Soap

I don't care who you are. It's impossible not to find this picture adorable.


Just do it.  These are the words that come to mind as I stand in the driveway of the car dealership, a technician’s hand buried in my trunk, straddling discarded individual soap containers that litter the floor.  It looks like someone went hotel to hotel and raided every bathroom, then threw it all in my trunk too fast to make a proper getaway.  The technician commented only briefly “Back from vacation?” He asks.  I do not reply. 

I am here because I drive too fast.  It’s one of the last holdovers from my youth when I ruined a succession of GMC products by driving all of them with a lead foot right into the ground, or in some cases the most conveniently located curb.  My current car’s safety features include rollbars that pop up from the trunk whenever you hit a bump too hard, which I often do.  The emergency lights pop on and the car swears it’s been totaled.  It’s quite the production.  There’s a way to reset it, a spot with an allen wrench nestled in the trunk.  I almost always forget it, and it takes the dealer five minutes.  But it means he has to open the trunk.  While I keep my car reasonably neat, the trunk is another matter.  It is filled with the detritus of every car I’ve ever owned, ported haphazardly from car to car to car at each switch as I am always too lazy to just clean the old one out.  Jumper cables.  College transcripts.  CDs I burned in high school that almost certainly will not play now.  Some certificate I received the day I was sworn into the bar.  I should do something with that.  Since James died, the soap. 

It did not come individually packaged.  People handed it to me in bags, the remnants of which I see clearly in the car.  Mementos of their own vacations no doubt.  I mentioned it on the blog I think, the value of those little hotel sized portions of soap the hospital workers (Social services? Guest services? I can’t remember.) handed out to us when we stayed in the hospital.  Generally you do not plan for a multi-week hospital stays.  Then again, perhaps you do.  Perhaps people schedule their procedures and have a reasonable anticipation that they will live to have them performed, and come prepared accordingly.  I did not plan.  The first time was in the PICU.  There are no individual bathrooms in each room in the PICU, only a community bathroom with a shower located outside the restricted confines of the ward itself, on the other side of the buzzer.  You wear sandals, like people always did in the community showers at my dorm in college.  It just seems like good advice in a communal bathing space.  They give you soap when they come around, pausing just long enough to talk and look after you.  You never realize how dirty you are until the water hits you.  It’s funny because you can’t imagine why you’ve been sweating so much, when you’ve hardly moved and been fighting off the cold most of the day.  The last shower is a distant memory of course, and perhaps that explains it.  On the floor each room had its own shower and bath, presumably for the patients, though James was never big enough to be bathed in anything other than the sink, so everyone else used it.  It’s a shame.  He loved to splash.  I gave him his first bath in the hospital after he was born.  He was beautiful, and I remember thinking to myself, as I did so often then, that this was only the first of a lifetime for him, the beginning of a routine. 

I know I would not have remembered I needed soap unless one of them gave it to me.  Did I ask? I can’t remember now.  I probably wrote about it if I did.  I should look.  I almost certainly will not.  Each lasted a few days.  Eventually soap came up from home, and that helped.  But the travel sized bags provided an important bridge. 

After he died, people brought the bags.  I appreciated the gesture.  They asked if I could take them up to Children’s.  A reasonable request, I knew where to go and who to see.  They did not.  I knew where to park and the fastest way to get there during rush hour.  How could they?  They could also not know how terrified I felt about it, terrified of walking over the sky bridge and over the garden where he had his last photo shoot, of how paralyzing the fear that quivered in me at the thought of it was.  But these are the kinds of things one does not mention in polite conversation.  “Thank you for giving me this.  I’d love to bring it up to the hospital, but I’m afraid I might start crying uncontrollably at the front desk.  Would you mind doing it yourself? Thanks.”  So the bags, inevitably spilt or broken, accumulated in the trunk, and the soap slowly formed a layer of stuff amidst all the other debris, obscuring the floor.  I ignored them studiously, piling groceries and suitcases on top of them and trying to deny the reality that eventually they would need to go somewhere else.

And that’s where they are when the technician pops open the trunk to repair my latest speed bump.  He comments.  I ignore, but I start to think to myself.  Just do it.  Just take them.  I’m less than five miles—if that—from the hospital here.  I can do this.  It’s an impulse, but I’m not fighting it.  I stop at the Starbucks on the way—the closest Starbucks to the hospital that is not in the hospital—and continue on my way.  Keep it together, it’s just a hospital, I tell myself.  I park in the garage on autopilot.  Did the rate change?  The ticket is the same.  I used to have a weekly pass, so the dailies stacked up in the car.  After he died I must have thrown out a dozen.  I park high, but close to the bridge, which the only part that matters.  Digging around the trunk I rescue the soap and some of the bags. 

Down the elevator.  Stop on 2, never 1.  I recognize the faces on the skybridge.  Not the people, but the faces.  Some are relieved.  Emergency room visits.  Some, though, have the haggard look of a person who intends to be here a while.  There’s more focus.  And the kids are never walking with them.  I must look different than last time I came here.  I suppose I am different.  I don’t start shaking until I walk into the lobby.  I am regretting the grande latte, which I’m clutching in the opposite hand of the soap bags.  There are the greeters.  The best cafeteria is below us, the stairs are near.  Valet desk on the right, couches on the left.  The greeters are volunteers, they hand you badges with the floor you’re headed to.  I used to almost have them all, but I never needed to stop because I always already had one on.  Today I do. 

There are two greeter volunteers, an elderly man and a high school girl.  I choose the man.  I start talking before he can warm up to ask me where I need to go (as if I would need directions) “I have some soap, for social services (I decided to go with that. Guest services just didn’t seem right.)  He looks perplexed.  “Soap?”  “Yes. My son stayed here for a while last year.  They gave us soap; I’m trying to give some back.”  I wonder if the tremor in my voice is noticeable or not.  How can he not see gift shop in the corner? I want to ask him if they have the giant giraffe in.  James had one at his party.  But he would not know that, or that it was in the room when he died.  He seems more understanding now that I mentioned the son, though I did not mention if he was alive or dead.  That was intentional.  “Oh, yes, I’ll get someon—“  I cut him off.  I’m feeling less certain now, the impulse is fading.  We took James home through the doors on the right in his Moses basket.  No car seat.  “No, it’s fine.  I don’t need to wait.  I trust you.  It’s from the Sikes family.”  He nods and I think is preparing to offer a thanks but I’m already walking away. 

I make it to the car before the first tears.  I’m glad I made it over the skybridge again.  The people with the long faces have their own problems.  I sit there for a while.  In a strange way I miss being here before.  I miss the hope associated with that.  I keep the door open to ward off the heat and I lose myself for a while.  I have a good spot, and I notice someone waiting for me to leave, so I do.  Better they take the spot and use it. 

It’s done.  I’m glad.  The soap will mean more to them than my trunk.  It’s the right thing, and really, the only thing to do.  I feel better having done it, one more thing that is not that important but that feels good.  Most of the little things do. 

Thank you all for your continued thoughts and prayers.

Day Three Hundred Sixty Five

One year ago we began. I suppose we never really ended, chasing the tumor through surgery, the terrible promise of chemo, and finally home again. James found his own way around the tumor there. The journey changed. The path became less clear and more muddled. It's strange in a way. James dying settled a lot of things. Side effects of chemo, what the next year of treatment would be like. It took away all of the unsolved variables of that equation and replaced them with an absolute certainty. The trouble is dealing with that, with knowing it and living in it, walking around each day with that settled on your soul. The adjustment is not pleasant.

If you told me one year ago today, sitting at James' bedside with the white noise of our neurosurgeon in the background and a picture of James' tumor splashed on the wall that I would spend the day a year later without my son (unless you count his grave, and you really can't), I would have hit you. I would have called you a liar shortly thereafter, and after you left me alone I would have started to cry because I would have been frightened you were right, and fully aware I was incapable of dealing with what that meant. Today, I'm still not sure but I am here.

In many ways, I'm not sure what I expected. Some revelation, perhaps, as if the date itself held some special significance to the world outside of me. None of that happened of course. It's a day. A day when the thoughts are closer to the surface, when my memory of him is more easily accessible and I can hear his voice a little clearer. But it's still just a day. I cried, but not as much as I might have. There is no clarity, at least not anything new. Because it's the kind of thing I do, I looked up most of the key dates on wikipedia to see what if anything happened on them. June 23 is particularly unmemorable. A few minor battles in minor wars, the birth of a lesser King of England, Julius Caesar's illegitimate son with Cleopatra, and a hundred other individuals just important enough to merit a place on wikipedia but not in your memory. It's just another day, and not an especially crucial one.

Not much happened. The day passed on a slow, steady manner. Denton. Lunch at Rudy's, a bar-b-que chain restaurant that has the distinct advantage of being at the same exit as the cemetery. Home and netflix to pad out the afternoon. Dinner. Bed early. Just another day.

I know better to expect revelations. I know better than to expect anything at all on a schedule. It's been a year and there will be more years to come. More days.  I miss him either way. I love him more. I always will, and while I can't count on revelations I can count on that.

Thank you all for your continued thoughts and prayers.

Pain

Pain is the wrong word.  It is grossly inadequate and also simply incorrect.  Pain glosses over the unique and special ways that exist to hurt, it neglects the finely tuned nuances of each individual experience.  Because the great loss, James’ death, masks a thousand smaller horrors.  Sick James. Not dying sick, just sick.  A year ago, we wasted a weekend in an emergency room combating a phantom summer bug.  The bewilderment that accompanied his diagnosis.  The helplessness of watching him suffer a seizure, his little body writhing with a team of doctors around him, me standing uselessly in the corner.  The debilitating thud of his initial diagnosis, the tumor so obvious on the MRI I could have sworn it was mocking me.  The last days we spent together, that certain sorrowful calm that seemed to settle in. 

The events paint too neat of a picture of course, the things that happened, while horrible, do not form the entire picture.  There are frustrated dreams and ambitions as well.  Silly things, really.  The dashed hopes of watching him play any sport.  The unfulfilled “I wonder” questions.  I wonder what James’ voice sounded like.  I wonder what his first word would have been.  I wonder when he would have walked, and how fast.  I wonder what color his hair would have ended up.  I wonder if he would have liked to swim.  I wonder what he would have looked like in pre-school/school/junior high/high school/college/work/on his wedding day/at any age over eight months and seventeen days.  

Each hurts in its own way and inhabits its own special little void.  Negative space where something whole should be.  Pain implies something too positive, too overt.  It suggests that you are being acted upon.  Grief defines itself by absence and an overwhelming sense of want.  It is the lack of any action that defines it.  There is a hollow quality to it.  One of the things people tell you when you have a child is that when you become a parent, a piece of your heart exists outside your body.  I never liked that.  I found it trite, one of those things people always go on and on about for the sake of saying something meaningful without saying anything.  But there’s some measure of truth to it.  

I am not the man I was before James died.  I am not that man because I am missing a part of me—the man I was will not be returning.  I am not going to wake up one day and suddenly be ok.  I will always miss James, I will always love James.  This is perhaps why pain is such a particularly wrong word.  I do not expect to spend the rest of my life in the state I was the first few months after James died.  I also do not expect to ever return to “normal.”  I expect to always miss him.  But I do not expect that to define me, nor do I expect that “pain” will be the lasting legacy of what James meant.  This month and the next will be challenging.  It’s not the “pain” though, and it’s none of those things I wrote above.  The main thing is that he’s just not here, and I really wish he was.  I always do.

Thank you for your continued thoughts and prayers.

Summer

Summer

Summer arrives.  Around James’ grave the grass slowly dries up, sustained more and more by the sprinklers, the wildflowers of spring withering in the heat save for a few resilient Indian Paintbrushes clinging to the shade.  This is how I remember it in my first memories of it.  The days and weeks after his death when I first came so often I developed a personal relationship with the gravediggers.  I suppose they must prefer caretakers, but I never asked.  Last time I went, my cell phone played the overheating game again, just like last summer.  I forgot to bring water and sweated through my shirt, pausing at some point in my reverie to walk over to the hose the cemetery keeps on the edges of each “garden” for a drink.  I believe the idea is that you can water the grave yourself if you so choose.  I never do, at least in part because the lusher the grass is the more it bothers me.  I turn the faucet and wait patiently for the warm water to pour out of the spout, the cool water requiring a few moments to overcome the accumulated warmth of the plastic.  I take a few long drags and for just a moment feel like I am young again, taking a long drink at the end of a summer’s day before turning the hose on myself to wash away the filth, a necessary exercise before my mother would let me into the house.  But there’s no nostalgia in cemeteries, and it quickly fades. 

Lately, I find myself willing the days to pass more slowly.  We are coming full circle, a calendar year since our great adventure began.  One year ago today, James almost certainly had cancer.  The tumor that took his life was no doubt already visible on an MRI, rapidly gaining strength.  But no one knew it.  He was throwing balls, crawling and eager for you to hold his hands to walk him across the floor.  He was happy, as he always was.  Two days later, he started throwing up.  Nine days after that, we found out about the tumor.  Twenty four days later, he died.  A little less than a month, and with it the summer.  People keep talking about how hot last summer was, fifty days over one hundred degrees.  Brutally hot, a record in every book.  I have no memory of that.  My memories of last summer are all cold and sterile, the artificial chill of the hospital everywhere.  Warm blankets pulled from the warmer on the ICU floor, a welcome respite.  I took so many they eventually ran out and I memorized when the orderlies came around to bring more.  They never stayed warm long enough and I always ended up cold, the chill in the air compounded by the cold vinyl couches that doubled as beds never quite retaining my body heat.  The few times I walked outside the hospital I remember how refreshing the heat was, the goosebumps it raised on my arms.  I achieved a spectacular level of paleness, an unhealthy pallor complete out of sync with the season. 

That time is coming around again.  Father’s day is right around the corner.  Last year, James, considerate boy that he was, “bought” me a suit for father’s day.  I think he may have even selected the pattern or perhaps thrown something in its general direction.  I wore it to his funeral a few weeks later.  This year it’s a holiday I could probably do without.  The heat is returning too, but this year it appears I may actually notice.  I have more time to notice. 

The pace of things quickens in the summer, vacations beckoning and promises of summer fun on the horizon.  I keep willing time to slow down, but just as last year when the world insisted on moving on despite James, it appears it will do the same this year.  Each date forms some kind of strange memorial in my mind.  June 14, the day he started getting sick.  June 16, 11 months from his death.  June 23, Day Three Hundred Sixty Five from the old count on this blog, the day we knew.  July 16, the last day for so many things.  Each reminds me in an irrevocable way that James is gone, and he has been gone so long that an entire year has come and gone.  He has been gone longer than he was here.  I wish I remembered other milestones with such precision.  The first day he smiled, the first day he laughed, the first time he rolled over or crawled.  But I do not.  I assumed those would simply be small firsts among many, previews to impressive achievements like walking and talking.  The negative dates never represented a different kind of beginning though, and perhaps I remember them better for that.  You can’t choose memories after all. 

I do not always remember him sadly.  Often, I enjoy thinking about him.  James was a source of tremendous joy.  I was honored and blessed to be his father for all the time we had together.  Of everything I have ever done, I am most proud of James.  The summer is hard because for so many of these dates, the joy is tough to identify.  Some days in the hospital, James did amazing things that I look back on and am incredibly thankful for.  He was so wonderfully resilient.  These days are not those days.  Some days, all I can do is miss him.  Perhaps some days that is enough.

Thank all of you for your continued thoughts and prayers.

Scarring

 I've had many scars.  Ten stitches on my forehead from the bed post in my parents’ room.  They told me not to jump on the bed, which naturally encouraged me to do precisely that.  As it turns out, there’s a reason your parents tell you these things.  Another on the opposite side of my forehead from a bike crash.  I tried to run down a boy who I thought said something about me and I got the worst end of the collision, which seems fair as I hit him.  Thirteen stitches across my knee from the similarly poorly considered decision to rest my knee against a window in bed in high school.  As it turns out, windows are not especially sturdy.  Skin graph scars tucked away in corners of my body, collected to transplant to my ear and my inner ear, to correct inborn flaws.  A long but quite neat tear by my rib, the product of cartilage removed to form my ear.  When I awoke from that surgery I simply moaned as I did not have the strength to scream.  When my mother heard the noise, she asked what it was.  When they told her she fainted, crumpled in the hallway outside my ICU room.  I used to write about that surgery every year for whatever essay writing assignment teachers would hand out.  Some teachers cried.  Either way, it became a defining tragedy, an easy crutch to explain what an awful child I was.  I took advantage of it, which I regret. 

Most of these scars faded almost completely as the years went by.  The scars along my forehead thinned to a pale grey from an angry pink eventually fading entirely into wrinkles.  New skin grew in to fill the holes from the skin graphs, eventually almost indistinguishable from the skin that never left.  Even the scar on my rib narrowed and diminished as I grew; evolving into another wrinkle at best.  With them went much of the pain and anger that accompanied them, retreating into hindsight and indifference.  It’s difficult to stay focused on any one thing long enough for it to matter.  Life moves on.  New tragedies eclipse the old, joy overwhelms sadness.  I’m reasonably certain those are lyrics from the “Circle of Life” but there’s some truth to it.  

I tend to get annoyed when people talk about “healing emotional scars and wounds.”  It seems like one of those insidious and oversimplified slogans and analogies that people throw around because they want to avoid using words like death, dying, or deceased.  All the morbid ds require euphemism in common speech.  When one relative of mine was dying I remember the hospice where they were at gave out these brochures.  The brochure had a picture of a boat sailing into the moon on it and described the various phases of death as a voyage from the shores of life into the ocean of death or some similar nonsense.  I remember thinking to myself that these people could not actually be this silly.  No one’s going on a cruise here or some great exploratory expedition.  The undiscovered county line in Shakespeare is a metaphor about suicide, not discovery. 

Perhaps as a result, I do not like people to talk about my experiencing some kind of healing.  I think that misses the point.  James is not a scar or a wound.  He was my son.  What happened to him is most horrible because it happened to him, and he was a wonderful little boy who did not deserve even a fraction of what he went through.  What happened to me and the rest of his family is a secondary tragedy, a footnote.  To describe James as something that happened devalues the fact that he was someone who was.  His absence marks us.  Scar suggests too much negativity, and I liked James too much to call him a scar. 

To the extent James represents a collateral wound to us; the question becomes how obvious that wound is.  In this way I suppose there is some resemblance to a scar.  Like all the wounds, I suppose James has become less visible overtime. I smile, laugh and joke.  I work.  I go through my day and I seriously doubt most people who met me would know that I lost my son eleven months ago.  The wound remains, but it becomes less visible.  Right after James died I could bare say his name.  Unlike all the other scars I described above, this one only fades visibly.  The pain lingers, trapped somewhere deeper.  I do not intend for this particular wound to heal completely. It is important to remember. I do hope that it continues to become less raw to the touch.

Thank all of you for your continued thoughts and prayers.