Milestones, Memories, and Just Getting By

21 years ago I was 22.  I was single, and a new teacher.  I was just out of college, finding my way.  I had a sister who was 25 and had just gotten married, and a sister who was 6.

I knew nothing of what life would have in store for me.  I knew only of a few wacky surgeries I had had.

I also knew of some scary times surrounding that 6 year old I loved a whole lot.

Sometime around my sister’s wedding, the little one starting complaining of pain.  When she volunteered to go to the doctor we were all stunned.

What followed was a blur, and a nightmare, and a million blessings all rolled into one.

There was this tumor, inside her spinal cord.  Inside.  By all rights, as my parents were shuffled from doctor to doctor, they were told the little one should not be walking.

Miracles followed miracles, and egos evaporated.  The system worked the way it should and she was placed in the hands of Dr. Fred Epstein, arguably THE top pediatric neurosurgeon.

Dr. Epstein cared for Kathi in the operating room, and he cared for her out of the OR as well.

I can remember visiting one day when he came in the room with these remarkable cowboy boots.  And he sat down next to her, and spoke to her before even addressing the adults hovered around.  He was a gifted surgeon, and a true gentleman.  He smiled, he laughed, and clearly loved what he did.

I knew that he had changed my sister’s life, well all of our lives, by being talented, and daring enough to get that tumor out.

I learned later he struggled in school and likely had a learning disability.  He had been told he wouldn’t be successful.  Someone forgot to tell his patients.

A well healed badge of honor.
A well healed badge of honor.

My sister swam for years, all through college, runs regularly, and has even finished the NYC Marathon.

I hope Dr. Epstein knew of his ripple effects.  I hope all of the really great ones know.  Because when it’s done right, medicine, surgery, compassion for others, it changes lives.

Kathi doesn’t have Cowden’s Syndrome.  And I couldn’t be happier about that.  She also no longer has a spinal cord tumor.  And that, well, that is pretty cool too.

My sister’s surgery is one of the many things that helps us keep perspective here.  Everyone suffers.  Everyone rejoices.  A diagnosis doesn’t really change that.  Everyone has something.

21 years ago, this doctor, and his cowboy boots, and his smile, saved my little sister’s life.

She has this tatoo on her, as a constant reminder of the wise words of this gentle, superhuman.

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“We may know too much about the unpredictable ways of the world to expect a happy ending, but we can’t help but hope for one all the same.” – Dr. Fred Epstein

Dr. Epstein suffered an unfortunate accident in 2001 that rendered him unable to operate.  He died in 2006.  The ripple effects of his work will live on forever, in my family and across the world.

Dates.  Memories.  Celebrations.  Gratitude.

Today we think of Dr. Epstein with thankful hearts.  Thankful for the memories he has allowed us to have, and for the ones we will continue to make.

September 22, 1995 - 2 months before her surgery
September 22, 1995 – 2 months before her surgery
April 14, 2000
April 14, 2000
April 15, 2016
April 15, 2016

All these things give us the strength to remain

#beatingcowdens

“There’s a bit of magic in everything, and then some loss to even things out…”

As I walked away from the pizza place, holding my girl’s hand, with tears streaming freely down my face the song “Magic and Loss” by Lou Reed crept out of my subconscious and began playing with frightening accuracy inside my head.  I have thought of the song from time to time over the last 20 or so years.  The album was first introduced to me by a dear friend soon after the passing of my beloved cousin “Angel Meghan” at the age of 6 in 1991.  As an elementary school teacher I have been known to “think” in books, but its more unusual for me to “think” in song.  It isn’t too often that a song “speaks” to me…

When you pass through the fire, you pass through humble
You pass through a maze of self doubt
When you pass through humble, the lights can blind you
Some people never figure that out

You pass through arrogance, you pass through hurt
You pass through an ever present past
And it’s best not to wait for luck to save you
Pass through the fire to the light

Pass through the fire to the light
Pass through the fire to the light
It’s best not to wait for luck to save you
Pass through the fire to the light

I have a brother.

Birth congratulations to my Dad and my brother’s Mom, Kelly would be overdue by about 24.5 years.  But I have a brother.  And I am damned glad I do.

I have always loved him.  Always known he was there.  Always followed the tales of his life from afar.  Always sent a card.  But, never really got to spend any quality time with him.  Knew he was well loved.  Knew he was tons of fun.  But never really got to KNOW him.  Not by anyone’s fault.  Life and circumstances have a way of getting in the way.

And then some time in November I had to make a phone call.  I had to call him in the middle of the life he established Texas, and tell him Dad was sick.  Quite sick.

I had known for a few weeks.  I had seen him in the ICU.  I knew about the jaundice.  I knew in my gut things were not good.  But it took weeks to get Dad to let me tell my sister the full extent of the problems looming.  Then finally he let me call my brother.

And while the weight of the guilt of carrying that secret was coming off of my shoulders, I knew it was delivering a crushing blow miles and miles away.

A few days to digest, and then another call.  “I think you need to come.”

And that was all I needed to say.

He stepped off the plane a few days later at exactly the most perfect time.  He parked himself right in Dad’s apartment and stayed.  He was there for those overnights that were getting a bit tricky – to say the least.

As you pass through the fire, your right hand waving
There are things you have to throw out
That caustic dread inside your head
Will never help you out

You have to be very strong, ’cause you’ll start from zero
Over and over again
And as the smoke clears there’s an all consuming fire
Lyin’ straight ahead

Lyin’ straight ahead
Lyin’ straight ahead
As the smoke clears there’s an all consuming fire
Lyin’ straight ahead

Dad was getting sicker.  Quickly.  And despite our initial desires to deny the reality, we knew that we were walking uncharted territory.

I grew up with two sisters -one older, and one younger.  We grew up understanding each other’s strengths and weaknesses, and working on love throughout.  Now I was in a different trio.  A different dynamic.  For a different purpose.  One none of us wanted to face – but we were there.  And the “All consuming fire” was “lyin’ straight ahead.”

We formed Dad’s “Team,” his three children, with whom he developed three distinctly different relationships through the years.  We took the best of what each of us had to offer.  We laughed at old stories.  We cried out of sadness and frustration, and anger and disappointment.  We held each other with gratitude for the man whose common link between us all had done wonders to bring us together.

Waiting for Dad’s procedure at Columbia Presbyterian – the one that was supposed to be 45 minutes, and was unsuccessful at 3 hours- we were all in quite a state.  My brother, aware of Meghan’s countless procedures at one point looked at me awestruck. “You do THIS all the time?”

Well – not quite THAT… but to some extent yes.

And there were times that we sat, each on our own personal hell.  Wondering, worrying, agonizing, reflecting, and above all desperately wanting to make it better.  We sought the magic wand… and realized it was already in place.

They say no one person can do it all
But you want to in your head
But you can’t be Shakespeare and you can’t be Joyce
So what is left instead

You’re stuck with yourself and a rage that can hurt you
You have to start at the beginning again
And just this moment this wonderful fire
Started up again

When you pass through humble, when you pass through sickly
When you pass through I’m better than you all
When you pass through anger and self deprecation
And have the strength to acknowledge it all

When the past makes you laugh and you can savor the magic
That let you survive your own war
You find that that fire is passion
And there’s a door up ahead not a wall

Dad’s struggles.  Dad’s worries.  Dad’s heartache.  His pain.  They were about to end.  He was going to be free from his broken body.  He was going to be free of his suffering and his pain.

But what about us?

I know all about the truth, and I believe deeply in Heaven.  But I am selfish.  I miss him.  I miss my sounding board.  My ally in all endeavors.  My confidant for the “blow by blow” struggles that were too tough for others to hear.

“There’s a door up ahead not a wall…”

We met at the cemetery today.  We stood for a while.  We cried a little.  We prayed a little.  We held each other a lot.  We know he’s not there.  He is in the crystal blue sky and the winds that blow, and in the hearts of all who love him.  But I admit to not shaking the selfishness.

We ate pizza as a family.  The conversation was easy and light.  Except when Meghan butted up real close to her uncle to talk about her biopsy Tuesday morning. Darned Cowden’s syndrome won’t cut her a rest.   She told him all about the arrival time, and the procedure.  She spoke like a pro – someone easily twice her age.

So much uncertainty.  So much loss.  So much worry.  So much… so soon.

She has taken an extra love to her Uncle Shane these last few weeks.  This whirlwind that took her Grandpa from her just as their relationship was budding, seems to have left her a pretty cool uncle to share some love with.

As you pass through fire as you pass through fire
Tryin’ to remember it’s name
When you pass through fire lickin’ at your lips
You cannot remain the same

And if the building’s burning move towards that door
But don’t put the flames out
There’s a bit of magic in everything
And then some loss to even things out

Some loss to even things out
Some loss to even things out
There’s a bit of magic in everything
And then some loss to even things out – Lou Reed

I have a brother.  And now I have to let him go.  But not far.  And certainly not forever.  For no one can live through what we lived through these last few weeks and remain the same.  There are experiences once shared that can not be forgotten.  There is respect earned that can never be lost.  The lesson, the reminder that life is fragile and fleeting remains forever.  I always had 2 sisters.  And I always loved them so.

But now, with an ache in my heart, and tears on my face, I have a brother too.

“There’s a bit of magic in everything, and then some loss to even things out…”

Photo credit -Meghan 12/28/13
With a “Smile” from Grandpa Tom