John

Push Back

As long as we walked the horses I was fine.  I had already slid off the back of the mare going up a steep hill.  All of the other kids were experienced riders; it was a riding club, after all, to whose outing near Hillsdale Michigan my cousin Steve had invited me.  I was really nervous on the way to the wilderness area because I was not a good rider.  In fact I had fallen off every horse I had ever been on, including a pony that I could almost step over. Steve and his family had taken two horses to the Wilderness and I knew he owned one saddle.  I assumed, correctly, that I would have the blanket and he the saddle.  Perhaps it would even be the same blanket on which I was sitting as I slid off the mare into the ditch the last time I had visited Steve.  My aunt laughed and laughed that time. She said she had looked down the road and seen my horse trotting back to the driveway without me nor the blanket; we were invisible in the ditch.  She couldn’t figure out where I was.  I didn’t bother to tell her that Steve had kicked his horse into high gear as we came up the road to show off for the family, and that my horse had followed suit.  Unfortunately, Steve had given me no warning that of what he was going to do, nor any riding lessons for that matter.  So, the ditch was inevitable.

Anyway on this second occasion, again without any instruction of how to ride a horse up a steep incline, I was on the ground, much to the relief of the horse.  At the top of the steep tree-covered slope, Steve decided I would ride his horse, a smaller, more spirited male, and so we switched.  I now had a saddle.  All of the other kids were uncomfortable waiting for the tenderfoot to find some way to not slow everyone down.  I rode on with the others for several minutes following the top of a tree-less ridge. As we approached the top of a sharp hill, the line of riders veered off to the left and began to descend back to the valley floor near the lake.  As my skittish horse arrived at the crest of the hill a racing motorcycle burst over the top of the hill headed right toward me.  The horse reared on its hind legs—twice.  The second time, I flew off and landed hard in the dirt.  Soon I found myself back on the mare and rode back to camp more angry than humiliated.  This time my aunt marveled at the fact that I kept getting back on the horse when I fell off.  It was simple, I told her:  it was too far to walk.  Don’t quit; push back.

I am mindful of this aspect of my character as we move out of the holiday season.  It is not a facet of my personality of which I am particularly proud; when I am pushed I push back before I stop and think about it.  However, as I move through the grief of losing my son and close friend, I now find myself angry and tired of all the sadness, all the misery, all of the grieving.  I have described the grief process as a struggle through a thicket of thorn bushes; no matter which way I turn, memories, guilt, a broken heart tear at my sense of self.  And I have finally reached a point where I am mad and inclined to push back.  With the help of my counselor, I have been able to realize several ways in which I have been pushing back.  Writing this blog.  Working hard with the counselor to notice and confront hurtful feelings while thinking about what may have triggered them.  Using a movie about Down syndrome in two of my courses.  Listening to my family.  Returning to a more typical holiday season.  John never quit; the least I can do is honor his memory by pushing back myself.  We often tried to find a way for John to push back so that he would continue to feel empowered.  I, too, find pushing back works against the feeling of helplessness that began as I sat in a hospital for a week watching me son die.  I marvel that it has taken almost two years for this need to resist this crappy event to surface.  I take it as a marker that I am moving and that is good.  I cannot envision an end point to this movement, but I am relieved to know that the spark of resistance has not gone out.  Perhaps the way out of the thicket is to begin with that spark and burn it down.

Christmas II

This has been our second Christmas without John.  Last year Mary Ann and I sought to avoid as much as possible our usual traditions for fear the pain of John’s absence would prove too overwhelming.  At first we tried to do nothing to celebrate Christmas, but the need to celebrate became too much.  We cut down a tree in Mansfield where we go every year, but we put it in the family room away from our traditional spot in the living room.  We couldn’t bring ourselves to break out our traditional ornaments, so we went to the hardware and bought a couple sets of new ornaments along with strings of large garish colored lights.  I also decided to hang all of John’s Special Olympics’ on the tree; they made very bright shiny ornaments.  Courtney had two friends stay with us along with herself and Russell.  For us it was a very different Christmas.

My family has always made a big deal of Christmas, and all of our children learned from us to make it as special as possible.  My own particular excitement came from both the anticipation of Christmas Eve and the magic of the Christmas stories, whether of the Nativity or of Santa’s rounds.  Russell talked about “upping” his presents when he was little.  Courtney loved the story of the “Littlest Angel”.  John was taken by the entire holiday.  As I have written before, he began counting the days from Thanksgiving, and he was suddenly a very cooperative young man. 

We all have our favorite or memorable John Christmas stories.  One of them involves a Christmas here in Mahomet where John opened his presents throughout the entire day.  He began along with the rest of us at about 7 or 8 (late for us in those days).  We all took turns opening a present, and when John opened his (a video, I think), he ran down the hall to his room, put it in his Video/TV and settled down to watch it.  We all called for him to come back and open the rest of his gifts with us, but he was adamant that he was going to watch this video before he did anything else.  After an hour and a half he came back down the hall to the living room where we all sat surrounded by our open presents and picked up another of his.  He opened it (a book?) and then fled once again down the hall to read it several times.  Next a toy, and once again he went off to play with it.  By lunchtime he had opened just a few gifts and the older kids were stupefied.  Didn’t he know that discovering what was inside the colorful paper was the best part of Christmas?

John was never afraid to go against tradition.  He sought in each moment the essence of what was fun or good or enriching and didn’t allow himself to be reigned in by abstract things like “We do it this way because…”  And this from a boy who treasured his own routines.  Bedtime was a ritual, getting up in the morning happened the same way everyday; he never went to bed in a messy bedroom having put everything back in its place before he got into bed.  However, on Christmas morning, our traditions and rituals were not sufficient to bind him.  We all agreed that he had discovered the absolutely best way to avoid the Christmas letdown.  By stretching gift-opening throughout the entire day, he discovered that he could extend that magic for at least 12 hours.  Ever since we make sure to take our time to enjoy the moment.

On another occasion, we took the entire day to open presents, but that was because we had spent the entire day in the emergency room of a Detroit hospital where John was being treated for pneumonia.  We had gone to Michigan knowing that John was not feeling real good, and once we arrived he got worse and worse.  We tried to sleep Christmas Eve, but John kept Mary Ann awake all night with his coughing and retching.  Tradition-bound, we tried to open presents holding John on our lap, but he finally broke tradition again by vomiting all over my mother’s couch and our Christmas cheer.  Mary Ann rushed him to the nearest hospital while I settled the other two kids down and reassured them that all would be well.  I told them to keep Grandma company and to open their presents while I rushed over to join Mary Ann and John at the hospital.  Once I got there, John was being examined by the emergency room staff who determined that he had pneumonia (not his first time, unfortunately) and he was given a shot of penicillin against which he fought.  Then we settled down to wait for the medicine to kick in; they wouldn’t discharge John until they were sure the medicine they had given him would bring his temperature down and until he could keep water down in his stomach.  It was about three before we got out of there.  Mary Ann took John on back to my mother’s while I sought out a pharmacy open on Christmas Eve.  Eventually I made it back home with more medicine and we finished our Christmas bleary-eyed but happy that John was feeling better.  That was the last Christmas we tried to celebrate in Michigan for many years.

This year we decided that we could best honor John by returning to our traditions and including his spirit in our celebrations.  We put our tree in its traditional place and we brought some of the ornaments down from the attic along with our traditional small white lights.  I did not put John’s medals on the tree, nor did I put up the sillier decorations I usually do.  We spent a quiet Christmas remembering John and celebrating the many good things that continue to happen to us.  There were several sad moments for me as I missed my special friend who so closely shared the spirit of Christmas with me.  

Tribute by David Borst

Remembrances are as much about the person who is

remembering as they are about the person being

remembered.  Our remembrances of John are no

different.  John was woven into the fabric of our

lives with the rest of the Matthews family.  We knew

the Matthews long before John was even a twinkle in

Jim’s eye, having met them when Courtney and our son

Doug met in a pre-kindergarten school.  A chance

invitation to play provided the fertile soil for our

friendship, which grew stronger as our children grew

older and we became fast friends.   John’s arrival

brought joy but also challenges and his entire family

met these challenges in a marvelous way.  We felt

privileged to watch them enfold John in their lives.  

The Matthews children often visited  at our house, the

kids enjoyed being together. Frankly, we have no idea

what chaos ensued when our children visited the

Mathews – and it’s probably best that we don’t.  But

we can attest to the havoc that occurred when

Courtney, Russell, John and Rocket descended on ours –

and the good times began.  The volume suddenly went up

to high, the cats scattered (not to be seen for the

duration of their stay), the screen door banging

incessantly as kids/dogs went out, went in, and went

out again.  When John was very young he often ended up

sans pants at some point; we still remember those pink

little buns racing up the back stairs to look for the

cats that had long since ’gotten out of Dodge’. 

Sometimes he would play with the other kids; often he

was happier playing by himself.  He found his favorite

things and industriously assembled them – the ceramic

dog in the hall,  the iron pig, the Brahman bull under

the piano, the stuffed penguin in Ali’s room.  He knew

just where they all were  and  he would line ’em all

up in a row.          

We have many rich memories of time with the Mathews. 

Many Easter, Thanksgiving, and Christmas dinners,

where John taught me that a fine meal always had LOTS

of mashed potatoes (and only Jim knew how to mash them

the right way) and LOTS of ice cream (an insight that

I already had, but didn’t mind having reinforced). 

Long walks after too much food, with John racing

ahead.  John curled up with Jim for a ‘post-prandial’

snooze on the couch.  A visit from the Matthews one

summer when we were on Cape Cod – John swimming at

Stoney Beach, walking through our flower garden,

eating ice cream at Ben and Bill’s.  Life was good.   

If a poem is like a person, then surely a person’s

life is like a poem.  I think John’s life-poem was

elegant and graceful – filled with the joys of

laughter, loving, and being loved.  Gary Snyder once

wrote that when man and nature are in harmony, we will

always have ripe blackberries to eat and a sunny spot

under a pine tree to sit.  And this is how we imagine

John:  He is sitting in a sunny spot under a pine

tree, laughing and eating ripe blackberries –

certainly with lots of ice cream.  And with such

thoughts and memories, life is still good.  

Scrooge

Today in church we realized Advent had begun and our new-but-not-yet-fully-installed minister preached on how many blessings we receive during the advent season.  I didn’t hear much of it. During the sermon, he showed a video of a couple that lost a child soon after birth, and now some ten years later were in Guatemala adopting. We belong to a “happy” church, and those of us who continue to grieve the loss of someone close to us find the holidays, and in my case Christmas, very hard to deal with.  Where one might hope that church would be a haven or a source of comfort, I find quite the contrary, that I fit in even less at Christmas because I have not yet found the happy ending to this story I began writing 17 years ago. 

I am far from “bah, humbug” but I can see how Dickens pushed Scrooge to the limit by leading him through a series of deprivations.  Some of these were of his own choosing, but it is not hard for me to imagine the twisting effect Scrooge’s experiences would have on his character.  If one learns from childhood that life is a series of mean unfeeling encounters with fate, then one is not surprised to see the resulting shrunken twisted soul.

John loved to act out the Marley scene, and would wrap himself in a chain he found in the garage and stand in front of the French doors, which gave his image just the right translucent appearance.  He would clank his chains and say “booooooooo” and generally scare the wits out of Scrooge, unfortunately also played by John Matthews, esq.  So he would freak himself out before breaking the spell, and then starting again.  He could do this for as long as we could stand to hear it over and over and over.  He loved the Muppet Christmas Carol and permitted no laughter during the Marley scene (“Jacob and Robert Marley”) because he understood that as goes Marley, so goes the production of the play.  When the rest of us would laugh at the Muppet’s fairly faithful rendering of this crucial scene, John would grow indignant:  if Marley wasn’t “scary” (one of his most serious epithets) then Scrooge’s joy on Christmas morning would not convince.  So, properly chastised, we would oohh and aahh whenever Marley appeared, and then laugh while John was running down the hall to get his chains.  Back he would clank, sometimes wrapping a bit of cloth around his head, to stand before the French doors and study the mechanics of ghosting. 

I thought of these things as I sat in the audience and watched IWU’s wonderful production of Scrooge.  Dickens’ tale overwhelms this eminently forgettable musical, and yet the IWU production drew every ounce of magic and cheer from it thanks in large part to the keen eye and bold staging of director Tom Quinn.  John would have loved this show.  Russell played the Ghost of Christmas Yet to Come, which would have given John many difficult nights trying to puzzle out how his beloved brother could play a character so “scary.”  But it was the magic that John appreciated in the Christmas season.  Sweet smells filled the house, sweet treats lined the kitchen counters, presents magically appeared under the tree, some with his name on them.  Compared to such wonders, ghosts were nothing, and I think John understood this.

 In short, John was the embodiment of Tiny Tim, the cheerful broken lad with whom Bob Cratchit had such a special relationship.  John refused to be discouraged at Christmastime, and he lived in fear of the “Santa phone” through which exasperated parents could connect directly to Santa’s workshop.  He loved me to tell him again and again fantasy stories of how John saved Christmas or visited the North Pole.  He watched Tim Allen movies about Santa Claus every chance he could.  He lit up as soon as Thanksgiving was over, and stayed lit until it was time to go back to school in January.  Like Tiny Tim, John’s holiday spirit was infectious.  To watch him eagerly count down the days on his advent calendar each year was to understand that in spite of all of the hokum at this time of year, there was a foundation of something spiritual that John tapped into.  He seemed to know that Tiny Tim was destined to become the special favorite of Scrooge as well, and that his ailment was to be cured. 

However, I realized as Scrooge unfolded that I live in the alternative Christmas future that the Ghost Of Christmas Yet to Come foresaw in which the crutch stands unused in the corner next to Tim’s little stool.  I am the Bob Cratchit sitting at the table, bravely encouraging his downhearted family to honor Tim/John by remaining true to his vision of Christmas, having just returned from the cemetery where Tim’s grave looks out over the river.  There is no beneficent Scrooge whose untold wealth can alter the course of history.  There is the pain and the longing and the constant reminders of a joyful light extinguished, of one less Christmas candle to light our hearts. 

And yet, I found a verse of Malachi (4:2) today while half-listening to the sermon that reminds it is not to Scrooge that we look:  “But for you who revere my name, the sun of righteousness will rise with healing in its wings.  And you will go out and leap like calves released from the stall.”  Christmas is infused with an indomitable spirit, something Dickens understood.  I taught this to John and now he continues to re-teach it to me.  Perhaps the candle has left our hearts so as to go before us and light our way through this and every holiday season.  So, may all of you who read this celebrate the most calf-leaping Christmas you have ever had. May the prize turkey await you in the butcher’s shop (also played by Russell), and may all those in need find healing wings.  Let us all feel deeply and cry and laugh in our broken places.  Let’s read A Christmas Carol and enjoy the fantasy of the crutch that is thrown away.  Most of all, let’s remember without fear and in these memories realize, like Scrooge, that John and Tim and all the others are never more alive again than at Christmas.  

It is in the last 50 yards that the athlete’s character is revealed.  The first fifty yards they typically run together as a bunch so that no one stands out.  It is in the last 50 yards when the course begins to slant upwards that will is more important that athletic ability.  The five or six snow shoers are typically matched within a second or less of one another, and the last 50 yards usually determine the winner.  It is whoever can keep going despite the cold and the wind and the fatigue and the sudden resistance of the uphill course. Two years before, John had pulled away at about 40 yards and won going away.  I was so busy filming that I forgot to cheer as John crossed the line and won his first state gold medal in snowshoe racing.  

Two years later, February 2006, John was newly 16 and now was grouped in with adults.  There were men twice as tall as John in his heat in the finals, men who looked like they were 25 or 30 with long legs and determined faces.  John looked like the smallest one in the field.  I hated to think about him trying to keep up with these big lugs.  He hadn’t really trained this year, and had only run once to get a qualifying time from Coach Ed. He had been playing team basketball, running up and down the court. He had come up a day or so early with Ed to run his preliminary; this was his first time from home for an overnight by himself.  It felt odd in the house with all of the kids gone; we hadn’t really experienced that since John was born. 

When Mary Ann and I got to the mountain near Galena the next day, it was the day of the final and John was thrilled to see us.  Ed and Mary Ann got him in his snowshoes while I snapped pictures.  No matter what the weather might be anywhere else in the state, it was always cold and windy on top of the mountain during the Winter Games.  We took John down to the start area and stood for what seemed like hours.  We decided John was too cold in his coat, so he put mine on.  I asked him if he wanted to wear my big ugly green gloves because they were warmer and his yes was enthusiastic.  So I stood with him without a coat, and with no gloves waiting and waiting and waiting for the volunteers to get the heats lined up seven deep.  Finally John was called and we knew he was only six races from his big moment.  He stood in my coat and gloves, an IWU ski cap pulled down over his ears, hands in his pockets, relaxed and looking like nothing if not nonchalant.  Me, I was on pins and needles, but John just stood patiently, watching the ground,

John didn’t become involved in Special Olympics until we moved to Mahomet in 2001.  Before that, John had gone to the IWU pool two to three times a week while he was growing up in Bloomington.  Once we got involved however, John was a busy guy moving from snowshoeing to track and field to bowling to basketball as the year rolled around to snowshoeing again.  There was a rhythm to it, and I think that was one of the many things John liked about SO.  Most of his school friends were also in SO, so he had ready-made network here.  Coach Ed held practices at the fieldhouse attached to the high school and kids and parents followed his directions.  All were included, all participated, all earned medals and ribbons. 

John loved to run and in track and field he ran the 100 meters and the 200 meters.  In basketball skills he passed the ball above a line on the wall, dribbled through cones, and shot baskets from six places marked on the floor.  In bowling, John did not use bumpers but he hated the noise of the bowling alley.  He only bowled one season, but he won a state medal in Peoria.  He won state medals in track and field, once racing against his best friend James Walker from Bloomington in a two-man final.  In his last year he got to play team basketball coached by Ed, and though he thought running up and down the court was the purpose, he did score several baskets in a game.  In his last 200 meter race, John slowed and stopped when we cheered him near the finish line.  He finished third and got bronze, but couldn’t wait to show us his new prize.

From all this activity, John got dignity, pride, confidence, and a sense of success.  He was able to run like any other kid and win medals.  He went to meets and was called an athlete.  Pretty girls gave him hugs after his races.  He spent time in an environment where he was honored for participating and treated as a hero for finishing his races.  He never complained about all of the practice and activity, and he loved to spend time with Coach Ed.  He didn’t like being cold, but he stood uncomplaining in both regional and state competitions while he waited his turn to run.  He hated the starting gun, and always plugged his ears until after it went off, so he was almost always the last one off the starting line.  He liked the lunches provided at competitions, and never left anything on the plate.  He learned in these races never to give up, never to stop trying until the race was over.  He had heard the phrase “Try again” so many times in his life already, we never even had to say it in SO as it was part of the athletes’ creed:  “Let me win, but if I cannot, let me be brave in the attempt.”  John lived for just this sort of opportunity to show everyone he could be brave.

Just about the point where the course started to slope upward, John surged into a small lead and steadily pulled away, another boy named John hot on his heels.  I stayed by the start line so as to not distract him, and so I didn’t know that he had won the race until he came back to the medal stand, hands in his pockets, nonchalance returned,.  On the stand, he was business-like, proud, and acted like he had been there before. Which of course he had.  I was never prouder of him than after that race because I knew he had won with guts and determination; I told him yet again he was my hero.  As we rolled down the highway back to Mahomet, he called his brother and sister both at school and told them he had won another gold medal. 

That medal is still with him.  When the funeral director was ready to close the casket prior to leaving for the cemetery, he asked if I wanted it back.  I said no, that the medal was to me the essence of John, and that he had worked too hard to earn it.  It would have meant a lot to me to have it.  But it was John’s and it belonged with him.

Never doubt for a minute the value of Special Olympics to athletes and families.  We always need volunteers, and there are few more rewarding activities you can give your time to.  I say “we” because even though we have lost John, we are SO lifers.  Could I imagine doing anything less after his example?

John’s brick in the Memorial Garden, Normal, Illinois.  

Love Cakes

I have changed medication recently, and it appears to have cut down on my early morning dreaming, so this may be the last dream to tell for awhile. However, this dream is so strongly related to one of the qualities I most admired in John, that it makes me happy to relate it.

In this dream, our family was picked up by a special train (not unlike the recent Christmas Train movie, Polar Express) in our backyard and we were taken to the sea shore, which for some reason was spelled out as the Jersey Shore. We have visited the Jersey Shore once with our old friend Don Conant, and I presume that trip is somehow tied into whatever memories or feelings generated this dream. Anyway, John sat on my lap, reminiscent of another Christmas train ride to Chicago where John and I made up a singing game that we played throughout the rest of his life. On this fantasy ride to the Jersey Shore, I remember Courtney getting into a wrangle with the conductor about someone not having paid, but débrouillarde that she is, she managed to extricate herself before she got put off at the next stop. I think she even volunteered to be put off (Courtney is always about doing the right thing), but the conductor seemed to realize her integrity and let it go. She and Kevin were sitting in the car behind ours for some reason.

As we came along the shore, (a flashback to our California trip Oakland to L.A.?) John and I were busy pointing out all of the wonderful strange animals lined up along the shore. We saw and delighted in zebras and leopards, and then several groups of what we believed to be prehistoric polar bears, animals we had never seen before. John and I were thrilled to discover this unexpected view of exotic animals on the shore playing in the surf.

When we arrived at our destination, it turned out to be a resort amusement park. There were rides and such, but John and I were most fascinated with the small booths that filled the center of the walkway. We stopped by one where the proprietor controlled robotic lizards and alligators. John was both drawn to them and dubious of them. It reminds me of the time he saw the movie A.I. and he remained shaken for weeks. No matter how many times I reassured him, he continued to fear that he was a robot. “No robot!” he would say over and over. In this dream, he reacted in much the same way I had seen him do many times before: be fascinated by the “animalness” of the toys, but repelled by the possibility that a machine could be alive. This was an area where John wanted clear lines drawn.

Other booths offered wonderful things to eat, sticky buns and candy. As we all gathered back together at the end of our day, John was very excited about the possibility that he could someday own a booth like those we had seen. The park director was intrigued, and she asked him what kind of booth he would like to have. John, of course, wanted to sell something to eat and had decided on muffins, or some type of sponge cake. The director then asked him what he would call the things he had for sale, and John replied “Love cakes!” The director was delighted and began to make plans to put John in business; she knew she had a winner.

Several things stand out in the dream. First, of course, the marvelous nature of the park and the feeling of wonder I felt as we visited. Then, the attitude of the director who was not patronizing or indulging the poor little retarded boy, but rather saw his instincts as a sound business investment. She took John absolutely seriously, something we wished had happened more often in his life. Finally, the invention of the name of his product was 100% John.

I was fascinated all his life by the names he gave things. Of course he aroused my professional curiosity when he would put his own name, and thus his own interpretation on things. Birthday parties were always “Happy birthday parties”, and Christmas was always “Merry Christmas.” “How many days until Merry Christmas, Mama?” was a question he began asking at Thanksgiving. I have already talked in a previous posting about “dome” as his first word, standing for ice cream and ice cream cone. “Sghetti” is obvious, reducing the sounds to the least necessary for understanding. “Sockies” I think came from the difficulty in pronouncing the “x” sound, and since his socks were always small, it fit. Long pants were “big boy pants”, though shorts were “shorts”. “Michigan” was “Let’s go Blue!” and “steak” was “juicy steak”, taken from a song in “Bye Bye Birdie.” “OOoooo, that’s gotta hurt” was an all-purpose phrase for when anything or anyone got knocked down, like football players on TV or plastic army men in one of our rollicking games of Lincoln Logs. We have a great video of Courtney and Russell mowing John down sledding one day in Bloomington, and even when John saw that, he’d laugh when we would all say his catch phrase together. “Sky beautiful” meant it was a blue sky, and the first thing John did each morning before he reached for his microphone to sing Pharaoh’s Song was to open his shutters and search for sky beautiful. The minister in church was never Reverend, or Pastor, but always “your friend.” When he was little, his word for his rear end was “bupp”, and one memorable day at the mall, he walked around the concourse tapping people on the rear end and saying, “bupp, bupp, bupp, bupp, …” Mary Ann met the most interesting people that day…

What I loved about John in all of this, what I admired in him was his refusal to be shut out of the world of language because he had difficulty with speech or vocabulary. As I must have mentioned already, the speech therapist was upset with me because I didn’t correct John’s “dally” to “daddy”, but how was I going to turn even his words of affection to mistake? And, gradually he came to understand that we shared an exchange that the other kids did not: “dally” and “Johnlee.” Linguistically, I was always willing to meet him on his turf that I found poetic and highly descriptive. There was little ambiguity to John, a refreshing transparency that his language conveyed. It was a wonderful world to visit, exotic animals, love cakes, and all.

Still more dreams

I am disappointed that my illness over the summer has kept me from keeping up with this blog. Certainly the grieving process has not stopped and waited while I have been trying to recover my vision. My doctor believes that the papilledema, caused by a sudden surge in hypertension, is due to “suppressed grieving” during the academic year last year. I am perfectly willing to concede that grieving has affected my physical health, but I also think the rigors of teaching six courses a year has been a factor. To go back to full-time teaching at six courses per year, with all of the attendant unspoken responsibilities, something I haven’t done in many many years was perhaps possible before John’s accident, but is proving to be almost more than I can handle. And when 5 of the 12 courses in two years are brand new courses, well, I think I have been fairly stupid about this.

In recent weeks, I have had more dreams about John than at any similar period since he died. In part I think this is due to the counseling I am receiving which is leading me deeper into an understanding of what is happening to me. Another factor must be the medicine I am taking for hypertension and depression, plus the bloated brain feeling I have had all summer, which cause me to sleep longer. I think I remember most of these dreams because they are occurring in the early morning dawn hours. So, here, fairly quickly are some of those I have experienced.

The first dream in this series is a bit vague and fuzzy. John appears in the dream dressed in red, and less than his full size. He is more like an icon than John, and I have been referring to this version of John as an “action figure”. My interpretation of this dream is that I am sending myself a message that almost a year and one half has gone by, many people I encounter don’t know or don’t remember, and that in some ways John is slipping away from me. I cried as I interpreted this dream, and came to understand how much of the grieving has been about me (duhh!) and my complete inability thus far to let go of John. I have read that it takes parents various amounts of time to let go of a child that has died, and given the intensity of our relationship, I am not surprised that I am far from that stage yet. Part of it is certainly stubbornness on my part. John didn’t get his willfulness just from having Down syndrome; in this he was my son. I do not want to let death win, I refuse to let something take my son away from me. And yet, my subconscious, attending to my health, is reminding me that too much stubbornness may not be good for me.

As soon as I had finished interpreting this dream, I had another with a vivid image of me with my arm around John, exactly as I remember him, his eyes cast down as I explained something to him. Invariably on these occasions, John would end with “OK, Dad.” Even if he didn’t fully understand, he would say “OK, Dad”, I assume because he never wanted to seem deficient in front of me. And I was always very careful to never let him feel deficient around me. However, this meant when he got older and more and more able, he often surpassed my assumptions about his abilities, and in the last two years, I was pulling way back to let him teach me about what he could do. I still explained things in three steps as always, but he would supply more and more of the steps. So I think this dream was about reassurance, that nothing could erase the relationship we had, and that perhaps John was in a place where he didn’t need things explained to him all the time.

The third dream was another vivid image. In this one, John was standing inside the storm door at the back of a house. He was wearing a dark coat (perhaps his Incredibles coat?) and had some sort of messenger bag over one shoulder with the bag at the opposite hip. He didn’t say anything, he didn’t smile, he just looked out the door. I can’t be sure if the storm door represents separation (glass as barrier) or access (glass as window). Probably both. It certainly would be a wish fulfillment for me to see John again and know that he is OK. He looked like he was ready to leave, to go on a journey. The feelings surrounding this dream left me feeling somber and sad. John looked so serious and so unmoving. I was sad to think that he might be going somewhere.

The fourth dream is the most vivid, and the longest. I dreamed that it was time to return to school (a season in France known as “la rentrée”) and that I was back at IWU for the Fall Faculty Conference. Many, perhaps most, of the faculty and students had spent the summer serving in the National Guard, and faculty were wearing their field jackets with appropriate patches and symbols. I had not served, and I felt jealous in the dream that I didn’t have such a jacket. There were two auditoriums side by side with a connecting door in between. The one on the left was a traditional rectangular theater with straight rows of seats and some sort of stage at the front. I believe there were heavy velvet curtains drawn across the stage, and the room was very brightly lit. The auditorium on the right was heavily Victorian in décor, with small conversation sites set up around the room composed of overstuffed couches and chairs with wooden arms, area rugs, and dim table lamps with pendant crystals. I went into the auditorium on the right and thought about joining a group of faculty, but realized I probably would take a seat they intended for someone else, and so went to another furniture group by myself. Up on our stage, a shadowy student dressed in black with a cowl covering his face was entertaining. Suddenly, someone came up behind me and told me that John was coming home by train. (I forgot to mention that everyone came to the conference by train; the conference hall was also a train station.) John was coming back from a year of trying to live on his own, to see what he was able to do by himself for a year. I did not feel excessive joy at this news, but was deeply concerned that John would not want or need me after his year of independence. I stood up tentatively and began to move worriedly toward the train platform. Here the dream ended. There is almost too much to analyze in this dream; I do note my insecurity at the idea of confronting an independent John. It is a further iteration of the tension between not wanting to being separated from him even as we worked all his life to promote as much independence for him as possible.

The fifth and last dream involved our having sent John away to a “special” boarding school. I could not understand in the dream why we had sent him away, and was very unhappy about it. I went to get him, perhaps for Christmas break, and I found myself driving then walking across a snowy frozen prairie. I had no clothes on, but didn’t seem to mind if anyone saw me. I came to a house, and wanted to go in to get out to the cold, but something in disarray in the house warned me off. When I brought John home, it was raining. We lived in a very large two-story house. As we drove up, Mary Ann and Russell and Courtney were waiting in the driveway ahead of us in the rain. I pulled up under a carport about thirty yards from them, and told John that there was no need for us to get wet just because the others were. When we went into the house, I took John into his new room (we had moved since he went to school) and he said joyfully, as clear as a bell, in just the way I remember him saying it after a trip, “my toyyyysss!” I had resolved not to send him back after break as I could not bear the separation. I felt joy at having him home, and great peace at having decided to resist everyone’s wishes, and to have him home.

These dreams evoked a range of feelings, and have kept my counselor and myself busy trying to keep track of them. I go to bed earlier than I ever have in my life, I no longer read before I fall asleep, and I anxiously await the next John dream. Here is one place I can still be with my son.

Runaway

It has been awhile since I have last written to the blog. I have been under the weather with papilledema, a swelling of the brain related to malignant hypertension. I do not know why my blood pressure shot up at the beginning of May, but my physician would like me to think it has something to do with John. Maybe. I know I was not as disciplined about my diet during the first year after his death, a discipline I am now obliged to re-develop if I wish to avoid potentially lethal future episodes. How ironic that John died of brain swelling; every time I think of my own condition, I am transported back to the ICU at Carle where John lay helpless in a coma for six days as we fought to reduce the swelling in his brain. Thus my recent condition has been doubly sobering.

John was well-known in both Bloomington and Mahomet for his wandering away from home or parents. This led to a great deal of tension in our family as our most common question to one another at any hour of the day was “where is John?”. I think these particular phenomena led to the onset of my white hair.

The first time John wandered off, he left his day care down the street from us and was found by my secretary on her way home. He was standing in the middle of a very busy Main Street in Bloomington as rush hour was beginning. The day care provider, who loved John, had just been showing us earlier in the week how she had installed a lock her front screen door so that none of the kids would get out. Of course this proved no problem for John the puzzle-solver. The great irony of this event was that Mary Ann and I were at John’s school, fighting with District 87 about including him in his local school. This event rocked us to our foundation. There could be no peace if John could escape from a devoted sitter who installed a lock specifically to keep him in.

The second time John wandered off, he left from our house early one Sunday morning. I had gotten up with him and then Mary Ann came down to get some coffee and head over to First Christian Church early to work on something or other. Before she left, I headed upstairs to get a shower, and when I came down, John was nowhere to be found. All the doors were closed, he was not in our fenced backyard, and I assumed that he had gone with his mother to play in the nursery. I got dressed, got the other two kids up and ready, and we set out for church in time to make Sunday School, which started about 9:30 or so. I was sitting in class and Mary Ann came and sat down beside me after finishing her chore for the first service, and she mentioned that she had not seen John in the nursery. I looked at her astounded, and told her that I hadn’t brought John. After a moment’s recognition of what that meant, we rushed out of the classroom and raced home, looking at all the streets on the way. Once home, Mary Ann called the police while I drove all over the neighborhood between our house and church, trying to think where John might have gone. There were no cell phones in those days, so I had to check back in at home periodically, and on once such stop, Mary Ann said that John was at the police station downtown. I rushed over there, and confronted a police officer who was concerned that it had taken us at least an hour to phone in the fact that he was missing. I told him the story, and he reluctantly agreed that we had not been unduly negligent. He said that he had picked John up on Market street, about two blocks from the church. 4-year old John had almost made it walking to church on his own! The officer was also upset that Mary Ann had spoken sharply to him over the police radio or the phone because she was outraged that he would think we had not taken good care of John. So I apologized for her and reminded the officer that she was frantic with worry. The next day Mary Ann went down to the police station with a picture of John and alerted them that he has special needs and was prone to take off whenever we let up for a second. I put a new hook and eye near the top of the front screen door, and we vowed to keep all doors locked from now on. The policeman gave John a stuffed animal and I almost hugged the breath out of him. For the second time, John showed no awareness that he had done anything wrong. He seemed neither worried, not upset, though he was glad to see me.

On another occasion, John walked around the block from our house on Madison Street, and crossed the very busy Center Street to the gas station behind our house. There he went in the store, boosted a candy bar. Mary Ann thought to look for him over there because they had been walking over there together that summer, and sure enough there was John walking around the store. When Mary Ann got him home, she found the pilfered candy bar. Back they went, to give it back over John’s protestations, and when they did, the clerk said, “Oh, that’s no problem.” Once again, someone thought they were being nice to John because he was special. Mary Ann told her, “Well if you are going to encourage him, then at least take our phone number if he shows up again.” And he did. John was an enterprising young man, unafraid to assert his independence.

I am skipping over the many times John got to the end of the block, or around the corner and neighbors or former students found him and brought him back. As he got older, he became more and more aware that he wasn’t supposed to do things like this, but Courtney and Russell could walk down the street, so why couldn’t he?

John’s longest or worst walkabout occurred on a hot summer evening. The kids were in front of the house trying to find some shade, and I was headed to a CIDSO executive meeting in South Bloomington. John didn’t want me to leave, but I managed to get him distracted and drove off. Mary was with him, and the other kids were close by. After I left, Mary Ann tried without success to get him to come in the house. She had to run in to check on something about to burn on the stove, and when she went back to the front, he was gone. He was wearing only a pair of shorts, no shirt, and no shoes. By the time I got home an hour or so later, he still had not been found, despite the searching of six or seven squad cars who were helpful beyond belief. I joined them, and drove all over the west side of Bloomington, without finding a trace. Several friends joined us, and we had more than 10 vehicles driving up and down west-side side streets, trying to find this kid. As I drove, my heart was in my throat and I kept imagining some horrible person driving John along the freeway to St. Louis or something. It was awful. We all prayed, but it was very hard to stay positive. Finally, a police officer called to say that a couple on the far west side, on the other side of the railroad tracks had found John and brought him to the police station. John had told them his name, address and phone number (which we had made sure he knew) but the couple could not understand him. He came back in the back of a police car, and this time he looked abashed. We were so relieved that no one could bring him or herself to scold him. We believed he had scared himself good and so we got his supper together and sent him off to bed. It took days to recover.

A last escapade in Bloomington. I got a call at IWU from the Student Senate President who was at Monical’s on Main Street in Normal that he had seen John walking along Sugar Creek towards the restaurant. By the time I got there, he had crossed the busy street and Greg had cornered him at the nearby gas station. He had been wearing boots, and one was missing, so I assumed that he had gotten stuck in the mud along the creek, and couldn’t get it back. We never found the boot. He was one to two miles away from our house and had crossed several busy streets and had followed the creek under several bridges. It seemed that no matter how vigilant we were, no matter how much we secured the house, John was going to always escape our imagination, as he did in crossing the street outside the crosswalk on March 31, 2006.

John wandered away several times in Mahomet, though nothing quite as dramatic. He walked off after school without waiting for his mom in Junior High, and got to the very outskirts of town where friends found him. He would not get in the car with them (Yeah, John!) but he let them guide him home. On another occasion, he followed his mom into the store after promising her we would wait in the car while she ran in to pick up a few things. She called me on my way home from Bloomington, and I raced over to the IGA to join the search. The fire department was about to drag the river next to the store. I asked if anyone had looked in the store, and I found him right away in a far back corner playing with stuffed animals. After all of these escapades, it was good for once to be the one who found him. On another occasion, he got on a school bus with a friend of his, and rode out the route before we all realized what had happened and the driver dropped him off at our house. One last time, a teacher told him to give his gym shorts to his mom to sew up, so he walked out of school, went home, and waited for Mary Ann to come home. The teachers finally figured out where he was, but when they came to the door, he wouldn’t let them in!! Yeah John!

I always took this to be John’s unquenchable spirit expressed through his desire to explore his world and to not let the world separate him from those things and people that he loved. It was humbling to know that on several occasions he was looking for me. To be the object of that much love was daunting. I only hope he knew that I felt the same way about him.

Cemetery

Later the day John died (just after midnight on Friday, April 7, 2006), Mary Ann and I found ourselves on the side of a hill at Riverside Cemetery, next to I-74 in Mahomet, writing a check for $1000 on the fender of a pickup, buying a cemetery plot. The county official mumbled something about how lenient they were about plants on the plots, though he did point out one he felt was “too much” where people had planted bushes in front of the headstone. The imperative that appeared to rule was “do not impede the mowers.”

After the funeral, it was very disturbing to visit the cemetery plot without headstone and stare at the freshly filled-in grave. The soil is typical central Illinois hardpack clay, and so it was piled like brown lumps of coal in a mound. And you realize that the mound is caused by the earth displaced by the coffin that contains the body of your precious child. So you hate the mound.

It took us almost a year to find a headstone (and be able to afford it). I have already posted pictures of it, so I won’t belabor it except to say that it was almost completely covered by one of our snowfalls this winter, and that is not a happy experience either.

When we were in New England last summer I bought a paper spinner to put up by the grave, and we also placed a solar-powered yard light because John never ever slept at night without a light on. I used a gift certificate someone had given us after the funeral to purchase a silk flower arrangement of red, white, and blue that served us well for both Memorial Day and July 4. John’s favorite color was blue (“Let’s go Blue!”), so that worked as well. All throughout the spring and summer of 2006, we waited and watched as the mound slowly settled. Or, more likely, was washed down the hill in the heavier storms.

After the winter, what remained was a flat space of clay, packed hard like concrete in which a few sardonic weeds grew. And here, for me, one of the deep feelings of living with John kicked in: my son was not going to be the only plot on this part of the hill that didn’t have any grass growing. Now, to be fair, there were a few other bare graves, but they were recent additions, and we were no longer newbies. Just as we didn’t want John’s delays to hold him back, so now I didn’t want his bare plot to make him stand out as neglected or uncared for.

So my mission now that school has let out has been to grow grass on John’s cemetery plot. What an ordeal! I took a hoe and dug up all of the clay, broke it up as best I could. I put down some grass seed and I haul two gallons of water up to the grave from the car every day and water the plot. So far, nothing has grown. Mary Ann earlier this spring planted some blue wild flower bulbs and her vision is to cover the plot with blue flowers. I love that idea, too, though I hope they don’t “impede the mowers.” However, all we have cultivated is a patch of gray hardpack clay. Last Saturday while I was spraying water on my patch of grass, our “neighbor” Ed came to see his wife’s plot. He walked right up and introduced himself, and at first I was afraid he was from the county and was going to object to my using a sprayer to put water on things. (I don’t know, there is a bewildering amount of officiousness to all of this.) Instead, he told me that he had thrown some grass seed on our plot last week, as well as on his wife’s that was as bare as ours. He told me he had been trying for two years to grow grass without any luck. So in thanks, I used up the rest of my water on his plot where some shoots of grass were showing. Sunday, Mary Ann went with me, and on the way back to the car we sprayed water on a flower basket at the grave of a girl who died at age 13.

Today, still no grass shows, though I will keep hauling water until something happens. That is also a lesson learned from parenting a child with a disability. You have to keep hauling water every day, even if nothing shows right away; with faith and patience, something will. I realize that I miss the discipline of having to haul water for John every day, even as I chaffed at having to do so. There was a feeling of usefulness in helping him to interpret the world daily that is a significant void in my life. So, unlike Bobby Kennedy, I don’t think about why there is no grass. I think instead about getting two gallons of water to the plot every day, and leave the rest to greater powers. Oh, and the girl’s basket of wilting flowers? Today the flowers were the picture of health, and I gave them another shot. So at least one small part of death is brightened. You claim all the victories you can.

Another Dream

This is a special bonus issue to celebrate having posted 10 articles in this series.

Early this morning I had another dream about John. As is becoming distressingly common, I woke up about 4 a.m. and thought the dog needed to go outside. When she couldn’t be bothered, I came out to the living room and turned on the TV. Last night Mary Ann and I had watched Forrest Gump on TBS, but at 4 a.m. there was nothing anywhere near as interesting to be found. I sat up for awhile, realized I was still tired, and went back to bed. I dreamed about John in this period.

In the dream, Mary Ann and I were at some kind of convention, and while there we found John again who had been missing “for about 4 months” as I told someone in the dream. He looked just the same, was sitting on a chair next to me at the table, and was eating his breakfast. I remember talking to someone at the table about it, and somehow knew that John had been living with another family for this time. How he came to be lost to us was not clear, though I strongly suspected he had been abducted. He was very happy to see us again, though while he was eating, he was indifferent to my talking about his absence. I realized that he had missed Christmas with us and I asked him in the dream how he had spent Christmas, but he gave no answer.

As you might imagine, the overpowering feeling during the dream was one of peace and fullness. Our family was back together, John was safely restored to us, and we knew where he was and what he was doing. This feeling of contentment overrode any curiosity I had about where he had been and what he had been doing. It was a wonderful feeling, and lasted for several minutes before I woke up completely and felt that crushing weight of reality that he was gone for good.

I have no real good interpretation of this dream beyond the obvious: I wanted to see John again and through my imagination, did so. I find the word “restore” significant, and wonder if I was also seeking a greater restoration of my own person. I was obsessed when he was alive with where he was at any given moment, and in the dream confronted an occasion when I didn’t know the answers, but that John was fine. Christmas was one of John’s favorite holidays, and celebrating this past season without him seemed very bizarre and unsettling. John’s eager spirit animated all holidays for us, especially those on which he got presents! My feeling in the dream was that John could have answered that question about where he spent Christmas, but that someone interrupted his answer. As for his having been abducted, I remember that being a terrifying suspicion the first time he wandered off for a significant length of time. John’s wandering escapades will be a separate post in and of themselves, but the first time, I was deeply afraid that someone had taken advantage of his trusting and compliant nature.

The shock of recognition upon fully waking is the second thing I will most remember about this dream. For a few moments, John was back with me and I felt myself again. The realization that he has been gone almost 14 months not four, and that there was no real chance of seeing him again was painful beyond words. It is our new reality that every evocation of John carries both pleasure and pain, the joy in celebrating his existence, and the misery of the finality of death. It is a constant negotiation with one’s self as to how much remembrance to permit, balancing the joy to fulfill the need to be with him against the sorrow that involves. Perhaps I had not been allowing enough remembrance in recent days, and my sub-conscience was re-balancing the scales.

In any event, it was so good to see him again!