So, I posted a blog the other day about dementia, Alzheimer’s and Parkinson’s disease, and about legal planning for these horrible diseases.  In the blog, I posted a section of a poem that I wrote for my father.  Since I published that blog, I have received a handful of requests to see the entire poem.  Let me start by saying I’m a very private person and have never published this poem in public before, so this is way out of my comfort zone.   But I’m also a big believer that you grow in every way by stepping outside of your comfort zone.  Here is a little background.

My father and mother were both teachers and raised my two brothers and me in a happy, active home (although probably a little loud with 3 boys running around).  My father was diagnosed with Parkinson’s disease at a young age and he battled Parkinson’s for 17 years before losing that battle.  I spent his last ten days sleeping on a cot next to him at a hospice house, playing music that he loved and talking to a man with a mind but no voice. During that time, I wrote this poem about my father, growing up, and his transition from healthy to frail. . .

Your Shell, Your Soul

Fastball smacking the catcher’s glove, batting practice;

More than a ballgame, building a bond.

Over the side of the boat, first one into the cold water;

Setting the anchor, to keep us from drifting.

Your shell and your soul, working together as one;

Teaching, guiding, growing.

 

Invincible, unshakable, the good times will last forever;

Rolling on the waves of Lake St. Clair;

Bat day at Tiger Stadium;

Summers in Muskegon, the Big Hill, Duck Lake;

Winter break in Florida, swimming, fishing, playing.

Letting us plant roots, at the same time giving us room to grow;

Your shell and your soul, climbing.

 

Then, heartbreak – only 18;

No father should have to bury his son.

Is this the first time I’ve seen you cry?

Shell weak, soul shaken to the core.

All you can ask is “Why?”  

We can’t go on;

But there is no choice, we must – we are a family, minus one.

 

Rebuilding, changing.

Whoever said “Time heals all wounds”,

Doesn’t really know.

Wedding bells, empty nest;

“I’m not old enough to be a Grandpa”;

But you are, and a good one at that.

Teaching, planting seeds and building bridges for the future;

Shell and soul, evolving, accelerating.

 

Then, a slight tremor,

A shudder, a shiver.

An enemy from within;

But still wit and confidence, inside and out.

Your shell . . . a crack? 

Your soul, still strong.

 

Tremors and shivers, turned by time into shakes;

Muscles stiff, unbending.

Before a step, a pause, a waver.

Knees and elbows tattered from trips and tumbles,

Black and blue, bloody, bandaged;

Your soul, caged inside your fracturing shell.

 

 “I’m fine”“I feel good”.

Laughing, joking.  Refusing to give in to the enemy.

An outward show.  But we know different;

And even though we know, what can we do?

While the cracks in your shell deepen,

Incredibly, your soul remains fearless and strong.

 

Hospitals, too many.

Aren’t they supposed to make you better?

Cruel for the shell, but worse, sickening for the soul.

On the phone, you say “I love you”, and “I’m proud of you”;

It can wait.  You can tell me in person when I visit, Dad.

Does he know something that I don’t?

 

The last hospital – your shell, crumbling;

Mind aware, eyes open, mouth silently screaming;

Soul trapped, begging for release.

Courage, character – I’m the one who is proud.

So many doctors.

How come they all say “There’s nothing else we can do”?

 

Holding hands, mine shaking, yours cold.

I’m here, Dad.  Don’t be scared.

We don’t want you to leave, but we understand.

You can let go.

Let your soul soar, free from your broken shell.

 

I think I’m staying, and waiting,

To say “Goodbye”.

But the longer I stay, the longer I wait,

The more I understand, I’m staying,

Not to say “Goodbye”.

But to say,

“I remember.  And I will never forget.”

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