHOIR!!!  Can't he get that?

 How deeply spiritual I am not in the middle of the night.  On Friday I did the Stations of the Cross and Taize and then Luis gave a very lovely bi-lingual talk.  I sang.  I read really good scripture verses.  I got to see so many of the people I love.  Rosie and I actually talked about how important it is for choir members to worship as they sing.  It makes a big difference if we worship instead of perform.  I don't do either.  I just love to sing with other people.  Well, maybe that's worship on a very primitive level.  I only get to do this twice a month on a good month.  I miss those two Sundays often because of Sam.  

Two weeks ago I gave a talk at another church.  One of the major themes of my talk was we are not in control.  Why do bad things happen to good people?  Because bad things happen to all of us.  God does not cause them to happen.  They are not part of God's divine plan.  The Bible is full of stories about bad things happening for no reason or because of an enemy.  Whether the enemy is a person or an event or Satan, bad things happen and people in the Bible turn to God and ask for help.  Joseph says to his brothers, "You meant it for evil, but God meant it for good."  Paul says to the Romans, "All things work together for good."  In other words, God answers prayer and comes to us in our distress and redeems the situation.  Sometimes.  God redeems us always.  Eventually.

Last week I got to go to SPRED church.  We all three made it and Charley played with that choir.  It is a wonderful sound.  I do worship when I go to SPRED church and especially when I hear Charley playing lovely music.  The message from Fr. Jim was something like "Jesus says to you today where you are standing right now is holy ground.  Let the fire of my divine presence grow within you.  Nurture it."  I'm home this morning.  Where I stand is holy ground. I have a Bible and some really good tea and Sam's asleep.  I can go upstairs and turn on some music and nurture the divine in me.  That is always a possibility.  

I spend soooo much time alone I'm becoming a Desert Mother and not by choice. 

I have often said that I don't have any choice or control over the bad things that come to me.  BUT I do have a choice about how I will respond to them.  That's the part where God comes in.  God is apparently not going to intervene and make Sam healthy.  But God can help me appreciate my time with him and love my life and manage the difficulties, if I ask.  Although I wouldn't say no to a healing...

But in spite of all my wisdom and 28 years of learning the same lesson over and over and over again, this morning I'm just grumpy.  I didn't get enough sleep last night, I was scared and unsure what to do for most of it and this morning I don't get to sing with the choir.  Life's not fair.

Do you know that the divorce rate among families who have a child with disabilities is somewhere around 98%?  The fact that I make it to church at all is due to the fact that we remain a two parent household after all these years.  There's a miracle.  Charley is playing his saxophone this morning in our old church.  I hope he gets a lot of love and gratitude.  I hope he comes home feeling good and refreshed and ready for another week at work.

I hope I get to go to church next week.  AND SING!

Sunday, February 28, 2010

Macbeth Poem

Hi to all my new friends at the St. Mark Lutheran Church in Worth, Il!!!

Here's the poem, as requested.  I wrote it when Sam was about 2 1/2 years old.

Child Victor

Born: Like Caesar
Natural child
Torn in unnatural manner
From natural mother
Into cold, unnatural sterility.

Purple with rage,
You tore needles from your flesh
Until they pinned you down.
In that world of hoses down throats and bright lights
And rock music
Were a giant.

"He will never see,
Never walk, never talk,
He fails to thrive.
Profoundly retarded, profoundly disabled
And probably
A Dwarf."

You laugh.
And seeing me at the far end of the hall,
Cry, "Mama!"
As you slowly inch your way down your own
Olympic course,
And finally,
Reach your goal.

I lift you up.
With four gold medals glowing in our four eyes
We two alone, are buffeted
By crowds of angels

"He will never..."
That lies like truth.
Never: 'Till Burnham Wood do come to Dunsinane

In two short years,
I have seen you do what no Doctor
Born of woman
Believed you could do.

So lead on MacDuff and Damned be he who first cries
"Hold enough!"

By Jeanne Forsberg with help from Shakespeare.