Our Memorial Day

May 29, 2013.  Four years ago today we sat in Dr. Brown’s office at Children’s Hospital of Los Angeles waiting for the results of the MRI scan.  Our “scanxiety”—as they call it—was high.  Three weeks prior Sam’s behavior had taken a subtle, but noticeable turn for the worse.   His balance was off, his focus was diminished, and there was an increased amount of “glazed eye” episodes—times he just wasn’t paying attention to us.  None of these things, of course, were normal for Sam.  He had been a healthy, energetic little sparkplug, and a highly attentive, focused and high-achieving learner.  

All of that came to an abrupt halt starting around May 29, 2013.  Dr. Brown came into the room and sat down.  I can’t recall exactly who spoke first.  It might have been Sam—that would not have been out of character for him at all—but someone asked what the results of the MRI were.  I do recall very clearly what Dr. Brown’s response was, and he addressed Sam directly:

“Well, Sam, everything is relative.”  Then he drew a picture of how large the three—yes, there were now three—tumors growing in Sam’s head were.  Each was bigger than the last time, and Sam knew it.

Sam:  “Wow…That’s surprising…Because…I mean…We were just thinking that the tumor was going to be this big (holding out his hand and forming a tiny circle with his thumb and index finger).”

The rest of that brief meeting at CHLA is still a blur to me.  We were told by someone—though I don’t think we actually comprehended the magnitude of this at the moment—that Sam would be placed on hospice.  We staggered out of there and found our way down the street to the local Denny’s—Sam’s favorite restaurant and what had always been a haven for him, a respite from the poking and prodding and scans of the hospital.  Although Sam ordered “the usual”—mac-n-cheese, grapes and goldfish—I think even Sam suspected that “this time was different”.  Although he did not know that he was now terminal, I believe he knew things were not good.

As we’ve written about before, on the ride home, on the Ventura highway, with the vast blue ocean to our left and the looming mountains to our right, Sam lashed out, and for the first time in his battle against cancer he cried:  “It just seems like everything is just…just…IMPOSSIBLE!!!” he screamed, with tears streaming from his beautiful hazel eyes.  It was at once both the angriest and saddest moment of my life.  

Realizing that your child will die—soon—is like getting every bit of air, every ounce of life, squeezed out of you.  It was at that moment that I felt that I had absolutely failed—utterly, completely, 100% failed—as a father.  I felt that I had let my little boy down by not doing enough.  I didn’t really know what that “enough” was, or what I should or could have done, but I felt like a hollowed out shell of a person nonetheless.   

As a parent our fundamental concern is the health and well-being of our children.  It is our utmost priority.  It is the foundation upon which our children’s future happiness and achievements rest.  When we watch our children get hurt, even a minor injury, it hurts us.  And so the pain of something like childhood cancer is indescribable.  No child should ever have to suffer through it.  No family should ever have to suffer alongside them.  

There is a solution, though.  It isn’t immediate, it isn’t an elixir in a bottle or a quick fix, and it certainly isn’t easy, but a long-term solution is in the offing.  It’s called research.  And our take on research is that money spent on adult cancer research does not often “trickle down” to benefit children, but money spent on childhood cancer research can and does “trickle up” to benefit everyone.  That’s why we do what we do at Sam’s Foundation.    

Today, as we remember and pay honor to the many selfless men and women who gave their lives in service for our country, so too do we remember the many children who have lost their lives to this terrible disease called cancer.  Thank you to all of you for your continued support of Sam’s Foundation.  It is making a difference.

          

Birthdays & Black Holes:

Today our son Sam would have been 12.  When I originally sat down to write this blog I had plans to make it cheerful or at least upbeat—really.  After all, a birthday should be a celebration of life.  But the truth is…that’s really not where my heart is right now.  

The struggle between how you’d like to think and feel—in contrast to the reality of how you think and feel having lost a child so young—is palpable.  Bereaved parents don’t want to be “Debbie Downers”; we don’t like feeling sad; but sometimes that’s just our own personal reality.  The “new normal” as they say.

Don’t get me wrong.  There is a lot to be thankful for and, perhaps even more so than others, bereaved parents are indeed thankful for what we still have—our other children, our spouses, our family, our friends, a very supportive community, an opportunity to do good and make a difference—the list is quite long.  

Yet, there remains a hole in our hearts—a hole in our lives—that is not so easy to fill.  

Though there are no perfect analogies, I sometimes liken the loss of Sam to a black hole.  A black hole is so powerful that nothing—no light, no particles—can escape from inside it. And as you draw nearer to a black hole you at some point cross the Rubicon.  I’ll just quote Wikipedia verbatim: “The boundary of the region from which no escape is possible is called the event horizon.  Although the event horizon has an enormous effect on the fate and circumstances of an object crossing it, no locally detectable features appear to be observed.”   Yep.  I can relate to that.

There’s no accounting for when the black hole might start to suck you in.  But if and when you approach it, its effects can be devastating.  As it tries to pull you in, you start to feel like you’re suffocating.  You dread being lost forever in its dark recesses and vast nothingness.  

And so you often try to avoid the hole entirely.  You occupy your days with work and your nights with activities.  You keep your mind busy with “stuff” or “things”.  

But in the dim recesses of your mind you know that by avoiding your pain and suffering—by avoiding the Black Hole—you’re unwittingly avoiding your child.  You’re avoiding his memory, his life and his love.  And so you’re continually drawn to the event horizon.  

You cherish happy memories. You celebrate birthdays and holidays and recall happy thoughts of bygone days.  You cling to his old toys and clothes, flip through photographs, and say a little prayer at night asking for a dream with your child in it.  You feel that he’s in that hole and you want to go in there and get him, save him, pull him out and bring him back—to be with you again forever and ever.  

Thus, the life—the event horizon—of a bereaved parent can be exhausting.  Our lives look normal—“no locally detectable features appear to be observed”—yet they are really anything but normal.  Though bereaved parents are not so unique from anyone else who has lost a loved one—we do not have a monopoly on pain and suffering—the loss of a child does seem to suck just a little more life out of you.  Just like I could never imagine what it must have been like to sit in a foxhole in Vietnam or Korea or Iraq and watch my comrades lose their lives and fear for my own, because I myself did not walk in those shoes, we humans all have our own unique pain and suffering to sometimes deal with.

At the end of the day perhaps all we can do is fill our holes with love.  Maybe the pain we feel is only so great because the love for whom we lost was so immense.  Perhaps we suffer only in direct proportion to the love we felt and shared.  And so today we celebrate the memory of a little boy whose happiness, zest for life, hunger for learning and love of others inspires us to this day.  Happy Birthday Sammy.  We miss and love you very much.

www.samjeffersfoundation.org