The ten things I miss most about John

1)    His indomitable never-say-quit spirit.  For example, watching him win gold medals at State in snowshoeing because he never let up.

2)    The joy with which he approached almost everything in his life. We found a way to make most everything fun, and we didn’t worry much about the rest.

3)    The innumerable games we invented together.  Like launching Lincoln logs at plastic army soldiers.

4)    His fierce sense of self and his boundaries. Like defining the kind of hugs he preferred the night before his accident.

5)    His hugs and his greeting whenever I came home from work.

6)    Sitting next to him at dinner every night.

7)    Watching Bob Hope movies with him and then acting out the silly routines and laughing like hyenas.

    John’s immeasurable joy at Christmas and birthdays.  Every birthday I celebrate seems lessened since he died.

9)    Sitting next to him in church and watching him watch me sing.  I still can’t sing in church without him.

10) His bedtime routine when we decided which bad guy he would defeat and which heroine he would save in order to ensure he had good dreams.

Missing

            Recently, Mary Ann remarked to me that my recent posts seemed to indicate progress through my grief, that I didn’t seem to be as disconsolate as I have been during the past two plus years.  This comment makes me think it is time to offer an update as to how this whole experience feels right now, as opposed to how it might have felt in the past.

            While on vacation here in Cape Cod, I have been reading Killer Angels, a historical novel about the Battle of Gettysburg in which General James Longstreet of the Confederate Army is a principal character.  As the author imagines Longstreet’s mindset, what in French is called mentalité, he comes back again and again to the fact that the general had recently lost all three of his children to a fever in Richmond during the same week.  The author makes a point of maintaining the reality of this ultimate loss in the story of one of the most celebrated military minds of his time.  However disciplined, however high the stakes, Longstreet cannot suppress his feelings all the time.  A grand and enthusiastic poker player, Longstreet gives up the game after losing his children, and in many scenes is portrayed sitting to one side of his officers while they play.  Concerned about him, they often beg for him to enter the game, but he cannot and always refuses.  These are not unsympathetic men.  They are his closest aides, but even they do not understand the pervasive pain, sense of loss, and feelings of inadequacy that fathers feel when they lose a child.  Longstreet suppresses his feelings through intense will to compartmentalize his thoughts.  The author makes clear that he pushes such thoughts away as much as he can, but that at night, when there are fewer interruptions, this discipline breaks down.  I believe whether through personal experience, or through observed experience, this author has gained an understanding of how men in particular are affected by such tragic events.

            Perhaps because I am now distracted by the joys of instructing college students, I am less aware of the pain of losing John for much of the work day.  In a similar way, Mary Ann has committed herself to a bulging sack of philanthropic and work activities that keep her busy most of every day.  For me, the career-long joy I have taken in observing undergraduates learn has gone a long way to maintaining my balance.  I have been blessed with some of my strongest classes during the past two years, and my involvement in the academic lives of my students has filled a great void in my life.  However, this is not the void left by John’s absence.

            There are moments when it seems almost impossible to believe John actually existed.  I mean, we live in the same house, Courtney and Russell continue to move on in their careers, the same friends in Mahomet stop by, the dogs have the same routine.  In these moments of cognitive dissonance, it is very difficult to recall the reality of John.  Did we really have to worry every waking moment about where he was?  Was I constantly attuned to his feelings, his needs, deciding whether to intervene or not?  Did we really live that way for sixteen years?  It all seems so foreign now.

            At other moments, the pain of having lost such a special young man is so real that I stop breathing.  I can’t say as I cry very often, hardly ever anymore, because I push away before the tears start to come.  People have moved on, it makes everyone uncomfortable.  The one sure place I am certain to choke up is the cemetery.  To see the last tangible marker of such a remarkable life be reduced to that stone is still heart-breaking for me.  Consequently, I go to the cemetery much less often.  It was so important to me that John not be overlooked, it is hard to visit his grave marked by such a small stone on the back edge of the cemetery.  The exact marginalized place away from which I tried so hard to bring him.  A constant jabbing pain of having failed to guide John to the fullest realization of himself.

            One of the great losses in my life associated with John’s death is how I have ceased to remain involved with the several organizations to which John brought us:  CIDSO, Special Olympics, Challenger League Baseball.  Mary Ann has remained involved in John’s Friends, a ministry for people with special needs at the church we have attended in recent years, but I can’t seem to do it.  Partly it is my reluctance to face other parents with my unresolved feelings of responsibility and guilt for John’s fatal accident.  Partly it is that I am not always very comfortable with other people’s children.  Partly it is fear of the Isannah experience:  falling all too easily into old patterns of relating to these kids leading to unmanageable feelings of loss.  Partly it is that I was never too involved with the parents, with the exception of Coach Ed, the Jewetts, and the Stantons, and there is no natural reason to remain involved with them now.

            I miss the Harpers the most. (We see the Stantons, or at least Mary Ann does, fairly regularly, and we feel deep affection for them.  We see the Jewetts more often but way too little.  I never fail to feel like myself when I am around them.)  Coach Ed, who lost a daughter-in-law about a year after we lost John, has proven to be one of the most understanding men I know.  We have spent several hours around the kitchen table talking and laughing and commiserating together, and it has been wonderful therapy.  I am really not sure why I have not done a better job of staying in touch.  The guilt thing?  Too many reminders of John?  I am not sure.  The Harpers have been wonderful providers of that kind of love that knows no limits and asks for nothing in return.

            I do not expect to “recover” from John’s death.  I do not expect to lose the feeling of pain so deep they take me to the edge of sanity.  What I do hope for is to learn to live with this pain and the diminished image I have of myself, to manage my feelings and thoughts so as to be able to function and be of some use to somebody.  Beyond that, at this point, I don’t care.  I still laugh a lot, especially when the four of us are all together, but I have even less to say in public, feeling unqualified to offer an opinion of any worth.

            So there it is.  I try to remain faithful to the purpose of this blog, to share remembrances and understandings of my son John, while sharing with those of you who truly want to know what I experience following the loss of a special child.  Comments are always welcome, and I rely upon you to keep me honest.

Shakespeare

Russell recently did a very credible job of playing a brutish military type guilty of several types of bullying including the rape of a prostitute played by a male actor.  As we reflected on his performance we were drawn to remember previous performances by family members including John. My first memory of John on stage came when he was still a baby and « performed » in the S.P.I.C.E. (Early Childhood) Center Christmas pageant, playing Santa Claus. John being John, he would not keep the beard on his face, and even as a baby kept pulling it off or letting it fall off.  Since Mary Ann worked for SPICE at that time, she was otherwise engaged and I found myself « backstage », the prototypical stage dad determined that my son not be « used » by the grinding machine of semi-spontaneous amateur theater.  John might not have been even one year old at this point, but dad was determined that John would not be humiliated wearing a beard that would humiliate dad, so I wasn’t very helpful in keeping the beard on. (As we know, John was very particular about what touched him.)  I looked at the young woman who was carrying John, and would carry him on stage, and I told her, « Don’t worry, John will act the beard. »  I thought this was hysterically funny, but the young woman just looked at me like I was deranged.  My irrepressible need to be a smart-ass did not produce an outpouring of Christmas spirit.  John was whisked away in her arms, and burst out on stage where he promptly urped and made his own “beard”.  SPICE was a woman’s world, but sometimes Dad does know.

John attended pre-K at a private school for two years, and in his first stage performance with this school, he once again managed to upstage everyone.  In this case, the teachers had been working hard to teach the kids how to take a bow, and John, who still couldn’t talk very much, took right away to this curious custom.  My memory of the show, for some reason once again seen from behind the scenes, was of John locking the audience into a loop of applause and bowing: the more they applauded, the more he bowed deeply and fully, and of course this sent the applause meter skyrocketing, producing more formal and obviously well-received bowing.  I think a teacher finally had to go out and grab him to break the loop, and let everyone go home.  Thus began John’s career as a physical comedian.

I come home one day when John attended Bent School to hear John announce to me “I hate Bradly.”  After considerable conversation, I learned that John’s class was going to stage a performance of “Alice in Wonderland” and that Bradley had snagged what for John was the plum role:  the Cheshire Cat.  John was always drawn to claws, and here was Bradley, not John, able to wear claws and be the cat.  John instead was cast as the 2 of hearts, and it took considerable persuasion by his mom to have him accept the importance of this role as well.  In the interest of Bradley’s safety, it was some time before any of us trusted John with the guard’s weapon.  Still, John came to take pride in the part, and delivered his line flawlessly, that is, so well that anyone in the audience could understand him.  For Mary Ann and I, this was the real triumph.

John went to the Shakespeare Festival in Normal with us one evening when he was six or seven years old.  He seemed intrigued with this new kind of video, and even though he couldn’t understand most of the words, he paid attention to the gestures and movement and constructed his own reading of the play in his mind.  At intermission, I sent Courtney and Russell off to the bathrooms with John in tow so that Mary Ann and I could have a few moments respite.  As I have said before, out in public with John meant that we had to always focus part of our attention on him, to make sure he didn’t wander off if bored.  Within five or six minutes, Russell was back, looking mortified, to tell us that John had locked himself in the stall, and wouldn’t come out.  Sigh.  Off I went to see what was up.  The men’s room at the outdoor theater had one urinal and one stall, and with John locked in the stall, was operating at 50% capacity.  A fairly long line of impatient dancing men grumbled out the door as I squeezed my way past.  Having shown me where John was, Russell announced that he needed to “check on Mom”, and fled. 

John and bathrooms warrants a post of its own, and I will get to that later, but suffice it to say that bathrooms provided John with a private space where he could escape all the attention he drew by his looks and his occasional socially awkward behavior.  It was no small feat to coax him out of a bathroom, as his predominantly female teachers at Bent had discovered.  As men hopped and groaned behind me, I cajoled, begged, and bribed John to open the door and come out.  Finally, he decided it was time to leave, and so crawled under the door, leaving the stall locked!  The collective groan moved like the wave down the line and out the door, as the latest development was relayed to those waiting in the corridor.  Back I sent him under the door, to open the stall.  I looked down at the floor where he had gone in and saw a bit of toilet paper fluttering back and forth; he was flying his toilet paper dragon in the stall again as men gasped amid muttered threats.  Finally we heard the bolt click open and John came out, satisfied, and walked over to wash his hands.  I told him this time it would be OK if he didn’t wash, but no, the ritual must be completed and to the sink he strode, ignoring the shuffling steps and groans of satisfaction.  The poor men in line; desperate, they couldn’t lash out at someone who was obviously “handicapped”, so I knew in their hearts they were killing me in a variety of ways as the irresponsible parent who had not accompanied his son into the stall.  But they were too late.  I had been so often “killed” by strangers on John’s account that I didn’t even notice the mental stones and spears that came my way.  We retreated to our seats, whereupon all four of us laughed hysterically at the way, yet again, John had upset protocol and custom.

John’s first extended role, as a sheep in a Christmas pageant at First Christian Church, was memorable.  Because he couldn’t accept that the sheep were to come on stage and sit in the background (no real sheep would do anything like that), John-as-sheep crawled all over the stage during the dialogue, shouldered his way past Mary and Joseph to look at baby Jesus, and then jumped off the stage, breaking the fourth wall, and crawling among the audience seeking pets and general shows of affection.  “If you want me to be a sheep”, he seemed to be saying, “then live with a sheep!”  Again, Russell, Courtney and I howled, in part because the directors of the play had never asked us for any extra help in rehearsal. John didn’t know what to do, and so he acted the sheep.  The directors were politically correct in including John, but they didn’t allow for accommodations, and so they wound up with a method-acted sheep.  It was perhaps unchristian of us not to have volunteered more support, but the directors did not want parental interference, and we had long ago learned that the raw experience of John was often the best teacher to outsiders.  Sinfully, we found the scene-hogging John charming.

In Mahomet, John finally got to play a lion in a Jr. High production, and spent many days rehearsing his roar and menacing us all with his claws.  In his one year of high school, John played a Dalmatian in the Christmas play, and again pronounced his line flawlessly:  “Arf, arf, arf.  The time to wake up is now!”  There were however, artistic differences between John and the director as to how a dog barked, John being of course the expert on all things animal.  To our great joy, John performed the choreography to the final song in perfect time with the others, the first time we had seen him accomplish this.  At the time of his death, he was rehearsing his part as a gang member in “Les Misèrables”.  On Tuesday evening of that last week I had taken John to rehearsal and then stayed to see if Judy and Carol needed a hand with him.  The students in the cast took John well in hand, and I was free to sit in the back and take pictures of him.  Control of such a large cast was best accomplished by the command of “freeze” at which the entire cast on stage was to freeze in place and remain quiet while the directors made adjustments.  John found freeze a great opportunity to stretch out on a bench.  The cast thought the picture of John lounging while everyone else froze like a statue wildly funny at his memorial service.  I was glad that the service gave John one more moment to be the clown.

I think John was drawn to the stage because in some way as a person visibly different, his entire life was theater.  I think he learned early on that he was always on stage when in public, and that this had both blessings and curses.  John was used to drawing attention, and he reveled in it as much as possible.  Yet, he cherished the times alone in his room, with his family, or in the bathroom stall when he could escape public notice and relax.  We rarely tried to force him out of his room to join us because we understood his need for time “off-stage.”  Even when he tied up a stall for unusual lengths of time, it was hard for me to be cross with him because I knew his need.  I am not sure his teachers ever quite understood his attraction to bathrooms, but they always found in him a willing and eager thespian, especially when claws were involved.  Theater, and the Mahomet-Seymour High School drama program will always hold a cherished spot in our heart.  It was a place where John found total acceptance and a way to develop a natural talent for imitation.  And, of great importance to us as parents, Judy and Carol accepted John unreservedly, not because of federal or state mandates, but because they believed it to be the right thing to do.  And because they thought he had talent  and they loved him.  Big squeezes for everyone.

Seasons

It has been a long time since I posted to the blog.  We have a new season added to our year.  Remember that John measured the year by several seasons:  His birthday (Feb. 14) to through Russell’s birthday (August 23) which included Easter, Mother’s Day, Father’s Day, Courtney’s birthday, our anniversary, my birthday, and Mary Ann’s birthday.  We might think of this as the season of cake and gifts.  The cake always managed to come his way, with a scoop of ice cream, and he loved giving gifts.  When he was little, he loved to give gifts that he would enjoy playing with, including a beautiful horse that he gave Courtney one year.  He couldn’t understand why Courtney put it where he couldn’t reach it; one of his first moral dilemmas.  Later, he loved to go and pick out a gift, especially for his mother, and he would unerringly find something that was perfect.  I mean, perfect without her knowing who picked it out.  One year it was pajamas, one year a cross on a chain, rings, watches.  I have no idea where he got these ideas, but he always knew what he wanted.  He and I shopped together just fine, since every minute I am in a store is one minute too many.

The second season began with the lamented return to school (“No school!”) and lasted past Halloween (“too scary!”).  John did Special Olympics during the fall, and adjusted slowly to a new grade level.  He helped do yard work, picking up sticks before mowing, and he loved using the leaf blower.  He would slip off when he felt he had done enough, and we would find him in his room watching Disney or a video.  He loved getting the dollar I gave him for helping with the sticks, and I really miss him now as I have to pick up sticks myself, which slows down mowing considerably.

The  third season began around the 1^st of November or whenever the first snow flakes could be seen in the air, and John celebrated because he knew that no more thunderstorms were likely.  This for him was the best season, as it included Thanksgiving (family and a great meal), Christmas (The Mother of all Holidays), Happy New Years, and then his birthday on February 14.  John kept all of these holidays with great joy and sincerity, and we could cheer him up whenever he was sad by talking about the upcoming parties, etc.  Around Nov. 1 I had to adjust my storytelling at bedtime to incorporate how John saved Christmas from a variety of bad guys, and this continued right through New Year’s Day.  John carefully counted the days before Christmas on an advent calendar, and he always had his Christmas list ready for anyone who asked.  Always three things, always described the same way, and heaven help Santa if all three weren’t there under the tree.  One year, one of the big three was a Grandma gift, waiting for him in Detroit, and he was almost despondent until we got up to Michigan and he found a Christmas miracle.  In later years, John disliked going to Michigan because he feared Santa wouldn’t figure out where he was.  And he couldn’t wait to get back home where he knew everything was right where he left it.

The new season stretches from February 14 until April 7 or a bit later, and it marks the very difficult time we now have between his birthday, the date of his accident (March 31) and the date of his death (April 7).  Sometimes in this period, the presence of John is so strong that I completely forget he has gone, and am profoundly shocked all over again when it hits me that I can’t hug or talk to him anymore.  This year, during this new season, I sat in our living room one day and had a hard time believing that John had ever been alive.  Of course the last one was especially troubling, and several people have offered several explanations for what might have gone on.  I don’t know which to believe, none of them, all of them?  I do know that this new season is filled with emotional extremes, and marked by the thoughts and prayers of several good and deep friends and family who remember.  That it occurs in the midst of spring semester is inconvenient at best, particularly this past semester when I taught an extra course for a colleague.  It has also been difficult to write in my blog.  Now I have several stories built up and will try to get them down and unblock the dam as soon as I can. 

Thanks to all of our friends who help us mark this new season, and thanks for all the new friends John continues to bring into our lives.

Abby

One day this difficult week a colleague and friend approached me as I walked into the Center for Liberal Arts and asked if we could talk for a minute.  We went in and sat down and she began to apologize for not having contacted us when John died, and hoped that we could forgive her.  She told me that she has a sister with Down syndrome, and that she had found it extremely hard to approach us because she could all too readily imagine what we were feeling.

Coming two days before John’s 18^th birthday, it was hard to convey how much it meant to me to have someone speak to me this way.  Earlier in the day, another colleague and friend, Nicole, had called to wish Mary Ann and I well and to let us know she was thinking of us.  At first, I was surprised to hear from her, but then realized that she had remembered John’s birthday as well, and was calling to let us know we weren’t alone.

This birthday is especially devastating to me because I can only too easily imagine how John would have been by this point, and how proud we would have been of our emerging young man.  I can see him holding down a job that gave him great satisfaction, running in Special Olympics, and thinking about whom he would invite to the prom.  I can see us arguing about driving the car or not, about keeping on in school, and fighting our way through the Social Security system to become his legal guardians.  I can see him adding a second money box to his room, this one called his spend box (to go along with his treasure box) in which he could put a portion of his hard-earned income to spend as he saw fit.  I can see him rehearsing for the spring musical at MSHS, perhaps his last performance on that stage.  Finally, I can see him perhaps agreeing to try my sleep mask as a way to get him some rest at night; if he saw how much I liked it, maybe he would want to imitate me there as well.

The thoughts that flood my mind this week are those of failure, of having failed in the task I consider the most important in my life, to raise my children to healthy, happy adulthoods.  Courtney seems fine, Russell is at least healthy and on his way, but to have not completed the task with John is to touch a pain that is unbearable.  To have failed someone dependent on you is to fear any future responsibility.  I think of this failure every day, virtually all day in this season from his birthday to the anniversary of his accident and death.  Without denying John’s role in his own death, I cannot shake the icy cold hand on my heart resulting from my lack of judgment on that fateful day, of a one-time moment of inattention that has become eternal.  That John started home that day full of dreams and ambitions and joy that it was Pizza Day and no school the next day, and then everything was gone in an instant.  An instant when, inexplicably, he was not in his accustomed place in the crosswalk.  And I was sitting on our front porch.

And then, when I feel almost driven to the point of insanity by the nature of such thoughts, the phone rings, or a colleague with whom I haven’t spoken in two years stops me in the cold and asks to talk with me for a minute.  And in that moment, just as he did when alive, John reaches across the grief and self-absorption to bring me back to his ever-entertaining reality.  Grief is an isolating force, one that lies to you and convinces you that no one wants to be near you any longer.  John ran laughing past such nonsense and just hugged and hugged.  Grief will always be a part of me, I suspect, and it is something that I learn to live with.  I listen to invocations of Heaven with some dread because I fear grief could be eternal.  Grief confuses you and causes you to call your friend “Abby”  “Pam” throughout your conversation.  And you remember John doing the same thing and saying, “Sorry, Dad” and plunging on as if nothing had happened.  Would that my own do-overs could be so simple and effective.

Isannah

Last week Mary Ann and I traveled to a nearby town to visit the Scott family with whom we have become fairly close.  Mary Ann took a job with this family as a respite care provider for several hours a week the week before John’s accident.   The Scott’s have a wonderful family, not the least of whom is their six-year old daughter, Isannah.  Among many wonderful qualities, Isannah has Down syndrome.

Last week was her birthday, and we headed down to take her a present and have some cake and ice cream with her.  We got there just as Muffles the Clown was finishing a play session with her, and we sat on the couch and watched her interact with the very nice clown.  I remembered how much John distrusted clowns.   Whenever we found ourselves in a restaurant with a clown, we would all duck our heads low to the table and whisper “Clown alert, clown alert” in hopes he would bypass our table.  John could always be heard to say “No clown!” and he meant it.  It was fun to watch Isannah interact with Muffles, though she was distracted by our arrival.

After presents, all of which but one seemed to follow a Barney  theme (another character  John mercifully disliked),  we went to the table for cake and ice cream.  Isannah finished hers early and walked around the table to where I sat with my back against the wall.  She raised her arms, and I realized with some surprise that she wanted me to pick her up.  I say surprise, because this had never happened before in our visits, and it is Mary Ann she interacts with every week, and with whom she has a great relationship. 

I picked her up and put her in my lap, not quite sure what to do with her.  She reached for a small round purple plastic brush with soft white bristles and began to “powder” my face with it.  So of course, I demanded my turn and powdered her face which tickled her, and so we were off playing “powder.”  Then she discovered my shirt pocket, and decided to hold the brush in the pocket, “hiding” it and I was to look everywhere for it, and be delighted when she pulled it out of the pocket to show me.  Most parents have played a similar game with their children, a simple dumb little game that both Isannah and I found amusing.  In fact she laughed so hard that she wet her pants, which meant that she wet my pants as well.  Everytime I  would express my delight, she would say “more”, meaning “let’s go again.”  John’s word for the same idea was “again.” And so we “mored” for at least thirty times.  Finally, I thought we had better think about getting back home, and I told Isannah that we could play “Purple Brush” one more time.  She said, “No, two more,”, and I said OK.  We finished our two more times, and she looked at me and said, “No, three more.”  Since Mary Ann and Ginny were still talking, I said OK, and we went three more times.  Finally, Mary Ann agreed we had to go, and Isannah said, “No, four more times.” Since I didn’t know how high she could count, I said “no” it was time to stop, and she climbed down and hid under my chair when we realized she had wet.   After we convinced her that it was all OK, she went off smiling to use the bathroom and change into her pajamas.

As we drove home, I thought a lot about this silly little game and how much she had enjoyed it.  I remember thinking how good it felt to have invented a little game again with a child who had so much fun.  And then, like that unseen bigger wave hiding behind the one you do see, it crashed over me:  had I been unfaithful to John?  I had never made up a little game like that with anyone else.  How would John and I have played it?  And then, there was a tremendous ache and a great desire to hold John one more time and to play any stupid little game we had made up.  I remembered right away the train ride to Chicago banging my head against the window as John laughed and laughed and said, “again?”   I remembered the pillow and balloon fights, the monster hunts, the snuggling in front of the fan. The realization that whenever the two of us were together, some sort of game was likely to break out.  How I missed that!  How I missed him.  For as much fun as Isannah and I had together, I returned home all the sadder, aching for my son.  I decided that I would have to be more careful in the future not to let myself wander unthinkingly into such a painful area.  An area I didn’t even know existed. 

This, unlike the hug from Melvin, had been a “presence of John moment” that was painful and saddening.  Things are never so simple as either / or.  This moment of  presense led me into an awareness of something that was missing from my life that I had really enjoyed, and that could not be replaced.  Making a child laugh, a thing that had been so natural and brought such good feelings would now carry with it a measure of hurt.  I vowed right there and then never to duck from a clown again.  If I were to have a clown face, like Emmet Kelly, only a sad one would match my situation. Not to stop trying, but to recognize the cost involved with so simple an act.  One does not get over, one learns to move and to live with.  Call me Sniffles the Clown.

Melvin

Mary Ann and I went to the gym where she works one evening last week.  I would mention the name, but the owners have asked that given my current body shape and %fat, I do nothing to hurt their business by claiming membership.  Actually, the gym is called Fitek, and I know they love me there because they are always looking for “before” models.

Anyway after my “workout” (I prefer the think method to Twain’s lie-down-and-rest-until-the-urge-passes method), I was pretending to stagger toward the coat-rack when Melvin said something to me in French.   “Bon soir, monsieur” I think he said.  Now, I should mention that Melvin, a fellow employee of Fitek on duty that night, is all muscle and heart.  When he asked me if that was right, I said jokingly, “Given how you are built, of course it was right.  I am not that stupid.” Those around us laughed, but Melvin didn’t.  He got real serious and he said to me, “No man, it’s not like that.  I love you, man.”  Advantage Melvin.  I was being self-deprecating to create separation, Melvin was being real to create proximity.  Alarm bells started going off.  I made some even lamer joke, and then Melvin said, “No, I gotta break it down for you. One day about two years ago, I saw a newspaper article about a boy hit by a car in a near-by town. I cut out that article and I hung it on the desk that is my space where I live. Later, I started working out here at Fitek, and then they hired me part-time.  I was blown away even later when I found out Mary Ann was this boy’s mother.” 

I remembered Mary Ann telling me this story, but I had not connected it with Melvin.   Now the goosebumps started.

“Everyday when I leave, I pat that picture with my hand, and I say ‘Let’s go, man.’” 

“John would love that,” I said. “He loved to high-five.”

“So now you see why it has to be this when I see you,” Melvin said as he spread his arms wide inviting an embrace. I walked over and hugged him.  “Yeah,” I said.  “This was also something John loved.”

I could hardly speak as we climbed into the van.  My son, dead almost two years, was still bringing people together.  But it was more than that.  Melvin had been afraid to talk about this with me/us because he was afraid it would be too painful for us.  However, before his earnestness and sincerity, in the immediacy of his concern for us, I didn’t feel any sadness at all.  In fact, I realized, I had just lived through a typical “John moment”, an unexpected time of communion with another soul brought about by his amazing ability to put very different people together.  No planning, no guile, just an awareness and openness to living in the moment.

After having lived for 21 months experiencing the absence of John, I had just practiced  the presence of John (with apologies to Brother Lawrence.)  My heart felt so full I feared it would explode.  My son had been present in that moment, my own awkwardness, my unnatural openness to others, my unusual readiness to jump at the chance to connect with another person all testifying to its authenticity.  Yet again, I had felt one of John’s greatest gifts, the ability to be both totally self-aware and totally responsive to another person.  Once again, I looked at John with wonder, asking myself if I would ever measure up to him in my lifetime.  “It’s OK, Dad,” a voice seemed to reassure. 

What a precious discovery, to learn that the newly dug pit of despair in my heart was accompanied by a new, equally deep well of joy.  As much as I had hurt in the last 21 months, and continue to do so, there is now a parallel potential for equally intense joy in the awareness that John continues to live in me.  That it is possible to intentionally practice the presence of John by remaining open to the unexpected opportunities for connection that life brings. 

I told my counselor as I related this powerful encounter with Melvin that I had not asked for 21 months “God, why did you let this happen?” because I believe that a stupid question.  What happened to John was a human event.  No, I had asked, “God, where are you in all of this?”  As I thought about Melvin, I told Feli, I realized now that God was waiting patiently for me at the bottom of the pit of despair to show me the connection to the well.  However, as I write this after more reflection, I understand that in some mysterious way beyond my comprehension, God was waiting there for me with John, holding his hand.  To paraphrase the parable, “Rejoice for my son who was lost has been restored to me.”

Melvin was working last Saturday when we went in to work out, and we immediately hugged when we saw each other.  I whispered over his shoulder, as I embraced him, “Hey, John.”

Figurine

Christmas for me this year was much more about giving than receiving.  Quite a change for me.  However, one of the most meaningful gifts I received was the figurine pictured on this page.  It came as a total surprise from Mary Ann, and it felt as if time stopped when I opened it.  It was hard to breath and tears came to my eyes because the small statue captures wonderfully the relationship I share with all of our children, but especially with John.

I took a knee a lot when the kids were younger, because I felt uncomfortable towering over them.  Moreover, I had a pretty good idea Russ would be taller than me some day, and when I am old and feeble, I am hoping he will take a knee with me.  What goes down, stays down I guess.

Because John grew more slowly, and required more attention, I know I dropped down to one knee, or bent to a catcher’s position more often than with the others.  It was important to me that I bring myself to his eye level, and that I be able to look in his eyes when we talked.  In his earliest years, it was a way to better understand what he was saying, something that my second-language training helped me to do fairly often.  Sometimes John would repeat and repeat and repeat, and because I couldn’t find the context, I would look at him helplessly and feel terrible that I was contributing to his potential poor feelings about himself.  More often, I got it the second or third time and off we would continue playing, or running, or whatever.  This communication was important, especially after reading The Sound and the Fury in which the young retarded character is essentially doomed because of his isolation.  I wanted John to know that there would always be a place to come to feel less alone and separated, a place where we would make every effort to understand him, to do more than accept the surface value of what he said.  Since he learned sooo slowly to speak clearly, he often said relatively little, and it became all the more important to pay attention to the words he produced.  Getting down on one knee, looking him in the eyes or putting my ear next to his mouth was an intimate way to reassure him that what he said was important and that I wanted to hear him.

The heads touch in this figurine.  I read in that simple peaceful gesture a reminder of how much John and I lived in each other’s head.  I found it fascinating to try to put the world together as John organized it; his logic, his cosmology were both different than mine but not wrong.  He lived close to the center of his world, and he lived close to the center of ours.  The world was a place from which he derived as much pleasure every moment he could.  That is a way of life to which I aspire.  John wasted little or no time in subterfuge, except to sneak snacks out of the kitchen:  He would pull an ice cream cup in each hand from behind his back and say “Just one, Dad!”  It was irrefutable logic.  He sweetly recited the house rule as he marched down the hall with more than his share.  It was impossible to argue with him because there was no duplicity, little guilt, no attempt to defy.  Just the glorious pleasure he felt in both knowing the rule and having more than one ice cream.  He truly had it and us figured out.  Sometimes I would insist and he would put one back, pleased to have pleased me.  Then, when we were busy in another room, he would hotfoot it back to the kitchen to get his second ice cream.  I would know this because I would find two plastic cups in his wastebasket.

Finally there are the arms.  Each figure has an arm around the other in a casual fashion as if this is an everyday thing.  That is certainly how I remember John.  Not a day went by without a hug, without some physical contact.  I am not a person who seeks a great deal of physical contact with others, so John’s willingness to hug and touch filled a need for me.  It began, I am sure, when he was a tiny little guy whose lungs were not strong enough to stay clear, so I would hold him and nebulize him.  This was a process of putting a liquid in a machine that created a medicated steam that he inhaled.  After a certain amount of minutes when the steam was all gone, I would put him on my shoulder and use a hollowed bit of soft plastic to pound on his back and loosen up all the junk he didn’t have enough strength to get rid of by himself.  I loved doing this, and welcomed the chance to hold him while doing something good for him.  The figurine creates a circle in which both learn from one another, where trust is complete.  It helps me remember a relationship beyond value that I feel privileged to have experienced.  I am so sorry he is gone but I am so joyful to have had so many occasions to take the pose represented in the figurine.