Chapter Three

When Sam was young, people regularly gave me a copy of "Welcome to Holland" - an essay by Emily Perl Kingsley on what it is like to give birth to a child with disabilities.  It is a wonderful essay and you can find it here:
Welcome to Holland

Someone also gave me a book written about the same time called "Hope for the Families" by Robert Perske and illustrated by Martha Perske.  30 years later, it's still in print and available at Amazon.com.  The illustrations are beautiful.  One of the very first things he says is "Accept the fact that the 'child of your dreams' never was and never would have been.  All parents must acknowledge this sooner or later.  Your problem: You must do it sooner."

Sam wasn't what I was expecting, but he was pretty terrific.  No one gets the child they were expecting, life just doesn't work like that.  These two thoughts helped me come to terms with the reality of being Sam's Mom and got me started on our wonderful 33 years together. 

Chapter One of my life is the 30 years before Sam was born. Chapter Two is the almost 33 years we spent together. Now, if my mother is anything to judge by, I may have a Chapter Three! She's 86 and beginning to consider slowing down.

My plan, once I got used to the idea of being Sam's Mom, was that he would die before me but close to the end of my life.  Then I wouldn't have to wait very long to join him in Heaven.

Once again, life has thrown me a curve ball.  

This is rather a shock.  I knew in my head that he was dying, but I really didn't believe it in my heart. In the last couple of years, I did try to look ahead and make a plan for surviving him, but I was too busy taking care of him to really think ahead much and it felt like giving up.  And, honestly, I can't imagine a better way to spend my days than being Sam's Mom.

Only suddenly, unexpectedly, here I am, Sam-less and healthy.  Four months and counting into my new life and I'm ready to look around and figure out what to do with my days until I see my boy again.

It's not what I was expecting, but it's got some rather intriguing possibilities.

No one gets the life they plan on.  Life just doesn't work like that.

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.