Saving Sam (Chapter 3.05): Prologue - 10,139 days before

It had been a very cold day.  Unseasonably cold, even though we were already in early December.  And it seemed to be the worst day to traverse into the mountains to be "natural" Christmas revelers.  Why go to a Christmas tree lot when you could go up to a tree farm, pick your favorite out, pull the chainsaw, and act like the Griswold's before their famous Christmas vacation.  And as a complaining little 7 year old, I'm sure I wasn't the easiest or most helpful participant in the family tradition.  It probably made it a bit more difficult that I wasn't with my parents.  No, my grandparents were dealing with a little, cold child who wanted to play with toys as opposed to walk through a foot of snow.  But this was the last day of one of my regular weekend overnights at my Grandparents, and with the coming Christmas holidays, the kid inside the kid couldn't be too mad.  After all, he would be going over to his cousin's house after the tree had been picked and there would definitely be toys.

I still marvel at the things I remember of that day.  I do remember the chill.  And I will never forget legos.  Because that was my toy of choice.  My cousin and I headed down to his basement and room soon after we arrived home from getting a Christmas tree.  I was warming up and we were perusing the games, toys, and other activities that would hopefully entertain us until it was time to go home and see my parents...and my brothers.  Despite being cold, I was in heaven on a weekend overnight.  Because they were always fun.  We'd start on a Friday, usually at dinner at my parents house, with Grandma and Grandpa in tow.  We'd head in and I would fondly drop my bag off into the back room.  My Grandma had usually pulled the hide-a-bed out.  It wasn't comfortable, but it was comforting.  I'd go to bed, knowing that the next day would include a trip to Grand Central (which would eventually become Fred Meyer...and then close) for a $5 toy.  I'd then get a choice - a movie or miniature golfing (well, at least in the summers).  Sunday would probably include church, but I was more excited about having waffles for breakfast.  And when I was at church and getting bored, my Grandma would slip me a consistent stream of Starburst...which I would use on the edge of the pew and pretend they were cars on a roller coaster.  This was my routine.

Special weekends included the trip to my cousin's for Sunday dinner.  Holiday seasons led to more special occasions, including Christmas shopping (hey, maybe more than a $5 toy at Grand Central!), Christmas tree hunting, or something else unexpected.  So this weekender with Grandma and Grandpa, full of the trip to the store, most likely a movie, laying on the floor listening to Christmas music with my Grandpa, a hunt for a tree, and playing at my cousin's.  I was probably getting sad.  The weekend was ending, but I'd be damned if I didn't get some playtime.  I didn't even hear the phone ring.  I was too busy trying to figure out how to drag the large tub of legos up two flights of stairs.

I didn't hear the weeping as I headed up the first set of stairs.  But I was clearly making noise, dragging the tub up the stairs because at the landing, my uncle asked me to come see him.  Okay, fine, but I was bringing the legos with me.  At the top of the stairs, my subconscious was taking in the scene.  Marc, my uncle, was sitting in a chair in front of me.  My Grandmother was in the kitchen, turned away, on the phone.  My Grandpa was at the kitchen table, his head in his hands.  Marc beckoned me again.  He was upset.  He looked like he was crying.  I was oblivious.  It seemed important to me to bring the legos to his feet.  He pulled me up on his lap.  I got turned around, so I could now see my Aunt.  She was crying.  I glanced over to the kitchen.  My grandma's profile was now visible, and while I couldn't see tears, she was speaking in a hushed tone.  She was upset.  Before the words left my uncle's lips, I was still focused on playing with the legos.  Hopefully this would be quick and I could get to building something fantastic.

But then the words were spoken.  And my world changed.  Crumbled.  Became a bit more dark.  Jeff had died.  Jeff was gone.  I was alone.

Jeffrey Neal Pierce was born on February 11, 1971 to Gayle and Dave Pierce.  A beautiful little boy, and my parents first.  So small, so precious, so late.  Sometimes it is hard to think back and realize that my parents are where Elisa and I are now...in the throws of establishing and raising a small family.  But for them, it was all about Jeff.  Their new light in the world.

And then their world changed.  Because soon after Jeff was born, my parents received life altering news.  Jeff was Down's Syndrome.  For those of you blissfully unaware, Down's Syndrome a genetic disorder also known as Trisomy 21.  In short, each Down's Syndrome child has part or all of a third copy of the 21st chromosome.  For those who have never experienced the wonder of a Down's kid, you would categorize them as intellectually lacking, with specific facial characteristics and a litany of potential health problems.  But to say that is what a Down's kid is would be like saying the Earth is a tiny little blue planet.  Sure, it's true but the majesty of the Earth would be grossly ignored and diminished.  All of the "clinical" descriptions of Down's Syndrome are generally true.  But they are so much more...life altering, if you will.  A Down's kid is the embodiment of purity.  A heart so large that they have room for their deepest detractors and bullies.  A spirit so full that joy is found in the living, rather than the quality or length of it.  A world view so tolerant that someone could spit in their face and they would respond with a hug.  And a hope that the world was like that old Coke commercial - where all could join hands in perfect harmony.

Back in the seventies, Down's Syndrome, however, wasn't viewed as a challenging gift.  It was a problem.  It was something that could be avoided or shunted to the side.  Doctors actually assumed that my parents would want to institutionalize Jeff because of the stigma and struggle that was sure to follow.  Maybe some parents would have chosen that route.  Not my parents.  Jeff was theirs.  Jeff wasn't going anywhere.

You would have thought that my parents had inherited enough for a lifetime.  The news would have rocked any parent, but the idea that their first child had such a significant genetic disorder must have been agony.  Love for the little baby.  Sorrow and sadness that he wouldn't live a normal life - that he would need care and attention at every turn.  He'd develop slower.  His future was uncertain, and he was being born into a society that still viewed Down's kids as lesser citizens.  And the world embraced this belief.  Whenever there is anger and outrage at a racial slur being used, I think of Jeff.  When a gay man or lesbian is called a derogatory term, I think of Jeff.  Jeff was caucasian.  Jeff wasn't, for all I know, gay.  But words like "dumb", or "retard" get tossed around so easily in society, the group that can't defend themselves (or go onto CNN, YouTube, or the like) just smiles back.  No hate.  No anger. Just love - love born from not knowing anything more than the fact that human beings are human beings and deserve to be loved and love in return.

Yet, while Jeff slowly blossomed into everyone's favorite person and life lesson (more on that later), my parents weren't done.  They approached 3 more pregnancies with utmost trepidation, performing Amniocentesis to see if another Down's kid was in their future.  They brought home 3 new boys...all healthy, all normal (well, Elisa will disagree with me and normal being in the same sentence, but that's another blog).  And then they got walloped again.  Jeff didn't have a strong heart - it is a common occurence in Down's Syndrome.  He had a hole in his heart and would need a heart and lung transplant.  But they didn't do those surgeries for Down's kids back in the day.  No, they weren't worth the time, effort, or organs.  So while my Mom and Dad were raising an angel and 3 little hellions, they were faced with their own Dr. Doom incident.  Only theirs never had a chance to turn around.  My parents were told that Jeff wouldn't live past the age of 12.  Their special child with special needs wouldn't get to be a teenager.  He would die before.

As an adult, and with the onset of our own experience with Sam, I can't even imagine the courage, strength, and love that had to be infused into my parents each day.  If it were me, I'd wonder every day that I woke up if something terrible would happen.  I'd watch days and months fall of the calendar in an endless march towards Jeff's twelfth birthday.  Yet, they continued on because they had to.  Jeff dictated it.  Their other children dictated it.  The thought of what to come was too horrible to even imagine or contemplate.  So they lived, through the oldest cliche of all time - one day at a time.

Jeff made it through his twelfth year.  And his thirteenth.  He celebrated his 14th birthday in February 1985.  Winter turned to Spring.  Spring warmed to Summer.  And Summer cooled to Fall.  As we neared another turn of season and cold air and snow rolled in, my parents kept taking care of Jeff.  And their other kids.  Without fail.  On December 8, 1985, like every other day, they got out of bed and got ready.  Except Jeff wasn't feeling well.  He didn't feel like going to church.  So my parents got him set up and resting and took one of my brothers to church.  I was busy trudging through the snow to find a Christmas tree.  When they got home, my Mom found Jeff.  He was laying on her bed, with a paper and pencil so that he could take down messages if anyone called.

The next events happened quickly.  Calling 9-1-1.  CPR.  Taking Jeff to the hospital, and finding out that he was indeed dead.  Saying goodbye in the cold of a hospital room.  And then calling the family - namely, my Grandparents while I picked out my legos in the basement of my cousin's house.  In my life, there is before Jeff and after Jeff.  Before, I was a little kid with few cares in the world.  I was learning about tolerance, love, and a never ending grace.  After Jeff was gone, I was fearful and didn't understand.  I remember driving back to my parents and my Dad waiting for us at the bottom of the driveway.  To that point, I never remember seeing my Dad crying.  He was today.  He held me tight.  And I walked into a house that felt too empty.  The following days meant a struggle to walk up to the casket to say goodbye.  I thought Jeff was asleep.  I thought he was pretending.  I had bad dreams.  Nightmares so pervasive that I had to start sleeping with my bedroom door closed.  I'm 35 years old and I still need that door closed.  I can't sleep for a second if it is open.

Yet, I always viewed my experience with Jeff as something that taught me so much about life, and that is true.  I found tolerance in Jeff.  I found the constant need to love what you have and the life you life.  To embrace the quiet kid in the corner as opposed to make fun of them.  I tried to be friends to people probably not as focused on being my friend out of a desire and need to be wanted and a part of something.  I realized the importance of love and selflessness.  And, to this day, I realize that the world can be viewed through the lenses of reality, or through the eyes of a pure soul departed too soon.

What I didn't realize was that Jeff was in my life for an altogether different lesson.  I figured he'd continue to dominate my life.  I just didn't realize that the greatest lessons Jeff could teach me wouldn't be taught for 10,139 days.  Jeffrey Neal Pierce died on December 8, 1985.  Samuel Ryan Pierce was born on September 11, 2013.  10, 139 days.  I was ready to learn.

Over the first 5+ weeks of Sam's life, Jeff's lessons have continued to feed into me.  But they were the lessons, not of Jeff's life, but of my parent's devotion, trials, and tribulations.  When Samuel was taken away from us and into the NICU, my Mom and Dad were the first I contacted.  Not just because they were Grandma and Grandpa.  But because somehow, I knew they would understand.  As Sam toiled away in St. Mark's, my parents headed up every day after watching the kids.  They would sit with him, talk with him, and keep Elisa and I focused on our other kids and on giving Sam the love that he needed.  When we came home for two days, she brought me the food and support that I'm sure countless others had done after Jeff had left us.

And when Dr. Day broke the news that Sam could die, I called my Mom immediately after.  I cried in pain as I told her what the Dr. had said.  I asked her to share the pain and information with my Dad.  And I cried into my cell phone, not wanting her to tell me that it was okay, but mutely pleading that she could tell me that I would survive the loss of my child.  I knew, in my grief, that she had been in my shoes some decades before.  And there was an unspoken understanding in her voice.  She knew the pain - and it was a pain only those who have been through the experience will ever know.   The next day, she brought the boys to see Sam.  She hugged me without comment.  She told me that we would survive.  We would get through this, no matter the outcome.

Next time, I dig into what my own experience was like in the days and weeks that followed Jeff's death, and how, 30 years later, they'd place me at the unlikeliest of doors.