Lent

Charley's car needs some rather costly repairs and it's about 15 years old.  So before we fix it, we're trying to see how it would be to have only one car.  Cheaper for us, better for the environment and, when Sam doesn't have pneumonia, we'll benefit from doing our errands by foot in the neighborhood.  On nice days, Charley can take public transportation or ride his bike and I can have the car if I need it.  Now, if I can remember to make all doctor appointments on nice days...

This means yet another very large change (I refuse to say sacrifice) on my part.  I am a bird who has volunteered to have her wings clipped!  So for Lent, I guess I'm giving up one more freedom.  This time it is partly to benefit the planet (and the pocket book).  For the last year or so, I've been slowly surrendering all my freedom to Sam's health needs.  We now let him sleep whenever he wants which means he no longer goes to school and he is more than ever my constant companion.  His health is always precarious, so I am his devoted slave and nurse.  The lung doctor says that if it weren't for my care, Sam's story would have ended long ago.  When he smiles, I can't regret a single moment and I choose this life all over again.  

But I miss the world outside my living room window.  Especially now that it's spring.

Second Tuesday of Lent.  Readings for today are Isaiah 1:10, 16-20  Part of which goes:
Wash yourselves clean!  Put away your misdeeds from before my eyes; cease doing evil; learn to do good.  Make justice your aim: redress the wronged, hear the orphan's plea, defend the widow.


And Ezekiel 18:31


Cast away from you all the crimes you have committed, says the Lord, and make for yourselves a new heart and a new spirit.


And Matthew 23: 1-12 which includes:


The greatest among you must be your servant.  Whoever exalts himself will be humbled; but whoever humbles himself will be exalted.


These verses encapsulate a large part of my personal understanding of what it means to live as a person of faith.  Seek justice, care for the disadvantaged, try to do what is right, maintain a realistic picture of yourself and your place in the world (humility) and no matter how badly you messed up yesterday, remember you can always start over again every morning.


How do I do that as a stay at home - stuck at home - mother of a young man with profound disabilities?  


Well, step one: stop feeling sorry for myself.  


Step two: remember how much the world is inside my living room.  Internet, tv, phones; I am in touch with the world in countless miraculous ways.


Step three: gratitude for my many blessings.  I actually do get to choose how I will live my life. Every morning.  I don't get much choice about what happens to me, but I do get a lot of choice about how I will respond.  And a lot of beautiful things happen to me every day, every moment, every breath I take - and every breath Sam breathes.


Step four: don't be stupid or naive.  I'm stuck at home, I don't have my head stuck in the sand.  I'm not blind.  I can take action and reach out.  Actually, I do a lot of reaching out.  These verses and this personal credo are not new to me.  I've been passionate about justice for most of my life.  I may be finally forced to accept that "charity begins at home" and forced to put most of my energy into self care and Sam care, but I can still impact the larger world in small ways.  "Think globally, act locally" takes on a deeper meaning when you don't leave the house more than two or three times a month!


In fact, if I had been able to construct the events of my life and not just my reaction to them, I probably would have become a bright star that burnt out long ago.  I would have thrown myself into some form of activism aimed at saving the world without counting the personal cost.  Being a wife and mother, being Sam's mother, has forced me to slow down, recognize my impotence and that I too have needs.  I am responsible for such a very little and incredibly precious and fragile fragment of the universe: Me and my family and a couple of birds.  At the same time I am part of the human race, and a resident of this planet.  Caring for myself and my family must take that into account.  My focus remains on the small world inside my living room and my awareness includes the larger world beyond it.  I buy plant based laundry detergent and sponsor children in Africa and welcome whomever comes to my door and sign petitions to end DOMA and donate to relief for tsunami victims.  But mostly I check Sam's oxygen levels and pay bills and fix meals.


Maybe all the events of my life are carefully aimed at bringing this co-dependent, Eneagram 2, earth mother with PTSD toward balance and perhaps someday enlightenment. 

Oh Darn

Sam has aspiration pneumonia again and worse than it's been for several years.  I've got him on oxygen most of the time and he's taking antibiotics.  The doctor said to wait 48 hours and if he didn't turn around, I'd have to admit him for IV antibiotics.  The 48 hours is almost up and I think he's improved - slightly.  I really want to make the right decision here.  Going to the hospital might be an important step to saving his life.  We don't want to increase the already extensive scarring of his lungs.  There are so many parts of his lungs that no longer work.

On the other hand, we both hate going to the hospital.  He can't move because of the iv in his arm and I have to sleep on a very cold, hard window seat!  A smaller consideration is the fact that the State of Illinois will not pay me for the days he is in hospital because they think of it as time I don't work.  Hah!  This is a small consideration because they only pay me for 4 hours a day anyway!

It's Lent.  You would think this would give me time to reflect and be mindful of my life.  But frankly, I'm too sleepy.  MY body has never really accepted Sam's habit of sleeping from 4 am to 11 am.  I still like to sleep from about 10 pm to 6 am.  So when he's sick I only get a couple of hours sleep.  Then we both nap in the afternoon on the couch.  But the rest of the day I'm giving him medicine and wandering around the house like a zombie and groggily trying to think of all the things that need doing.

Oh and watching tsunami videos.

I heard from my friends in Japan and they are okay but in shock.  They are still experiencing several after shocks daily.  Tsunami and nuclear explosions are the terror at the core of every Japanese soul and they are suddenly facing both at once.  My heart weeps for them. 

Want to do something?  You can donate to people who seem to be doing a good job with the relief efforts:
American Red Cross
Salvation Army
Crash Japan

Sam's Condition (just the bad stuff)

I had to write this for a social worker.  It was hard.  So I thought I'd post it, because it felt like a challenge like this should be memorialized - or something.  Either I'm just feeling sorry for myself or else I'm really proud of my ability to spell arcane medical words.

Sam Forsberg is a 29 year old boy with the mental capacity of about an 18 month old.  He is about 4 1/2 feet tall and, on a good day, weighs 80 pounds.  If he goes too much below 75 pounds he gets sick from being too thin.  He has aphasia (which means he can't figure out how to talk) and dysphasia (difficulty swallowing).  He also has a very high arched palate which may be part of his swallowing difficulties.  He has bi-lateral choroidal coloboma (which means a hole in the back of both of his eyes) and strabismus and nystagmus (which means his eyes wobble up, down and sideways).  The last time we took him to the eye doctor, she said he also has some astigmatism.  He has a certain degree of ataxia (which means he shakes or trembles a lot especially when tired.)

All of this is because something went wrong about a month before he was born.  Maybe he had a stroke.  He was born with brain damage in the back part of his brain.  He can't walk because he has damage to his vestibular nerve and so he has very little sense of balance.  He isn't very strong, tires easily and has very low muscle tone. He also doesn't have a very good temperature regulator, so I can't take him outside if the weather is too cold or too hot.  He has asthma, so I am not supposed to take him outside on "ozone action days".

He can't chew, which means everything he eats must be pureed or mashed.  According to the dentist, this means his teeth are MORE likely to decay than if he actually chewed, so I have to be very careful to brush his teeth often.  If he swallows something too thin, he chokes and some of it goes into his lungs.  If he swallows liquids that are too thick, he chokes and stuff goes up his nose.  Sometimes things that he has swallowed half way come back up into his nose and then, we think, go back down into his lungs.  He has very extensive nasal polyps because of this nasal regurgitation.

All of his life he has had a lot of congestion.  No one is quite sure why.  He doesn't seem to have any allergies, although he does have asthma because his lungs are so chronically full.  His nose is always running and he often has huge amounts of mucus clogging his nose and throat.  He had almost constant ear infections as a child.  The muscle that is supposed to help his ears drain is either missing or non-functional because of his high palate.  We lost track of how many different ear doctors tried to put tubes in his ears.  (I can think of 5 off the top of my head)  The tubes never lasted long.  But his ear drums have been perforated so many times that he seems to have developed permanent holes in them now, so we don't have as many ear infections.  This is good because he is resistant to some of the antibiotics and allergic to others because he's been on them so often.  Now we try to avoid using antibiotics as much as possible.  He usually gets pneumonia about once a year and we give him antibiotics for that. 

About 6 years ago he had a very bad bout of pneumonia and had to be hospitalized.  At that time we met Dr. Mutlu.  He has been caring for Sam's lungs ever since.  He discovered that Sam also has Central Sleep Apnea  which causes his Co2 levels to rise.  Sam is in compensated respiratory acidosis.  This means his body is working overtime to compensate for the extra Co2 in his blood.  If the Co2 rises too much, he dies.  So bringing down the Co2 has become a central focus of our lives the last 6 years. 

We tried for about a year and a half to get him to wear the bi-pap machine, but finally gave up because I wasn't getting any sleep and started to see snakes in the corner of the room!  Instead, I keep a close watch on his blood oxygen level with a pulse oximeter.  I try to keep it between 87 and 95.  If it gets too low, I have an oxygen condenser at home and I can give him oxygen.  It never gets too high naturally, but sometimes it can get too high with the oxygen condenser.  If it gets too high, the sleep apnea gets worse and his Co2 levels rise.

He has always seemed to sleep best between the hours of about 4 am and 11 am.  I used to dress him in his sleep and take him to the car to get him to school or program.  He was always late.  I would feed him in the car when he woke up.   Dr. Mutlu said this should stop.  It is vital that Sam sleep whenever he can.  When he sleeps deeply, he breathes deeply and this is the best way to bring Co2 levels down.  So we let him sleep.  He often takes a nap in the afternoon as well.  This means that he has been unable to attend Esperanza very often.  When we have a very good day, I bring him to visit for a few hours from about noon to when they close at 2:15. 

In addition to letting him sleep and preparing all his meals carefully so he won't choke or regurgitate, there are also his breathing treatments.  I give him chest PT with a chest vibrator 2 or 3 times a day.  This takes 30-45 minutes each time.  I also give him a nasal irrigation twice a day and nebulizer 4 times a day with medications prescribed by Dr. Mutlu.

I have three recent examples of how necessary all this is.  First: in December my husband had surgery for prostate cancer.   He came home with a catheter and was very weak.  I spent a great deal of time taking care of him.  I skimped on Sam's treatments.  Sam got pneumonia.  Second: whenever I fail to keep all the food and sleep and treatments in balance, Sam is up all night whimpering.  Third: When we went to see Dr. Mutlu on February 22 of this year, Sam's blood gasses were stable!  After 6 years of rising blood levels, and all my efforts to slow the rate of rising, we have finally stabilized him!  His blood levels are still much higher than normal, but this is a great victory.

So, in summary, a brief list of his many diagnoses would include: profound mental retardation, ataxic cerebral palsy, chronic hypercapnic respiratory failure, bronchiectasis, central sleep apnea, asthma, dysphasia and aphasia.  There's probably a several more, but that's all I can think of at the moment.  Dr. Mutlu speculates that he has Joubert's Syndrome.  His small stature is due to failure to thrive in his first year.

Can someone PLEASE explain?

Here's what I keep hearing on the radio (and reading in Time magazine!)

1% of the people hold 90% of the wealth.  Why should I support tax cuts for them?

 Our primary and secondary schools keep lagging further and further behind the rest of the world.  Why are we cutting back on education?

5% of the world population lives in this country and we consume 75% of the medicine and we pay much, much more for health care.  Okay, so why are we only 37th as far as quality of healthcare?  And why is the GOP intent of repealing health care reform?

The Social Security program has been paying its way and has enough surplus to continue doing so for at least 27 more years.  Why does it get mentioned every time someone is talking about the deficit?

It seems to me that the gap between the wealthy and the poor is getting larger and the real struggle is not between the political parties - liberal vs conservative - it is (or should  be) a struggle between whether we want to live in a democracy or return to the dark ages!  Not only the money, but the power is all getting pooled into the hands of the very wealthy and the rest of us are carefully controlled so that we keep on arguing amongst ourselves while everything is taken away from us.  We should not be arguing about the rights of minorities or immigrants or GLTBs.  We should embrace equality and work together to make sure we don't become scapegoats and serfs!

True Wisdom

I had a great conversation with my brother Bil the other day.  As usual, we each gave the other a lot of stuff to think about.  Here's one gem:

He believes that the mark of true wisdom is that it engenders tolerance.  So God, who is all wisdom, is full of vast tolerance toward us.  In other words, as we try and try again to discern the will of God, God is continually saying to us, "Well that's not quite what I meant but, okay, we can work with that."

That rings true with my experience of God.   I think it likely that St. Peter would also agree.

Murder Most Foul

Ok it's been 6 years and 6 weeks since the murder.  I'm mostly back to normal.  But with glitches.  Charley fell down the other day - slipped on some slopped dish water on the kitchen tile.  He's sustained some bruises and for some reason felt that an elastic bandage might help the pain.  So he walked over to CVS and bought one.  So far so good.  

Well, he didn't actually use it, he just left it on the counter.  Enter me, early morning groggy, to find an elastic bandage box on the kitchen counter with a picture of an entire leg wrapped up ... like ... a ... mummy.


ZAP
Suddenly I am transported back 6 years and I'm sitting on a hard pew in a courtroom.  This isn't memory, it's a sci-fi flashback.  I could feel the hard wood beneath me.  To my right and up a few rows is a very sullen Richard James Kasparson.  A few minutes from now, there will be a break while the jury deliberates and he will turn an glare at me without blinking for several minutes.  Glaring with hate and menace in his eyes as if I am to blame for the fact that he is sitting there, awaiting the verdict of his peers for the charge of murdering my father.  I don't blink either.  When the jury comes back, several security guards with lots of weapons will enter the room.  Two of them will stand near me.  The night before Kasparson had bragged that if the jury said he was guilty he was going to "make a break for it."  I will feel safe with these burly commandos standing near me.

But right now the prosecutor is doing his summation.  "15 minutes.  That's how long it took for Charles Repenning to die.  7 minutes of seizures before he became unconscious.  I am going to talk to you about that death for 7 minutes so you can understand what the defendant put Mr. Repenning through."  And for 7 minutes he gave detail after detail of the my father's horrible death while huge slides flash on a wall of the courtroom.  Slides of the murder scene.  Slides of the lesions where he was bound with the telephone cord.  Slides of the bruises on his neck where someone tried to strangle him.  Slides of his body, naked except for boxer shorts and the elastic bandage wrapped over and over and over around his neck and face and mouth and ears and eyes and head.  

 It was the longest 7 minutes of his life and probably mine.

Six years ago I came home and threw away every elastic bandage I had saved over years of repeated sprained ankles.  I knew I was being crazy, but they looked to me like murder weapons.  Dangerous things to have in the house.  I gave myself permission to throw them away because, I reasoned, I was in shock.  I have walked carefully and refrained from high heels ever since so that I do not require another elastic bandage.  I haven't really thought about it since.  If I had, I probably would have thought that I was "over" that particular phobia.  I mean, really.  It's been six years.  Life goes on until you are murdered.  You have to move past the rough spots.  Right?  Apparently not.  Some things have changed about me permanently.

My reaction to that box yesterday was the same as it would have been if I found a rattlesnake in the kitchen.  Namely: don't panic, think calmly and protect your family by carefully getting rid of the dangerous thing.
I apologized to Charley and threw it away.

I feel much better, and foolish. 

Pureed Food Recipies

Sam's a "big boy" and doesn't like to eat baby food.  He wants to eat whatever I'm eating.  This is a bit of a problem because I like to chew and he can't.  He has dyphasia (swallowing problems) on top of that.  When he gets too much food in his mouth, or hoards food he can't chew in his palate, it produces an amazing amount of saliva which goes up his nose.  When he swallows liquid that's too thick, it clogs his nose and he just about suffocates.  We ordered him a milk shake once and I thought we'd lost him.  Not going to repeat that experiment.  He does like Wendy's Frosty with a spoon.  If it's too thin, it comes out his nose when he swallows.  Sometimes the food that is just right only goes half way down his throat and a couple of minutes later it comes out his nose.  Sigh.

Numerous swallow studies have not really given us a solid picture of what is going on or how much this is related to his ever diminishing lung capacity, but it's a pretty safe bet that something that isn't supposed to be there is getting into his lungs and clogging them up.

So I have to feed him very carefully, but it has to be attractive, nutritious and taste good.  Culinary challenge they don't often cover on the food network!  One bonus: calories and fat are not an issue with this boy.  I'm always trying to keep his weight UP.

Of course calories and fat are a huge issue for his mom who knows how to chew!  So my grocery cart is a very peculiar mix of high and low fat stuff.


But over the years I've discovered a lot of things that work for Sam.  Some things I can serve to everyone as is (which thrills him) and some things require some last minute adjustment for Sam, but still are essentially the same thing we are eating.  Sadly, most of the time he just has to put up with purreed whatever we are eating because I just don't have the time or energy to make it special.  But I try to make him food he enjoys.


If I'm having a sandwich for lunch, I put the same stuff in the food processor, meat (or baked tofu or whatever), tomato, pickle (lettuce doesn't work very well).  Then I add a goo factor.  He likes Kraft Olive Oil reduced fat mayo or that Italian sandwich mix (gardineria?) or ketsup.  (I like fancy mustard.)  I put in one slice of bread and mix it for 30 seconds.  It turns into a kind of sticky glop that holds it's shape.  Then I make breadcrumbs (often toasted) of the other slice of bread.  I roll tbsp bits of the filling glop in the bread crumbs and shape them into little rectangles.  Voila! Finger sandwiches he can eat with me.


Really fluffy pancakes can be eaten just cut up (not pureed) if they have enough syrup on them.  Cheese cake is the ideal desert.  Cake is not very smart as it crumbles and chokes him, BUT if you add some cream or other liquid it becomes Dulce de Leche and very soggy.  Perfect for Sam to consume with a spoon.  Looks like cake but doesn't crumble!  If you take Starbucks Classic Coffee Cake and pour mocha frappicino over it, you get something similar to Tiramisu!  (Be sure to ask the Starbucks Barrista to give you the cake on a plate!)


I recently tried a Butternut Squash Soup with variations that was a huge success.  I got the recipe from someone named Gabster Roolz on Cooks.com.  Here's my variation:


1 chopped sweet onion
4 cloves garlic
tsp dried basil (or thyme)
Some fresh ginger (about 1/2 a thumb's worth)
Evoo
1 cubed butternut squash
1 C chicken stock
3 C water
1 bay leaf
pepper
2 medium sweet potatoes
1 pt heavy whipping cream  (NOT Whipped Cream)


You don't have to chop the garlic and ginger very much since it will all get pureed.  Just peel them and chop coarsely.  Saute onion, garlic, ginger and basil in the evoo (extra virgin olive oil).  Add squash, stock, water, bay leaf, pepper and sweet potato.  Boil 20 minutes.  REMOVE BAY LEAF.  Puree the rest.  At the last minute add the cream.  The whipping cream adds a lovely bulk to this soup and makes it exactly the right texture for proper swallowing.  BIG hit.

The chef Simply Ming says that heavy whipping cream is different from heavy cream because they add something to it to make it whip up better.  I don't know but I did love the way the heavy whipping cream bulked up the puree and made it gorgeous.  Of course, I suppose I should have the soup without the cream and just add it to Sam's portion... 


Here's another thing, I've been reading labels and Carnation Breakfast Essentials has pretty much the same nutrition as Ensure or Boost.  It also tastes a LOT better and is MUCH cheaper.  You have to add a bit of Thicken or Thick-it to make it the right consistency, but it's still cheaper.  Sam consumes 3 or 4 nutrition drinks a day so this is really good news.