Willem -- only days before he was stricken with HLH -- leisurely walking, straw in mouth, not a care in the world. A healthy 9 year old boy.

Saturday, November 16, 2013

Not Alone

We received a very beautiful letter in the mail today from someone we do not know. We are linked, unfortunately, by the unfathomably torturous, and soul-shredding loss of a child. An explosion-in-common has devastated our realities and the few scattered remnants of a life now long gone are all that remain.  It is difficult to even recognize what these pieces were before... Before happiness ended.

For me there's no real way to put any of the pieces back together to create any semblance of the whole, but there is an exhausted thread holding up what remains of -- I can't find the word(s) -- the remains of me is all I really know to say right now, and, well, this string was made a little stronger today by the beautifully sincere words of a stranger.  

Thank you Kim for sharing your words with Erin and me.  A very thoughtful and kind message.  Thank you.

I wish that our stories did not have to be told.

Wednesday, October 16, 2013

"Beautiful Day"

'Tis a lot like walking on the floor of a lake I'd say. Y'got your mask on, you can breath, you can see -- in fact, with a labored glance to the surface you can see the sun, and the cloudless blue sky -- but it's all filtered through the brownish, particle-filled haze of the water so there's just no seeing it like everyone else. Sure, they say it's a beautiful day, certain you must know what this means, and you scan your memory for what a beautiful day looks and feels like but the feeling, the sights, the smells... They're all gone - the line of cognition severed. 

Lead boots hold fast your feet... Slow and tiring this walking on the lake floor but there's no other way; no other choice but to get to the other side only to turn around and do it again, and again, and again. Because they need you to. They all need you to. They all need you to keep moving. Even the ones that shouldn't matter need you to keep moving. 

Tired. Hurts to breath. Curse this stale air! Would that this damnable tank just empty and fill me no more.

Tuesday, February 26, 2013


Above the dialogue on the television and the soft hum of my laptop I heard Willem call out, as if in the distance - and more like a question than a statement -- "Hello?"  It was his voice.  So much so that I replied to him... "Hello?"

Never before in my life have I ever wanted so badly to hear a voice emanate from somewhere other than what we are programmed to understand.  I answered back with a hope beyond measurement; beyond expression...  A longing...  Such a longing.

After turning off the television, and over the hum of my laptop, I heard the unfortunate reality of the ethereal hello: it was only my stomach.  The mundane physical reality of hunger.  So earthly.  So disappointing.  So real.

Monday, December 24, 2012


Liliana had a school friend over yesterday and this friend must’ve told her mother that we didn’t have a Christmas tree and that our home was, apart from paper snowflakes the children made, bereft of any Christmas decorations, because we came home from a friend’s house to find a tiny Christmas tree by the door of our garage.

Christmas this year is less something that is celebrated and more something that must be endured; it is a project; a term paper due in a day and the only thing written is the reminder that it is due.  This tree is symbolic of the notion that, although it can be ignored, it cannot be forgotten.  This tree stands as a symbol of the community that continues to rise from unexpected places to help us stand during this, our worst of all, Christmases, and remember that there is still love and hope in this world.  Even for a grumpy, angry, and depressed old man and his scarred but still perfect family.

There is an unwillingness to accept that there is still hope and still a future yet I continue to seek, reach out for, and drink of, the random charitable offerings.  I look at this tree and I feel two opposing views as to what it can represent.  There is the thought that this tree pales in comparison to our trees of the past, to the happiness of other Christmases, and proves more as an irritating reminder that this Christmas is horribly painful and a weak attempt at happiness.  With very little effort, however, I force myself to live inside the caring thoughts of a little girl who saw our emptiness and felt the need to fill our void.  This is how I shall look at this tree.

****** THANK YOUs ******

Thank you to Liliana’s classmate.  We are thankful that your Christmas spirit is big enough to share for we have none.

Thank you to whomever left a living Christmas tree, beautifully decorated with origami, on our doorstep this morning.  Thank you for caring and putting smiles on my children’s faces.  

Saturday, December 22, 2012

Willem the Keystone

Happy Willem Memory:
Around 2006, I imagine, Willem and I were walking through the woods of a nearby park. He was wearing my Desert Storm boonie cap and I was teaching him how to move tactically through the woods – identifying danger areas, how to signal to me that there were people and how many, how to crouch, when to move and when not to, etcetera.  Before long, we just explored and pretended to be deep into an unknown wilderness. He loved the woods. He was five.

Our family dynamic is terribly fractured by the loss of Willem.  It’s as though Willem were a keystone in an arch, our arch; an arch that included mommy, daddy, Wyatt, Lili, and Em and Ba.  We have a broken arch that’s trying to hold up broken pieces of the rest of us and failing – we’re just crumbling and falling as the weight of the holidays crushes and as time steals resolve. 

Apart from the paper snowflakes that Lili and Wyatt made, our home is bereft of any Christmas decorations. Lili and Wyatt deserve decorations and to enjoy Christmas in all its splendor but it’s just not Christmas without Willem and I’m not entirely sure it ever will be again.  We tried to make a stocking for Willem last night but the project failed (the details of which are a tragedy in itself) and the ruined stocking was relegated to the trash.  Lili began the chorus of tears and Wyatt simply went numb, quiet, and left the room.  We are not sure whether to take it as a sign to stop – we’re just not sure what to do. We feel guilt in not having some physical representation of Willem in our (celebration?) of the holiday. We’re just terribly empty and hurt.

My father brought over a book for me to read: Taming the Tiger Within: Meditations on Transforming Difficult Emotions.  I must give my father some credit: He knows I am angry but he remains calm, in the periphery, and keeps trying.

***** THANK YOUs *****

Thank you to my brother Michael who continues to hold me up and shield me with his intellect and much needed wisdom when those who would oppose me sling their arrows.

Tim and Sheila.  Thank you for your generous gift.

Thank you to those that are still reading and caring.  

Thursday, December 20, 2012


Happy Willem memory:

One of our first walks together...  A simple walk on the sidewalk, holding hands, he was at a walking age but not quite talking age, just walking, both of us quiet.  Willem broke the silence with some form of a baby-like "whoa" as he bent down to pick up and marvel at a decayed leaf in the sidewalk; my first memory of his love of nature.


Someone very dear to me asked me this evening if I find any joy in my life (still).  At first I was a little surprised that this person didn't already know the answer and then I thought that maybe he did know and was simply trying to get me to reflect to make sure that I know.  He's tricky that way.

So... Yes... I do still find joy in my life - every day - and when the joy happens I attempt to store it for future use; for when the darkness comes.  When I fall to the bottom of the well, I always seem to fall with a little bit of Liliana's beautiful smile and a few of Wyatt's snuggles and reminders of Erin's strength; all of which conspire to form a way back -- a way out of the well.

There is, as should be expected, darkness and sadness all around me and I have failed to inform the reader that I still walk with light and tidbits of joy with me.  For example: Liliana and I played a little art game last night whereby I would draw a random object (in this instance, a circle) and would, then, hand the paper to Liliana to expand upon.  We took turns drawing objects and, without communication, turned our nothings into somethings -- somethings that became familiar. I made a rule that we had to have a pretzel rod in our mouths to draw.  Don't ask me why.  Random silliness I suppose.  This moment of joy will go in my pocket and I will use it whenever I need it.  I have a trailmix of joy in my pocket.

Yes... Yes I am sad, angry, depressed, disputatious, confrontational, and many other things, but I still find joy.  I still smile.  I still laugh.  My previous post is nothing more than the result of pressure, time, and a lack of proper maintenance causing a break and the resulting release.  It is me screaming at the bottom of the well, to the slippery walls, to the nothingness at the top of the well, screaming that I am still here and I am still in an immeasurable amount of pain and I want out of the well.

So rest assured that when I see your face I find joy.  Know this.  Your face brings me joy.  You ask me how I am doing and I tell you that I am "okay" and you know that I am not but your face, and the fact that you are there, the fact that you still bravely ask me how I am doing (because you care), brings me joy.  Dangerous thoughts linger but they are no threat -- they are just thoughts and they must be normal because I am normal.  And I hurt.  I am strong, reader, strong enough to endure this, and every setback (even the darkness), because I am fortunate to have many positive people and situations swimming very near to tell me that it's going to be okay.

Friday, December 7, 2012

Becoming Friends With Dangerous Thoughts

Struggling to find positive images. Struggling.  Being overwhelmed of late by anger, by guilt, and the pain that comes with both drag me nearer to a "permanent solution."  I care less and less for the world around me.

No longer do I view those that have given up in the face of adversity as quitters for I have come to know unbearable pain.  The holidays have cut at me too deep -- sadness and despair stand close by to twist every smile and warp every brief moment of happiness into guilt.

My parents, too young and unprepared, in their lust and haste, created me too early, accidentally, alone, and without a sibling.  Shortly after, they left each other, and, in my mind, abandoned me too.  They didn't leave me to my own devices -- they just became absent. Delinquent. Deficient.

I wanted so badly to offset this neglect by creating a larger family; A close family. A family where husband and wife stayed together... A family where the oldest guided the younger.  My oldest, Willem, my clone... my better me... who had everything I didn't, died, and just about all of me with him.  My dear son.  My first-born.  I ache.  I ache so terribly, so immeasurably, and feel myself slipping deeper into the abyss where reason fades with the light and then dies.

A glass of water and a blend of leftover sleep and anxiety aids lay untouched and promising.  Few would understand.  Many would curse the cowardice of leaving behind a wife and children and at one point in my life I would have done the same.  But now I have lost, and now I understand the absence of reason, and the magnitude of loss.  Understand now how color, sound, and taste no longer captivate as they once had.  Understand now how wonder wains, and how nothing holds as much splendor anymore.  Understand now how absolutely pointless it all is...

I am now in a battle for my life: A battle I must fight every morning. Every day. Every evening.  A fight to find purpose every day.  To remember why I must keep fighting to live.  Tonight I don't want to but tomorrow I might want to live just a little longer and I try so hard to remember that there are good days.  I fear, however, that darkness is winning.