His Last Act Before Leaving Me

His last act before leaving me

Our souls were knit together
We were one
He took that for granted

How could he not?
Bone of my bone, flesh of my flesh
Heart of my heart

Breath of my breath

Symbiotic
His thoughts linked to mine
Serene
His faith that I would always provide

My last gift to him was death
He opened his eyes
Grinned
And said
"No love, let your last gift be chai
Now I am ready to go"

It is finished,
In Beauty

Household Saint

As Sam dies, he is leaving Charley and me with a legacy of love and gentleness. We are communicating and working together better than we ever have before.

Today is our 40th Wedding Anniversary.  Last night my friend (who is a respiratory therapist I got to know during Sam's many hospital visits) stayed with Sam so Charley and I could go out for our anniversary. It was such a blessing!  We went to Ravinia and saw Tony Bennet. It was a beautiful evening and we enjoyed ourselves very much.  Because we don't know anyone who is qualified to watch Sam, this wasn't a "rare" event. It was unique!  And we enjoyed it very much. I'm so glad I married someone who enjoys so many of the same things I do. 

Sam perked up and entertained his friend so well. Once again he proved he is a miracle worker. She is going through the most horrible things in her personal life and he gave her peace. They played Concert for George Harrison and shook bells and tambourines along with the music and she sang in her "atrocious" voice. (Her word, not mine). She looked so relaxed and peaceful when we came home. It was actually a startling difference. She kind of glowed. Sam is a wonder. I wish I could get her to come sit with him more often. She needs him!  Or maybe it was George...

Porch!

I wanted this to be a record of my precious Sam and his influence on my life. But the last few years have been so difficult that I really didn't have the heart to record anything. 

Now he is slowly dying and I am so afraid of life without him. I have always said that it would be better if he died first because there is no place that would take care of him.  As he declines, that becomes more and more clear.  Even Hospice has concerns about whether or not they can help in our tricky situation!

His death will mean the end of my life as I know it. I spend every minute of my life, waking or sleeping, centered around him. It is my privilege. It is all I really want to do. But he will leave a pretty huge sink hole in my life. 

Death will be the first place he has ever gone on his own, the first place I haven't checked out first to be sure it is safe. Somehow my faith doesn't help with this. I know I should believe he will be somehow better after death, but honestly, I'm not sure. 

But today is not a good day for dying. Today we managed to get out on the porch and neighbors came to visit and play music. Today he managed to communicate very clearly with me and he smiled a lot. Today was a good day. 

Ars Moriendi

My Bright Particular Star is fading

And when he finally collapses into himself

I will be trapped forever in stasis 

Around his Black Hole

Already I feel stretched to infinite thinness 

By the infinity of his dying

Back in MICU

Terror Boredom Confusion

Old friends New friends Isolation

Good food Bad food No appetite

Questions with no answers

Anger Ecstasy Hope Depression

Gratitude

Rest Sleep deprived Familiar strangeness

Unknown

Blood Pain Recovery DNR

Lost and Found

Endlessly the same new approach

Elephant Bones

It was a dark and stormy night when Rep got the call.  An elephant had died at the San Francisco Zoo.  Could he come investigate?  Recent investigations into the death, by shark attack, of a 13 million year old paleoparadoxia (now renamed paleoparadoxia repenningi) had left him unsatisfied regarding the bone structure of the feet of these large mammals, so the elephant case intrigued him.  Sure.  He'd come.

As he drove north through the night in the kind of rain you only get on the sunny California coast, his headlights, wipers and brain were racing.  Would he find the answers he was looking for?  Or just more questions?

The keeper who met him seemed nervous.  The recently deceased elephant's mate had a bullet proof alibi.  He had been in the pen at the time of death.  But now the bull seemed intent on breaking out.  As they walked toward the scene, they could hear him crashing against the bamboo fence that separated him from his deceased mate and bellowing over the sounds rain, wind and surf.

The electricity was out.  They had to drive the station wagon into the pen and turn the head lights on the body.  As the bull continued to attack the bamboo fence, Rep turned to ask the keeper about tools for the autopsy.  He was met by a blank, frightened look.  He had no tools.    Fortunately, Rep had a few carpentry tools in the back of his "Woody" station wagon.  He began his work.  The bull became more determined.

Rep asked the keeper if the fence would hold.  The keeper replied that he thought it would,  but perhaps it would be best if they hurried.  He provided Rep with some large plastic bags for the "evidence" and together they loaded two of the feet into the back of the Woody. Then he began his long drive home.

Rep had met the zookeeper while he was a grad student at the University of California, Berkeley.  He was frequently the first to hear about strange deaths at the zoo and often given the chance to take all or parts of the deceased for his research.  In the beginning, he borrowed the weber grills from all the houses on the block and cheerfully cooked the meat off the bones.  Eventually he acquired a huge cauldron (big enough to cook a missionary) and set it up behind a bamboo fence in the far reaches of his back yard.  He decorated the fence with scary African Masks to keep neighborhood children out.  

The elephant's feet were his biggest specimen yet and too big to fit comfortably in the cauldron.  He left them in the plastic bags in the garage for a few days trying to come up with a sensible solution.  He didn't find one.  

Here's where I come in.  As his oldest child, I found the elephant feet in the garage completely fascinating.  A lot more interesting than the pet tarantula and the various snakes, not nearly as interesting as my best friend the raven, about the same as the pet skunk, bobcat and geese.  The other neighborhood kids and I snuck into the garage whenever we could to marvel at the ghastly sight.

I think that's what gave him the idea.  He bought a bunch of shovels and told us to "find China".  We cheerfully

excavated in the back yard for several days.  We had quite a good hole dug by the time Barbara Burkemper fell in and broke her arm.  At this point, the shovels were confiscated.  

Then the elephant feet were buried and almost forgotten for several years.  

But I was famous for being the only girl at my high school who had an elephant buried in the back yard.  

Today the one remaining foot of that elephant is in the Paleontology lab of Professor Chris Bell at the University of Texas at Austin where it continues to fascinate people.  

Global Tracheostomy Tube Awareness Week

This is Global Tracheostomy Tube Awareness Week.  Here's something I wrote for them:

Here's a poem I wrote when Sam was 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.

When Sam was born, I was confidently expecting a healthy, normal baby girl.  Sam wasn't any of those!  What was God thinking?

That first year my husband lost his job, we lost our apartment, we had to think of our 4 year old son, who was scared and confused, and Sam clung to life by a thread.  We took him to countless doctors and had to re-admit him to the hospital several times.  As he struggled to live, my faith in God began to erode beneath my feet.  I grieved the death of my dreams and the death of my imaginary daughter.  

I lost contact with so many friends and family members who could not understand what I was going through and had their own faith issues to deal with when God continued to not "heal" Sam.  I couldn't walk away.  I had no choice.  I was Sam's mom.  I had a job to do.  It wasn't a job I wanted, but it turned into a calling.

Fast forward 31 sleep-deprived, anxiety ridden years.  Sam is the delight of my life.  Anyone who takes the trouble to know him is transformed by joy.  Loving Sam has given me back more than I could ever imagine.  His smiles and his hugs give me strength and heal my sorrows and fears.  When I think about that mythical baby girl I wonder, what was I thinking?  I would rather be Sam's mom than anything I can possibly imagine.  This roller coaster ride has been thrilling.

Sam has Joubert's Syndrome.  We didn't have a diagnosis until a couple of years ago.  I think 31 years ago this diagnosis didn't exist.   It is diagnosed by a particular malformation in his brain called a "Molar Tooth".  I remember doctors telling me that he had an abnormality in his brain that looked like a butterfly, but they didn't know what to make of it.  So we stopped worrying about a diagnosis and just focused on giving him whatever he needed.  The neurologist quoted in my poem was pretty accurate.  He doesn't walk or talk or chew.  He is profoundly retarded and he is very short.  But he certainly thrives!  He attended Public School and made lots of friends.  At his High School Graduation, the entire student body cheered.  It was one of the proudest moments of my life.  He has been an active participant in our church and through him, I have found my way back to a newer, deeper faith in God.  People often stop us on the street or in restaurants and ask, "Isn't this Sam?  I met him at ... He is so wonderful!"

Sam has only had a tracheostomy a few months.  We finally agreed to it because he was hospitalized twice for pneumonia in 2012.  It had been over 7 years since his last admission.  Having a trach makes it easier for him to breathe and cough up mucus from his lungs.  It makes it easier for me to suction out anything he can't quite cough up.  It also gives us a way to attach a ventilator at night to control his sleep apnea.  

It is a mixed blessing.  He can't make noises anymore and I miss that.  It gets clogged fairly frequently which is very scary and could be life-threatening.  I have to take a mountain of medical supplies with me whenever we leave the house and I can no longer hire the kid down the street to watch him so I can get some respite and I have to always be with him - which isn't all bad!

And he loves his trach.  He touches it frequently and smiles.  He loves breathing through his neck.  Thanks to the trach, we get to keep our wonderful, miracle boy longer and that's the best part.