Perfect Storm

"And so, girls, we come to the Twelfth Station.  In this picture we see Jesus dying on the cross.  Standing by him is his Mom. She is so sad but so proud because she knows her son never did anything wrong but he chose to go through this terrible day because he was such a brave man and so full of love for you and me and everyone."

As I explain, I feel so many emotions. I'm once again proud of my own brave son who never did anything wrong and suffered so much so he could stay with me. I feel not only my own deep sorrow because he is gone, but I feel a connection to Mary who must have felt so much like me but more - more pride, more pain, more horror. After all Jesus died a public and most horrific death. My darling boy died peacefully, surrounded by love. 

And I feel anger because he is gone and my life is so emptied that there is almost nothing left of my life. He was my occupation and obsession every moment.  The soldiers divided Jesus' few possessions among them. I'm stuck with a mountainous pile of medical supplies, toys and clothes that must be divided up and I am the one deciding who gets what. So much that was precious became junk in the instant of death. I know much of it is precious to someone else struggling to care for her child. If I could only find that mom! I am angry that I have to deal with this.

And I am angry because in the four months since he died, we have lost two beloved pets!  Why am I surrounded by death? It's not fair, why me? These are questions I thought I had left behind long ago. They are still and always unanswerable but I am asking them. Again. Sigh. I am angry with myself for needing to torture myself with these pointless questions again.

But my two friends, ages 5 and 7 are looking at me expectantly. I pull myself together and go on. "When we look at this picture, we feel sad because we know that Jesus chose to let this terrible thing happen because he loved us. And we are sorry for all the times we have made him sad. He loves us and wants us to be kind and loving and thoughtful. When we are not, he is sad and we must tell him we are sorry."

Movement to my right catches my attention and I turn to see an angry face. Old, bent almost in half and furious, a woman clutching her pink plastic rosary is glaring at me like a cartoon witch. Charley moves to speak to her. She gestures furiously and he nods politely and comes back to us.  "We need to be more quiet."  

Okay. We were trying to be quiet, but we can try harder. 

I continue in a lower voice.  "Next is Station 13.  When they were sure Jesus was dead, the Roman guards let Mary and the others take him down from the cross and get him ready for burial.  They washed his body and dressed him in clean clothes."

Suddenly I remember doing the same for Sam. He turned green so quickly once he stopped breathing. Was that because of the infection or does everyone turn green?  His body was cold on top, but when we turned him to get his clean clothes on, it was still very hot underneath. We put him in a sweatshirt that said "This is what AWESOME looks like" and tucked his favorite toy in his pocket. 

Did Mary stick something special in with Jesus before they rolled the stone closed?  I bet she did.  I wonder what it was?

The angry woman circles around glaring at us again and approaches from my left this time. She is simply furious. "We have finished with the Stations of the Cross!  I don't know where you were when we were doing it, but you are too late. People are trying to pray and you must leave!"

There are so many things wrong with this that I am momentarily stunned. It seems so ridiculous!  I wanted to say: 

We were there earlier and did the Stations with the congregation and the girls had a lot of questions. 

I asked Father if I could take the girls around again to explain it to them and he was delighted. He gave us a special blessing and prayer before he left. 

It's Good Friday, the church is open and people are encouraged to do their own private Stations of the Cross.  They have been announcing this all through Lent. 

It's a big church and we are talking quietly and there are at most five other people in the church and they are no where near us.  

We are already at Station 13, we won't be much longer. You need to sit down and pray for patience.

Jesus said "Let the children come, for the Kingdom of Heaven is made of such as these."

Instead, I pick one of the worst replies possible. I say "I am sorry you are feeling cranky."  That did not go over well, naturally.

"I'M NOT CRANKY!" She loudly insists, glaring up at me with a twist of her neck that was probably painful. 

Now I am getting embarrassed. We are becoming a spectacle and this is pretty much exactly NOT what I wanted to teach the girls. I try to placate the angry woman, I try to feel pity, but she keeps interrupting me and talking louder and louder. 

Already emotional because of my own personal connection with the death of precious sons, I lose my temper and whisper through gritted teeth "I am TEACHING them to PRAY!" We are now two Harpies staring each other down across a battlefield littered with the scraps of my ruined Spiritual Exercise.

"Well you are teaching them WRONG!" She shouts over her shoulder as she retreats across the altar and out, slamming the door.

Aghast at my lack of self-control, I turn back to my youthful charges, whose eyes and mouths are gaping wide, and pull myself together. "So. Whenever we do something that makes Jesus sad, we should tell him. For example I had no business getting mad at that lady and so I need to tell him right now that I am sorry and ask him to forgive me."

Later, Charley summed up the experience: "It was a God Moment. The whole point of Lent is to be confronted with our sinfulness. You certainly were confronted by yours!"

I have no regrets about taking the girls through the Stations a second time. But I do feel very sorry for losing my temper and being disrespectful towards the angry woman. I made her carry the burden of all my anger, although she was most unwilling to do so.  She stormed out of the church bearing whatever her own pain is along with the extra burden of my anger. In that horrible moment, before the crucified Christ, she bore my sin. I'm sorry for this.  And I'm pretty sure Jesus forgives me, but she probably does not.  I'm sorry about that, too.

Living in the Now

I am struggling to understand this concept.  I do not think I have grasped the essential wisdom of it.  It seems to me that I live too much "in the Now" - tending to whichever crisis is shouting it's need at me most loudly.  Living in the current crisis leaves me with a distinct feeling of claustrophobia.  I do not have room to expand or plan.  I am reactive instead of proactive.

I have read many books which talk about the wisdom of living in Now, but I still do not really understand it.  Part of the trouble, I suspect, is the inherent responsibility of possessions.  I own a house with a roof, for example, roofs need to be replaced on a regular basis and paying for the roof is not something one does without planning ahead.  Where does future planning exist in "living in the Now"?

My chosen lifestyle requires a lot of "giving thought to the future".  I see how Jesus or Buddha or Richard Rohr or Thich Nhat Hahn or Ekhart Tolle etc. have arranged their lives so that they can accept what comes to them with grace and wisdom.  I admire that, but I do not see how I can emulate that.  I cannot take the advice of Jesus to the rich man and sell all my possessions and live the life of a mendicant.  I need electricity to run Sam's machines.  I like air conditioning and heat.  People in Chicago regularly die if they do not have one or the other.  I really don't want to lose Sam or to die myself simply because I didn't plan ahead and budget well enough to pay the bills.

When I look for peace, I rarely find it Now.  I find myself fighting to rise above the Now to get a clearer perspective.  Now is usually terrifying.  There are too many things that need doing Now and most of them seem to be begging me to instantly save them from destruction.  Everyone and every thing in my life seems to need me to do something Now.  If I do not step aside from the current moment and reflect on things other than Now, I descend into chaos.  I cope.  I react.  I loose track of what is important to me.  I lose track of me.

Stepping outside the stream of life, reflecting, planning, pausing, praying, ignoring Now, I find a modicum of peace and the space to untangle the threads that pull me out of shape.  I reform myself and can begin to make decisions about which threads I want to pick up and which ones I want to let drift away in the wind.  But stepping outside is hard.  I need to fight for my solitude - fight myself and my impulse to surrender to the demands of Now.   It is far too easy to allow myself to drift in the chaos of Now and be swept away by the expectations of the people and possessions in my life.

I am learning that "Yes" and "No" are the two most powerful words in my vocabulary and both need to be used with caution.   I need to pause, at least momentarily, and reflect before saying either "Yes" or "No".  When I am swept away by the chaos of Now, I give myself away without thinking and usually it is by saying "Yes" or "No" thoughtlessly.  I am too prodigal with myself when I live in the Now.

And yet, when I listen to these wise men talk about their concept of Now, I realize that they are talking about something substantially different from what I experience.  I think my failure must have something to do with a difference of definition.  I have trouble grasping what they mean.

I think they have a lot less need to feel control and a lot more trust in the universe or God or whatever they call it, than I have.  I do not trust God or the universe to have the same priorities that I have and so I feel a deep need to control or at least try to control at least some of my circumstances.  I realize that God/the universe is more powerful, capable and even ultimately more kind and loving than I am on a global scale, but it seems clear that we are not more important than the lilies of the field and our individual survival is not of paramount importance to that force/entity.  So my individual responsibility is to take care of myself, Sam and my little corner of the earth.  For that, I need perspective and time outside Now to think.

Clearly there's something I don't get yet.

Tweet

So now I'm on Twitter.  What a fascinating way to waste time!  I haven't really learned much about Ben, but I do know that Wil Wheaton passed his driver's test 100% and that a lot of people don't want Neil Gaiman to shave his beard.  His photo is clean shaven, so how do they even know he HAS a beard?  He points out that his beard is like Schrodeger's Cat - which I think is a good point.  


Chicago Tonight wanted us to text in our opinion on whether Rod Blago is guilty or not - and people did.  I don't suppose the judge or jury were listening.  Technology gives us such brilliant opportunities to display our ignorance.  The irony of saying this in a blog is not lost on me.


Then they interviewed a woman journalist who has written a  book about her experience caring for her elderly mother.  But, since she is a journalist, she seems to think she can extrapolate from her experience to that of every person caring for an elderly parent.  She made some pretty broad statements about how unfair it is that "society" still splits duties along gender lines - lawyer stuff to her brother, buying diapers to her - and that this is the case in most situations.  How does she know that?  You'd think a reporter would get some, you know, hard data before making generalizations like that.  But no.  She's just going on her own experience.  Which makes her book a memoir, which is fine, but it isn't news.


I'm crabby.  

This Modern World (by an old woman)

What does it mean when your son says, "I love you mom, you are important to me.  You should follow me on Twitter."?  On the one hand, by reading his blog, subscribing to his videos and pictures on YouTube and Flickr and following his Tweets, I am privy to his passions and thoughts.  I, along with the rest of the world, can know him more intimately than I know practically anyone.  But he still won't return my calls or answer my e-mails.  It's a one sided intimacy unless I also tweet and blog - and he takes the time to read them.  Even THEN it's not what I would call a relationship.  It's more of a narcissist's version of relationship.  "I imagine that the whole world is more interested in me than I am in them".  I can think of lots of psychobabble reasons why this is good.  Self disclosure, "I" statements.  But there isn't a real two-way conversation, just two separate streams of consciousness.


While I appreciate that my talented, overstressed son has little time in his day to day life to chat with me, I still miss our long, rambling conversations about nothing at all.  Who am I kidding?  I don't have time for those either.  


It was a rare and precious luxury to have him here the past few days.  We talked about the relative merits of the Tennant vs Brannaugh Hamlets, of Pyrimus and Dido and Cicero.  We talked about the movie "The Tree of Life" (which he saw and I didn't because Sam was too loud in his appreciation of the dinosaurs.)  We translated French songs, discussed European linguistics and demise of critical thinking.  We played music, badly and he and his Dad (and Sam) tried to teach me syncopation.  I showed him my garden and he showed me his new android tablet.   These are discussions that take hours without children.  Neither of us often have that.  It was wonderful.  We didn't spend much time talking about our problems.  We didn't really need to.  I feel closer to him than I have in years and it's like a piece of my heart has come home.  He's gone back to Portland now, and I've got to get back to my real life.  So I signed up for Twitter and I am following Ben, and, at his suggestion, George Takai, Wil Wheaton, Stephen Fry, and the Daily Show.  


Blogs and Tweets are better than nothing.  But rambling, pointless conversations are better than anything.

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. 

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?

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.

Jonah and the Whale

For some reason, several people have spoken to me lately about this Bill Maher movie on religion. Seems goofy to me. I mean, who cares what he thinks? He's cranky! But I did just waste half an hour trying to figure out what I actually think about Jonah and the Whale. I haven't thought about him since I was a kid! So I haven't even seen the movie and it's making me think. That's never a bad thing, is it?

So here's what I came up with:
"There's more in heaven and earth than are dreamt of in your philosophy, Horatio." Maybe it could have happened. But I don't really care! It isn't relevant. I don't think it matters whether or not there was a Jonah, let alone whether or not there was a whale!

Myth often brings us truth more profoundly than fact.

So the point of that story is not the whale. The point of the story is... well what IS the point?

More often than not, control is an illusion and safety a gift.

If God is trying to speak to you, it is better to listen than to run.

In this world, the answer to the question, "why" is usually silence.