Healing

I've been thinking about what we mean when we say "I'm praying for you". Is it like saying "How are you?" Is it, in fact, something we say by rote because it is polite and conveys a vague aura of general good will without costing much?

That would be bad. 

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