Brian

I notice and appreciate guys like Brian. Every day Brian goes to work keeping the cafeteria dining room clean at Northwestern Memorial Hospital. That's what he's paid to do. He's very good at it. Tables and floors always clean.

Cleaning may be his job, but it's not his calling. He Is a warm, friendly guy. He remembers Sam and what he likes to eat. Last spring when Sam was an inpatient, Brian brought him chocolate pudding.

I'm taking a break right now while Sam watches a movie. As I expected, Brian came over to ask about Sam. But as I sat here longer, I noticed he stopped at other tables as well. He knows all the regulars at this hospital! He asks one person about a book they both are reading. He asks after family members who aren't present. He knows the conditions various people are battling.

If Brian knew I was writing this he'd probably laugh. He's not doing anything special. He doesn't think he's extraordinary. But in my book, he's a holy man. How many people's lives has he healed just by noticing and remembering they exist?

Only God knows and I bet God is smiling.

Pneumonia

Waking in a strange place, groggy from too little sleep, I can't remember where I put my glasses.  So bleary, groggy and frustrated, I begin to pat around; hoping I can find them with my hands rather than my feet.  Disoriented, I am not sure where I am, but I know where Sam is.  I don't need to see to find his beloved head and check that he is breathing and the tube is still in his nose.

He is okay.  The world shifts into place.  I remember that I carefully placed my glasses under the couch so I wouldn't step on them.  Now I can see well enough to attach the monitor to his finger and check his heart rate and oxygen level.  Yeah.  He's okay.

I slept on a mat on the floor by the couch.  Sam's sleeping on the couch, the oxygen tube still in his nose.  I'm in my own living room.  I remember Charley carefully not stepping on me as he went to work.

Time for tea and then I'll start his nebulizer treatments again.  I have to give the first one before he wakes up in order to get enough in each day.  He's not eating, I have to try to get him to eat something before 2.  He takes his next pill at 4 and he can't have any milk products between 2 and 6.  I never realized how large a percentage of the things he will eat are milk based - even Ensure!

Got a fabulous new cookbook called "I Can't Chew." It's full of nutrition advice and recipes for people with chewing and swallowing problems.  But I'm too tired to read it.  I'm too afraid I'll lose Sam before I have a chance to try all the recipes.  I look at the cover and go back to the trashy novel.  Or knit.  I thank God for yarn and trashy novels and tea when Sam is sick.

Two nights ago, I was sure he was sick enough to be admitted.  But, since I've been through this so often, I knew it was better to wait for the doctor's office to open than to call or visit the ER in the middle of the night.  You wait in the comfort of your own home instead of in a cold, hard waiting room chair.  But I couldn't sleep because I was so worried.  So I started packing my overnight bag.  At 8:45 I called the office, at 10 the doctor called me back.  After listening to my experienced, coherent report, she said, "Well, it sounds like you have everything under control.  I'll call in a prescription and, if he doesn't turn around in a few days, you should bring him in."

Under control?  I wouldn't describe it that way.  But it's a new day.  I found my glasses without the aid of my sight.  The tube which feeds air into Sam's lungs didn't get wrapped around his neck and strangle him in the night.  I don't have to think about what to wear, I'll just grab something from the overnight bag still sitting on the chair.  Himmat taught me how to make good strong Indian Chai recently.  On the whole, it's going to be a good day.

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. 

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.

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.