Dark Days

In the beginning (30+ Years ago), life was a continuous nightmare.  I was in denial - or still had hope - it's hard to tell the difference even now.  I thought Sam was just off to a bad start and some doctor would fix him.  Soon.  

Cynthia Stack, brilliant clinician with absolutely no compassion, put an end to that phase.  She examined him for a couple of minutes and pronounced, "Profoundly retarded, profoundly disabled and probably a dwarf," and walked out of the room. Technically, he's a midget not a dwarf.

Another doctor said, "I believe we should do everything we can for children like this until they are 3 years old.  And then, for the sake of the family, if they aren't any better, we put them in an institution."  At the time I thought, "No way."  And we didn't, but looking back I see his point.  I don't think I agree with it, but I understand what he meant.  Making the decision to keep Sam didn't feel very important at the time, it just seemed like the obvious choice.  But it was one of those Doctor Who universe-splitting moments that change the future forever.  We surrendered all hope of being "normal".  It transformed our family, it made the three of us (Charley, Ben and me) into who we are today.  I don't know if that's good or bad, it's just true.

That decision was the end of a long process of acceptance.  He wasn't going to get better.  He wasn't going to grow up.  He wasn't the little girl I thought I was carrying when I was pregnant, he was Sam.

Fast forward 30 mostly wonderful years.

30 years in which I have passionately fought for quality of life for my baby.
30 years in which I have been slowly transformed by the combination of intense joy and overwhelming sadness that being Sam's Mom involves.
30 years of sleep deprivation, worry and learning words like bilateral choroidial coloboma and ataxic cerebral palsy and central sleep apnea and cystic fibrosis-like bronchiecstasis and compensated acidosis.


Sam is the author of my world view, my faith, my politics, my personality.  When people comment on my wisdom or creativity and wonder where it comes from, I point to Sam.  Maybe these things were latent within me and Sam brought them out.  Every mother of a child with disabilities is different, every child with disabilities is different.  But the combination of Sam and me has been profound and deep. 

And now it's drawing to a close.  We're losing him.  I've always said that I hope I live longer than him because he would be so lost and helpless without me.  Now I am facing the fact that he is declining and will almost certainly die before me and I will be so lost and helpless without him.

I'm still fighting for his life, but I am coming to a new awareness of my imminent defeat.  No one knows how much longer we have together, but it's getting worse and I'm scared.

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.

Sam's Sweater

Problem: Sam has an extremely curved back.  I take him to a chiropractor twice a month, but there's only so much he can do.  He lessens Sam's pain, helps him breathe more deeply so he doesn't get pneumonia and, hopefully, keeps his back from getting worse, but he can't fix what's already happened.

Sam's sweaters rise up about 3 inches in the back because of the curve.  This means, besides the tacky fashion statement, that his waist is often cold because sweaters that fit in front don't cover him in back OR sweaters that cover his back are too bunchy in the front.

 Although his back is also curved from right to left, sweaters seem to lie pretty straight across the back.

So I decided to knit a sweater that actually fits him.  I'm using R2 Fuzzi Felt because I have soooo much of it in my stash and because it's bulky and fast and hopefully warm.  It is 58% nylon, 16% merino wool, 20% Acrylic and 6% alpaca.  That's 22% more natural fiber than the sweaters I buy him at Kohls....

I'm taking a course at Craftsy.com on knitting for curvy figures - by which they mean me - but I'm making Sam my first attempt at curvy knits.  (The course was a Christmas present from my DIL and son.)  My brilliant DIL suggested that I knit it from the top down so I can try it on as I go.  I bought Barbara Walker's book "Knitting From the Top" and started casting on for a v-neck raglan cardigan.  Here's where we are today:

 The offset color is where the raglan seam increases come in.  I'm not sure if I like this or not, I'm going to leave it and call it a design feature.  NEXT sweater...

But I think you can see that already the front is a lot closer to his waist than the back and also that the back is starting to be too small while the front looks just about right.  So I'm going to try increasing an extra two stitches every right side row in the back AND do a short row in the back every wrong side row.  I'll also stop adding stitches to the center front.  Each short row adds two rows to the back and with my gauge, I'll need 9 or 10 to make the 3".  I'm not sure how much wider I need the back to be.  

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. 

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.

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.

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".

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?

Governor

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...

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.

Wrong.

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!

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
YOU
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
Cheering.

"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.

If you aren't busy being born, you are busy dying

For over a year now, I've been focused on the fact that Sam is dying.  If the sleep apnea doesn't get him, the bronchiecstasis will.  He's a little weaker today than he was a year ago.  He is missing more and more days at Esperanza because we just can't get it together get him strong enough to go.

A couple of weeks ago I started thinking that this terror of his death has me "stuck".  I am missing out on the joy of today because of the terror of some future event.  He might go another 50 years or he might die tomorrow.  But hold on, that is also true of ME.  That's... NORMAL!  Well, gosh.  

In the meantime, what IS extraordinary is that I love my job.  I get to take care of Sam.  I get to love Sam.  I get to wake him up and see his eyes crinkle up with joy when he sees me.  

I live with a secret.  I look fairly common place, but in my heart is a source of joy and pain that is absolutely profound.  The same thing that brings me my greatest joy is the thing that is the source of my deepest fear and pain.  I have a son who is full of life and joy and who is sick more often than he is well and who is going to die.  Taking care of him is the greatest honor of my life, my highest achievement and it's not going to make me famous or solve world hunger or stop war.  (Sorry, Dad.)

Caregiving transforms me.  Caregiving is my spiritual practice.  Caregiving is Zen.


I rented "How to Cook Your Life" and watched it last night. I love it.  Edward Espe Brown is so sincere and transparent.  He recites a poem from the last letter his mom wrote before she died.  It's by Donald Babcock and first appeared in the New Yorker on October 4, 1947 (V.23, No. 33, pp 38-39)

The Little Duck
Now we're going to look at something pretty special.
It is a duck riding the ocean a hundred feet beyond the surf.
No, it isn't a gull. 
A gull always has a raucous touch about him.
This is some sort of duck, and he cuddles in the swells.
He isn't cold, and he is thinking things over.
There is a big heaving in the Atlantic,
And he is part of it.
He looks a bit like a mandarin, or the Lord Buddha meditating under the Bo tree.
But he has hardly enough above the eyes to be a philosopher.
He has poise, however, which is what philosophers must have.
He can rest while the Atlantic heaves, because he rests in the Atlantic.
Probably he doesn't know how large the ocean is.
And neither do you.
But he realizes it.
And what does he do, I ask you.  He sits down in it.
He reposes in the immediate as if it were infinity - which it is.
That is religion, and the duck has it.
He has made himself a part of the boundless, by easing into it just where it touches him.

Maybe I resonate with this poem because I spent so much of my youth cuddling in the gentle heaves of the mighty Pacific, past the breakers, and feeling rocked by the womb of the world. But I do resonate with it.  This poem came to me last night when I needed it.  I am the primary caregiver to a philosopher who is just like this duck.  I can learn from him how to repose in the infinity which is now and ease into the the boundlessness of today.  That is religion.  That is something I can do.  Today just might be the best day of the rest of my life, and today is beautiful.  I get to go feed Sam.



 

Speaking of Angels

Speaking of angels, here's a video my friend Himmat sent me.  http://www.youtube.com/watch?v=Xow2gnVTUjs

Angels

Well, it happened again.  The three of us went to a wonderful concert by Luis and Roy http://www.tenors.net and enjoyed chatting with a lovely lady who told me I was "an angel" for being Sam's mom.  I don't understand why people feel that they need to tell me that.  I realize they think they are complimenting me, but for some reason it just makes me cranky.

Instead of speculating and grumbling, however, I have decided to write down some true stories about "angels".   


Ash Wednesday
Sam and I were walking down the center aisle to receive our annual smudge when suddenly he stopped and refused to go any further.  He reached into the pew beside us and, with his best smile, touched the woman sitting there who was praying earnestly.  As she stared into his smiling face, tears began to flow down her cheeks.  Sam made it very clear that he wanted her to get up and come with us.  People were backing up behind us, unsure whether to "cut in line" or not.  Rather than cause a further scene, she got out of the pew and came with us.  We got up to the altar rail and Sam knelt down beside her and began to babble and stroke her arm.  She just cried and cried and said things like, "Oh thank you."  Then the pastor came by and, instead of just doing his thing and moving on, he knelt on the other side of the rail and said "Thank you Sam for teaching all of us so much about compassion." I don't have the faintest idea what that was all about.  I'm just the mother.  I don't mean to be irreverent  here, but I kind of know what Mary must have felt as she watched her son do weird and miraculous things.  I'm  not the angel.  I'm just the amazed and fortunate by-stander.



Marriage Counselling
I play cuatro.  I love cuatro.  One of my favorite cuatro players is Queque Domenich.  Amazing guy.  Check him out on iTunes.  A few years ago, I got to play "back up" for him along with 200 other cuatro students at the graduation ceremony for the Chicago Cuatro Orchestra Program.  (ok I'm practically old enough to be the grandmother of any of the other students, but I was just as excited as they were.)  It was incredible.  We didn't know he was going to be there.  I will never forget the thrill of playing with him that night.   Afterward, we all lined up and he patiently signed all our cuatros. 



This is the cuatro that my husband misplaced.  I was devastated.  

The next day, when I took Sam to Esperanza, I was still very upset.  Eddie, one of the verbal guys in the room, noticed and asked me what was upsetting me.  I told them and asked, "Do you think that losing such a precious cuatro is grounds for divorce?"  I was sort of kidding.  But they took me very seriously.  When I came back to get Sam that afternoon, they had worked out an answer.  No. Losing one cuatro, no matter how precious, is not grounds for divorce.  5 is the magic number.  If Charley loses 5 cuatros then I can divorce him.  In the meantime, some retribution must be taken for the loss of this one precious cuatro.  The consensus was that Charley should pay for me to take kickboxing lessons.  

This advice made me laugh, which always helps a bad mood.  But when you think about it, it is pretty good advice.  In the room they have one of those big hanging bags that you can kick and hit, and have found it very useful for working out frustrations.  They recommended I try it.  More than that, it is incredibly healing to have someone - or a whole room of someone's - take my feelings seriously.


Murder Most Foul
When Billy called to tell me that our dad had been brutally murdered by a couple of crack addicts as they robbed his home, I went into shock.  I didn't know what to do with myself or what to feel.  I called Kelly, the weaving workshop instructor at Esperanza, to tell her that I wasn't going to be able to volunteer for awhile.  My friend Phillip took the phone away from Kelly.  He knew just what to say.  "Your father has died?  I bet you are feeling very sad right now, aren't you?"  He went on talking very matter of factly about my grief and, as he spoke, I started to feel again.  I started to cry for my dad.  Then Phillip took the cell phone all around the second floor of Esperanza finding people who knew me and telling them, "Jeanne's father has died.  Talk to her."  They all had something to say to me.  Sometimes it was in Spanish, and sometimes it was in some personal language that no one has figured out yet, but they all sounded caring.  I cried and cried and cried as they kept on passing the phone from person to person.  And that was the experience that gave me the strength to face all the stuff that came next.  


These people have cognitive disabilities or sometimes it is called cognitive challenges or mental retardation.  But whatever you call it, it doesn't impact their heart and their feelings.  They give so much joy and love and wisdom.  It is in our hearts that we feel the impact of miracles and they understand heart better than most of us.  These people are a gift from God to me and they have changed my life for the better.  I think that makes THEM the angels.  I'm just a recipient of their grace.


Bobby Tirelli, another friend from Esperanza, says in his new book, "I like angels.  They're real entities of love.  They've saved my life a hundred million times."  Amen, Bobby.

 

What Have I Accomplished?

Yesterday my therapist and I were discussing my diagnosis of PTSD. This is a bit of a misnomer. I've never been in a war zone or been attached by dogs or raped or anything like that. I actually suffer from CHRONIC Traumatic Stress Disorder, except there isn't any such thing. There should be. It's the result of being the oldest daughter of a WWII vet who DID have PTSD, which gives me a vulnerability to developing it, combined with 27 years and counting as the mother and primary caregiver of a profoundly sick and disabled son. (In this case, Person First language is inappropriate. Sick and Disabled are the point of that sentence). And then, the final blow, the brutal murder of my PTSD Dad 4 years ago. These things combined have transformed me into someone I am struggling to get to know. Someone who apparently deserves the diagnosis of PTSD.

So we were talking about my life and my guilty feeling that I haven't accomplished much. I'm no Madame Curie and I sort of grew up thinking I should/could be. She (my therapist) said that I'm too close to my life to be able to stand away from it and say, "WOW. That's a lot of work." All I can see is that I'm getting more and more tired and frightened and that there are days when I really don't want to leave the house. I just want to stay home, take care of Sam and do something creative. And, the way my life is constructed, I can do that. Which makes me grateful but I wonder if I'm really pulling my own weight. Maybe I'm so far from being Madame Curie that I'm actually a wimp.

I should mention here that I shared this fear with my husband at dinner and he actually snorted! (A comforting sound) and said, "You are NOT a wimp. No one is Madame Curie." God Bless him. Since he gets up every morning and goes to a very difficult job without complaining, his opinion means a lot.

Another thing that happened yesterday was I got to sit in with Sam's Spred Group at Agape and watch while someone else struggled to keep him clean and keep him from aspirating food and keep him from stealing food from someone else's plate. It's a frantic activity. She's really good at it and I trust that she takes the whole thing very seriously. It was like looking at myself as other people must see us when we eat at a restaurant. It looked really hard. It looked really beautiful because they obviously enjoyed each other. For the first time, I sort of understood why perfect strangers think it is okay to interrupt us in restaurants and say drippy things like "God had sent you a little angel". ("The Stars are God's Daisy Chain" - Madeline Basset) "Angel" is not the first image that comes to mind when you are wiping chocolate milk and snot out of your son's nose.

So I was thinking about this "standing back from my own life" thing. The closest I can come to that right now is the secret thoughts I have and shove away because they are not nice. For example, when I am talking to a new mother. She will talk about how tired she is and how the baby never stops crying and how nasty poopy diapers are. She is afraid the baby might have a little cold or an ear infection. I will give her grandmotherly sympathy and, if appropriate, suggestions. Usually she just needs encouragement and approval. I'm good at giving those.

But here are the thoughts I'm struggling NOT to think: "You WIMP! Your baby will be fine and 6 months from now you will be sleeping soundly." MY baby has grownup poop and pubic hair. Try changing THAT. (grumble, grumble) I have been changing diapers every day for the last 30+ years.

For 27+ years, I have gotten up in the middle of the night to be sure my child is still breathing and often sat beside him and waited too long for the next breath. It is routine for my husband or myself to get him up and do some physical therapy or connect him to some machine to stimulate his breathing.

I have ceaselessly watched my child with an eagle eye to see that he doesn't aspirate too much liquid. I have tried to get his other occasional caregivers to understand the life and death importance of feeding him appropriately. When I drop him off for a few hours at school or Adult Day Care I worry that they think I am over-reacting and will not take my instructions seriously.

I have slept in hospital beds beside him when he is hovering between life and death. I literally pull him back from the brink of death 3 or 4 times every year. I check his oxygen blood levels every night at least once, usually more. I have 3 machines which I use on him 2 or 3 times a day to keep him breathing. I have 3 more I can use if he needs them. I grind up everything he eats and then try to form the pureed food into something that doesn't look pureed because he doesn't like to eat pureed food. I have developed a kind of mental telepathy with him because he is non-verbal. I am the captain of a team of doctors who advise me, but defer to me as the primary care-giver. This is a responsibility I accept gravely and with terror. I just barely have a Bachelor's Degree! But I guess I deserve a doctorate in "Sam".

I worry that the roofers will light a cigarette while I am giving him oxygen and blow up the house. I have told them how dangerous it is over and over again and they say, "Yes, yes." But I still find cigarette butts in the garden under the eaves.

I clean blood and chocolate milk out of my son's ears so routinely that it doesn't even occur to me to call a doctor.

There are so many things that I deal with calmly at home without even thinking of calling the doctor. These are things that would have any other parent calling 911! But I know how to treat them and a trip to the ER is so hard on him. I went to the ER so many times early on. Now its only once every year or even less. This is partly because he is stronger and partly because I know what to do at home. It's much easier to treat him at home where we can all watch Kung Fu Panda and sleep in our own beds.

That ER hiatus may be drawing to a close, however. His health is very slowly deteriorating and there may come a time when frequent ER trips once again become routine. I try not to think about the future very often. If it happens, it will happen when it happens.

He looks so happy and "normal" because I have dedicated my life to keeping him that way. But people don't understand how fragile he is because he doesn't have tubes coming out of him. I have fought against tubes because I want him to be happy. I hope I have made the right decision. When he dies, I will worry that it was because I refused the tubes. But no one ever knows what would have happened if... He looks so happy, doesn't he?

Sam Care is wearing me out and I'm getting older. I see what happens when a mom dies at 82 or something and there is no provision for her child. It's terrible. Yet, here in Illinois, there really isn't any way to plan ahead. I worry about what happens if he doesn't die first. I worry about how I will continue to live without him if he does die first. I can't imagine living without him.

Wow. That is a lot of work. Maybe I am not a wimp.

But there are occasional days when I am too tired or too depressed to do his machines, or only do them once instead of 2 or 3 times. There are days when all he will eat is Ensure and I give up and take him out to IHOP because I know, nutritious or not, at least he will not go to bed hungry.

For 27+ years I have struggled with the question, "Is it really okay to take a break?" "If/When he dies, will it be because I missed a treatment here and there?" People are always telling me it is important to take care of myself. I see the logic of this. Where would Sam be if I got sick or died? Sam himself knows how important I am and worries if I seem to be sick or if I walk away from him in a public place. But the fact remains that every instant I spend on myself is time I didn't spend on him. What is the cost of that?

Dysphagia

It's always a challenge to figure out what to feed Sam. He doesn't chew and he has all these aspiration issues. Food goes up his nose and down into his lungs if we aren't very careful. So I puree everything and thicken liquids. But he doesn't like food that looks different from everyone else's or is just plain grey and no fun.

Tonight we had Panda Express. You get two entrees and one side per person. So that makes 6 different entrees. I split them up so we each had a bit of each of these. I ordered one side of rice and two steamed vegetables. For Sam, I made a big platter with steamed rice in the center. Then all around the outside I had a little bit of all the different things we had. I ground them all separately and spooned them over the rice. It looked very fancy and delicious. Each entree had a little bit different color.

When something is too dry, I add a little bit of half and half and it gets nice and smooth. Calories are not his issue...

He was very interested and happy to eat with us!

Mom of a Kid with Profound Disabilties

Ok this is hard. It's the second week of Program/School and with my eternal optimism, I filled it with appointments for ME thinking I would surely be free to do things without my sidekick. Last week he only made it to program one day because his sleeping patterns are way off and he had too much fluid in his lungs.

Rosa, the aid in his room, is a very nice woman who is convinced I'm over protective since he is always healthy and cheerful on the days I take him. She always says, "See? He is FINE here. He LIKES it here. He ate really good and he laughed all day long." So I wonder if she's right. Maybe I should make him go more often. Plus, they only get paid on the days he goes and they are really hurting for money in this crummy state, so I feel bad about that.

Yesterday was all about me. I took him to Esperanza and went to have my hair done. It was awesome. I really love my new hairdresser and going to her is the ultimate luxury in my life. When I went to pick him up, he smiled dimly at me and put his head down and went to sleep. Rosa told me all about what a great day he had, but all I could see was his blue fingernails.

But I had an appointment at Costco to get my new hearing aids. So I took him to Starbucks, which he loves, and bought him some caffeine. That sometimes perks up his lungs a little until we can get him home and hook him up to the oxygen. Then we went to get my hearing aids. (Which are going to take some getting used to, but I'm really excited about. They match my pretty hair!) Then I thought we'd pick up a few things since we were there. He was NOT happy about this. He grumbled and complained all the way around the store. He also stopped to sample snacks at every station throughout the store. So I thought he was just hungry. We bought a minimum of stuff and came straight home. By this time he was making the very loud, distressed honking noise he makes when something is really wrong. But he wouldn't eat and he wouldn't settle down.

His oxygen was not that low but he did have a junky cough. What are they feeding him at school? Is he aspirating? Rosa says that he drinks a lot of tea. Is he aspirating it? Are they feeding him carefully when he eats so much? He doesn't really care how much he aspirates or how much food goes up his nose. You have to watch him. And he is already having trouble with his lungs lately. (Allergies? It does seem to be worse in early fall and late winter) Or is his "laughing all day long" actually that manic laughter that is really a desperate plea for help? He gets this weird out of control laugh when he is upset about something or really worried about something. Do they know that?

Bath, chest vibrator vest, nasal spray, nebulizer, chest PT, dinner, more chest PT. Nothing helps. 10PM I rip the hearing aids out. The honking is really getting on my nerves and I certainly don't want to hear it as loud as the hearing aids make it. 11PM still honking. Oxygen getting lower. I hook him up to the oxygen machine and keep checking. I put soft music on the IPod and hook him up to that, too. Still honking. 12:30 AM we're both exhausted. I notice he is rubbing his feet together as if they hurt him. Could it be Athlete's Foot? He gets that a lot. I put cream on his feet and he sighs deeply and changes his tune to his (also loud and annoying) going to sleep hymn. 1:30 AM still singing but much softer. I give up and go to bed.

So it's almost 8 AM now. I have to decide what to do today. I have a dentist's appointment. I broke a tooth almost a YEAR ago and I really need to get it fixed. I can't take him with me to the dentist appointment. He really freaks out when we go somewhere and I am the patient. He doesn't like knowing I'm vulnerable. Well, you can imagine why. He knows he'd be in really big trouble if anything happened to me! (There's another blog topic - what happens when something happens to mom?)

So obviously he was in major crisis of some kind yesterday. Was it a lung crisis or an Athlete's Foot crisis or both? He's sound asleep with his head hanging over the edge of the bed now which usually means he's having trouble with his sinuses. Do I get him dressed in his sleep, grab an Ensure, drive through McDonald's and take him to Esperanza? He will probably sleep most of the time. Or should I just let him sleep here and give him extra machine treatments at home? And reschedule the dentist - again.

AM I over reacting? Or am I UNDER reacting because I'm selfish enough to want a new, expensive crown in my head. (Hair cut, hearing aids and now I want a crown. And I don't even have a job! Next I'll be eating bon bons and watching soap operas) Magic thinking: am I somehow causing his distress because I feel guilty about being so selfish?

Well, writing all this out helps. The problem is that last night is a fairly common sort of night around here. So I get to taking them for granted. I think of them as practically "normal". But when you look at it objectively, what mother in her right mind would send a kid to school after a night like that? It really doesn't matter what Rosa thinks of me, I'm in charge and I'm supposed to be the expert on Sam. Sam is my job. The buck stops here.

I am so grateful for my dentist and his wonderful receptionist. I know I can reschedule and they will be understanding. I need to give Sam some extra treatments today and watch him to see if I can figure out what is going on. The crown can wait. Again.

Sam's Health Issues

I spend a lot of time and energy pretending we're just like everyone else. Sam may be short, but he's other wise normal. But that's just denial. It isn't normal for a mom to change her 27 year old son's diapers for one thing. It isn't normal for a 27 year old son and his mom to have such a GREAT time singing along with Elmo. Every year we have what's called a "Staffing" at Esperanza and it starts with a conversation about his strengths. The first thing mentioned every year regardless of who is participating is his smile. He really warms a room. The second is usually something about his delight in buttons and things that vibrate.

He misses about half of the school year because I just can't get all the things balanced that are required to keep him healthy. So just for a minute, I'd like to "go public" with what I have to do every day to keep him going. First of all there's food. I have to puree every thing and thicken most liquids before he gets them. But he doesn't like baby food or food that looks or tastes boring. So I have to figure out ways to make pureed food look good. We also go out to dinner a lot because he always eats well at restaurants. There's a limited amount of things he can eat at restaurants. He usually has a cheese omelete and pancakes drenched in butter and syrup. I make sure he gets 3 Ensure or Boost a day.

I change him, dress him, brush his teeth, wash him and clean up his messes. I try to figure out things to keep him occupied besides watching videos and sitting on his bed all day with a vibrating toothbrush. He WILL sit on his bed and drool with a toothbrush unless I motivate him to do something else.

His medical issues require several machines to keep him going.
First: Sleep Apnea. He needs to get at least 4 hours of good sleep in every 24 or he will get very sick. Unfortunately, it's usually somewhere between 4 am and 1pm. I've been trying to adjust this pattern his whole life with only partial success. We tried all last year to get him used to the bi-pap machine in the hopes that this would help him sleep more. I tried putting it on him when he went to bed. He would wear it until I left the room. I tried putting it on him an hour after he went to sleep. But that meant staying up until he went to sleep. And he doesn't go to sleep until early morning. So I tried going to bed and getting up at 4 am and putting it on. He wore it for a while, but it was always off when I got up at 6. So I tried putting it on at 6. This worked for awhile. But eventually he just started getting up at 6 with me. So I went back to getting up at 4 and he got so he would rip it off the instant I put it on him. I leaving the machine (which is very loud) on with out putting it on him for a couple of nights and then putting it on him again. But he still took it off the minute my back was turned. I started seeing snakes in the corner of the room and crying at nothing at all and basically losing my mind from lack of sleep. So now I check his oxygen at night and if it's low, I put him on oxygen all night. He tolerates that okay. I also check it at 6 am to be sure it isn't low. It is usually fine. I want it to be between 89 and 95. If it gets too high, the brain thinks it can stop breathing and that makes the CO2 levels go up.

The biggest danger from sleep apnea is the CO2 blood level that develops which can actually kill you if it gets too high. He recently had an arterial blood gas test which showed that his CO2 level is the same as it was a year ago. I think this means that there's no point in continuing to try to adjust to the bi-pap machine and I'm going to ask the doctor if we can get rid of it. Then we can go back to the same problems we've had his whole life - which in retrospect were better than this last year when I was trying so hard to fix them! I think his CO2 levels have been gradually rising over his entire life and we should continue to monitor them. When and if they get significantly higher, we'll re-address the bi-pap machine and even consider a respirator that connects to his throat at night.

Second: Bronchiectsasis. He frequently has so much mucus that he can't breathe and gathers in huge quantities in his lungs making it difficult to breathe and easy to develop pneumonia. This is not cystic fibrosis but it is very similar. We don't know why he develops so much mucus. We have a number of machines to address this problem and they must be done in the morning when he wakes up and at night before bed and sometimes when he gets home from school. Going through the whole routine can take 30-45 minutes. But even when I do them faithfully, he still gets too much mucus sometimes and then I have to keep him home to monitor him. We have a nebulizer through which we give him medication to open his lungs up and make them stronger. We have a nasal wash machine and we have a chest vibrator that was developed for children with cysctic fibrosis. We also do a lot of manual chest PT. We have a suction device to help when he's got stuff stuck in the back of his throat. (Mostly mucus)

Third: Aspiration and swallowing difficulties. We had a swallow study done this summer and discovered that WHEN HE IS FED CAREFULLY he doesn't aspirate food. Obviously, aspirating food into his lungs is a very dangerous thing because he already has challenges in his lungs. HOWEVER if he is given thickened liquids or liquids in a commuter mug or sippy cup and purreed or very soft foods, he doesn't aspirate. Cake and donuts must ALWAYS be made soggy before he eats them. He must not have anything "crumbly" because it is easy to aspirate. There is a Mexican cake called Dulce de Tres Leche that is the perfect consistency. I always think of that cake when I am adding liquid to his cakes. For example, when we go to Starbucks, I order him a Traditional coffee Cake and a Mocha frappichino in the bottle. Then I pour the frappichino into the coffee cake until it is soggy. It tastes like Tiramisu and he can eat it just fine.

Food does go up his nose if he has more than about a teaspoon full of food in his mouth at a time or if it is the wrong consistency. This means more mucus, infected ears and possibly aspiration into his lungs although this has not been seen in the tests. Again, careful monitoring of his eating is essential. We are considering botox treatments to decrease the amount of saliva in his mouth hoping that helps. But insurance may not pay for it.

So he gets sick when his lungs are compromised by aspiration or just an accumulation of mucus or when he hasn't been getting enough quality sleep. He also gets sick when his weight goes below 75 pounds. (This makes my grocery shopping odd - I buy low calorie, low fat stuff for me and the opposite for him. And try not to eat his food!)

I also take him to Target and we look at stuff for hours and then we meet Eileen at Starbucks. See, it's not all work and no play!

Okay. So I've said it. Now I'll go back to pretending this is just a lot of fun.

My Take on Sara Palin

As the mother of a son with profound disabilities, I was initially thrilled to hear a woman say she, as a fellow mother with a child with disabilities, would be my advocate in Washington. The world needs people like us in power. There would be less war and more compassion. I am a firm believer in all mothers who work. Mothers and fathers of children with disabilities have already made a huge difference in the world. They have not only fought long and hard to make things better for their children and for the rest of the population of people with disabilities, they have worked to make this a more just and humane world for all of us.

But the next day I saw a picture of her with her baby on a magazine cover and started to have doubts. This child is an infant! Governor Palin has more experience in Foreign Policy than she has as the mother of a child with disabilities. Her foreign policy experience is based on trade negotiations with her two closest neighbors, Canada and Russia. And she's been doing that for several months longer than she has been the mother of a child with Down's Syndrome!

I would be a lot happier if this child were older and I knew this family had successfully faced the challenges that are clearly on the horizon for them.

My concern is more than "Walk the Walk before you Talk the Talk." The first three years of being a parent of a child with disabilities are hell. Parents and siblings have to come to terms with the profound way in which the core of their lives will change. There is a deep grieving process that must occur if the family is going to come to a place of acceptance and move forward into a very different future successfully. There are an endless stream of questions that must be answered, doctors and physical therapists and other specialists to be consulted. Children with Down's Syndrome often have medical issues that need to be addressed in the first few years. There is also the problem of dealing with the confusing issues of aid. How much financial assistance will the family require and is it available? What kind of in-home assistance will be needed for the extra care required? There is a seemingly endless stream of helpful people who suddenly think
they have the right to invade your private life whether you have invited them in or not.

It sounds like Gov. Palin has a very supportive husband who will have to become the primary caregiver and advocate for their child. But even though I took on that role for our son, I would have been lost if I hadn't had my husband close by to support me and co-parent. I can't imagine how Mr. Palin will manage if his partner is on the other side of the continent!

There is rage, confusion, sorrow and guilt to be faced and every day seems to bring a new insurmountable problem. Many marriages do not survive this initial period. Many careers are lost simply because the stress from home is too great. Someone who has already dealt successfully with this process might very well be transformed into a person who could change the world.

There are many women I would like to see in Washington. I think, after tackling the difficult journey of becoming the mother of a child with disabilities, Sara Palin might someday become one of them. But right now, I think it is really too bad she didn't blink.