Memories of Buddy: Photo of the Day

As I write this today is my son's birthday  Though there isn’t a major milestone attached to this marker of his passing time.  Only 9 years since Tyler first arrived, it still seems to me as if it was yesterday.  I know that feeling of time passing and compression taking place.  Events that you swear weren’t that long ago, when viewed in years are many.

Buddy arrived into this world and I will selfishly admit to wanting my first born to be a son.  Though as I type those words I feel as if I am a character from the movie 300 for asking that.  I am the only son of an only son.  There is some sort of pressure being in that lineage.  Not put there, but just is.  I carry the name and the name is handed down and continued.  This no longer bother’s me, but at that time and that place on May 11, 2000, it did.  Life is different for me now.  Some of it because I am older and I like to think wiser, but much of these changes I believe are because of the mere existence of Buddy in my life. 

Truly life begins for Buddy and I on May 18.  His birth was met with elation and his death a mere 18 hours later, was met with the similar, but opposite feeling.  I have written to myself many times about those 18 hours and the emotional cigars I passed out at the birth of my first child and my only son.  I don’t know as I can properly express how exciting and amazing watching the whole opera progress before he arrived via C-section at 6:23pm.

Life takes many memories away, but it does not one iota dim my memory of those moments, feelings and visions, etched into my brain when I recall his birth.  The same can be said when the doctor strolled into the room and informed us of Tyler’s potential Down Syndrome diagnoses or “something else”.  The DS was scary enough, but the “something else” well what could that be.  He was there only 10 minutes to pass that information along.   The door closing behind him, without a question being asked and no time given to explanations or even to wipe the shock off our face.

May 18 though resides in my brain for a number of reasons though.  May 18 is my mother’s birthday.  It is also the realization day that my son was not going to have anywhere close to the life I had thought he would have and nothing that was going to even resemble “the plan” that resided in my head.  All of that would be gone and replaced with nothing.  No pages in this book, only blanks.

Being a perpetual planner with pages always being apart of my ongoing story, the lack of pages was the scariest event that could happen.  I knew how childhood was suppose to be or at least how I would want it, which no father ever gets, but wants to give their children.  It isn’t until later that they realize that their parents indeed had some wisdom, but we still swear we aren’t them. 

May 18 was when I looked into Buddy’s eyes and realized what I read sometime later was best described as the “ghost of Buddy.” This ghost existed more strongly then, but still is there today.  The Buddy that was in my head, the Buddy that resided there in my hopes and dreams, this Buddy that was going to be so much more than he could have possibly lived up to.  This “ghost” still exists, and still remains unchanged.  The Buddy that doesn’t have Down Syndrome, his chromosomes remarkably still attached and not broken.  Somehow at conception they were fused in the correct alignment and life for him and me went differently.

I don’t wish for him to not have DS.  I just see him that way.  Not every moment.  The son that is lost is not there most of the time now.  When he was little though he was there more often mostly because I needed him to be. 

In letting go of my “ghost” I was able to see things more realistically, more what is in Buddy’s world.  I have longed many times to spend some time there; it must be an amazing place.  I don’t know and will never be able to know whether I would be happy or sad there. 

I have mourned my son’s loss of intellect, his athletic prowess and creative skills.  I still in more selfish moments mourn those today.  Buddy doesn’t care about those though, the ghost in my head does.  I needed hope; I needed there to be some chance that he might be different than he was.  A miracle child…then as time marched on I realized less and less that I didn’t need that miracle. 

The miracle was indeed there and his name was Buddy.  All children are. 

Buddy filled up my life and the ghost started leaving.  I have inwardly been amazed when Tyler could start saying Dad.  When a complete sentence came out of his mouth that I understood.  When I watched him throw his first strike at the bowling alley, the gutters up and with help from Dad.  I have watched what were scribbles become his name and those same scribbles become people and trees in drawings.

The boy wins always against the ghost. 

I have spent hours in front of the TV with my head against it to feel static electricity because Buddy does, I’ve watched doors open automatically, I’ve seen 1000s of pictures sprout from Buddies camera and now even movies.  He didn’t need a manual for the camera.  The manual he couldn’t read.   

I’ve met people in stores, restaurants, school events and even in other states.  All know Buddy.  I don’t know them, but he knows them. 

Children have shouted, “retard” at him and he just looks at them confused.  Showing almost pity and a little hurt either in more comprehension then I give him credit for or none at all.  He deals with those moments more gracefully than I have.  I want to pound them, pulverize them…hurt them back.  Instead I go and talk to them about DS and how it’s not about being “retarded” It’s about being different.  In our diversity there is strength.

Sure it’s talking different, acting different, seeing different and in most cases looking different.

What would have hurt me when Tyler entered this world was his looking different.  Shallow though I may be and a hypocrite at times.  I had hopes that the coke Bottle glasses and atypical DS features might not be apart of my boys life. 

I still cringe sometimes when he gives me some action that wouldn’t and in many cases couldn’t be done by my daughter. Most times I see the handsome young man that resides in my head each day.  In an IEP session I also had one of his educators say something that I might have assaulted them for just a few years earlier.  “With all due respect, how can you not love him and want to help him.  You can tell that he needs help and he is just so cute.”

On May 18 though my progression into enlightment started.  I am so far just starting on this journey and I already see I have so far to go.  On May 18 was the day that I realized I was hanging onto a ghost and I needed to let it go. 

I will admit to always wanting to be a good father.  Whether I am or not I don’t know as I will ever find out.  I live with every day what I don’t do.  Like write this missive instead of going over pooh drawings with Tyler who is watching the Justice League on DVD in the next room.  I try to pat myself on the back when I think something comes out of my mouth that at least sounds good.  Sounds like I would want to hear from my own father or I think a father should say. 

I will admit to still having times where I sit next to the “ghost” Tyler.  In those moments, sometimes early in the morning before he gets up, I will just stand and stare at Buddy.  Sometimes he has forgotten to take his glasses off, other times he will be clutching a favorite movie or Batman doll.  I look into my son and see past the facial features, which more so today than yesterday mark him as a child with disabilities.  His smallish ears and his eyes, which aren’t the proper size for his face, his hands or even his skin which is so dry it sometimes has a reddish hue to it. 

I will stand their mesmerized by the “ghost”, seeing those first moments on the operating table before I knew of his diagnoses.  I will remember the first time he grabbed my hand and felt he would be a golfer.  Thinking fondly even then of the events in our life together, reading books, helping with math, chemistry or science homework.  Maybe traveling and photography, maybe something like what happened in my own life, child leads father to bowling or golf.  Invigorating passions that the father may or may not have had without the son.    We sit together on some bench this ghost and I and then I let him go.

I used to hold onto those moments in the early days, when there seemed to be nothing else to hold onto.  I carried the ghost with me, needing him.  I used to have to wrestle the ghost away from my thoughts, making myself see, feel and experience what I had in front of me.  The ghost always was just that, a coping mechanism.  What I have in front of me is what has always been there.  It’s Buddy and he is what is real and that is what I like to hang on to.