Letter to Ben ...

(with an addition to the original "Letter to Ben" written Thursday night and early Friday morning just a few days before Erev Rosh Ha Shana 5766) ...

We say so many different things to each other just before and during the Yomin Noraim: A Gut Yontif, A Gut Yor, Chag Sameach, Shana Tova, and for those of us inclined to use our native tongue rather than the 'mama loschen' or the "lashon kodesh", we say: May the New Year Be Sweet or as I so often say: "May you have a happy and healthy New Year!" And you know what? Regardless of whichever greeting or bracha (blessing) we choose, the common feature that links them all together is that they all can be effectively answered by responding "Amen!" Such a wonderful word this "amen"! It's short, clean and efficient and, in effect, says: "Yes! I subscribe to everything you have said!"

Beyond this, we pray that each of us will be inscribed in the "Sefer Ha Chaim"-the Book of Life-for the coming year-that we may be worthy enough to enjoy the *mazel, **brocho and ***chatzlacha that the New Year affords!

As a boy I remember having heard it said so often that without good health, we really have little or nothing! That one can have all the riches in the world but without good health ... well, you know the rest! So I have begun to wonder: well, what about those who will fall ill in the coming year or who, in earlier years, fell ill, and furthermore what about those- about whose fate we learn, mourn and grieve later-whose names were not inscribed ... no less sealed in the Sefer Ha Chaim? What about them?

We are all "basar v' dam"-flesh and blood-mortal beings for whom death-however untimely and premature as it does so often seem-is as integral to life as is birth itself; dialectical opposites each requiring the other lest what we euphemistically call "nature" gives way to chaos. None of this however soothes the bereaved parent! That much I know very well. As a matter of fact, I have often found myself examining my own deeds-both present and past-in an attempt to uncover what may be a possible linkage between the absolute calamity of losing Ben and my own considerable failings and flaws. Then I "awaken" as it were because I know in my heart that He does not rule over the universe in such a fashion that a child is sacrificed for the misdeeds of a parent! What a relief having realized that! For as immeasureably much as I miss Ben, I quite honestly can pin the blame on no one and most assuredly not on God Himself! or ... for that matter on the driver of the truck whose failure to signal a right turn led to ...

I even know his name and where he lives,

but for the sake of Ben whose life I love(d), may I merit the strength to live life free from bitterness, anger and cynicism, and may you Ben dwell on high enough to look down upon the clouds ... on the almost eve of the New Year, 5766 I send you the following few reflections:

Dear Ben,

It's now approaching five years ago that you left us son. That one Wednesday morning, the day before Thanksgiving, November 22, 2000, our last morning together, those few minutes that we spent chatting while I drove you to the train ... how grateful I am that the experience of that brief moment is mine, that its memory remains as vivid today as if it were that day all over again.

Life without you has been and continues to be difficult; there isn't a day when I don't think of you while pondering the many "what might have beens" though there are many moments when I smile recalling how close you and I were! Sure we had our many differences and struggles, but what father and son don't?

Though it may be true for some that time heals all wounds, I don't think the healing is ever complete and certainly not without scarring. We've all had to get on with our lives while what happened that day has left you behind; we grow older while you remain forever as young as the day you were taken from us.

Over these several years, I have spoken to many parents who have lost a child, and I've learned that each copes in his own way; I don't know how your mom has managed, but I imagine that she too has in her own way-not unlike your sister and brother and all who love you. Finding the right words to say to you Ben expresses my hope that they'll not only have particular meaning for you but a more universal message for others who might read your story. First off ... know that I loved you and will always love you unconditionally-despite all that of which I so adamantly disapproved ... it now all takes its place within the context of our lives at that time. As the older of my two sons and the eldest of my three children-while watching your sister and brother take their places in the world-the anguish I feel becomes even greater as I see the grownup sons of other men. We were all deprived of you Ben; it is just somehow so unfair! Soon ... not so many years from now, your younger brother will be older than you; your sister already is though you will forever remain their big brother!

I recall one night when you, your sister, brother and I were together; it might even have been a *Shabbat or **yom tov-maybe one of our Passover ***seders together-when the three of you were about to leave on your way back to mom's house, I kissed you on your cheek and felt the stubble of your whiskers on my lips. Funny what each of us remembers.

*Shabbat ... the Sabbath
**yom tov ... holiday; literally, a good day
***seder ... meal served on first two nights of Passover; literally: order

"... al ha Nissim ...... "

It was during Purim one year while Ben and I were delivering food baskets for the needy (the mitzvah of "matanot l'Evyonim") that it first happened. He had just eaten not more than an hour before which made it all the more perplexing and frightening. After having finished our last delivery, we were on the way home when I just happened to look over at Ben. It was then that I saw something about which I had heard but had never seen until that moment, a "grand mal" epilectic seizure. At first I thought it to be hypoglycemia, but I immediately knew that something, somehow was different. Unlike the wild and uncontrolled episodic fits of hypoglycemia, this epilectic seizure was marked by stiff robotic-like, spasmodic movements. At the time, however, I didn't and couldn't have known it to be anything but hypoglycemia. Frightened and very confused, I drove into the parking lot of a local restaurant, raced inside and demanded of the counter person that I be given a coke immediately with which, I thought, I could raise Ben's blood sugar, but by the time I returned Ben was just coming out of the seizure. He was alone for but a minute or so.

We drove home and told Ben's mom. For the next several hours, Ben suffered several more seizures. We called his doctor repeatedly! What was this happening to Ben? To us? Unless you have witnessed these seizures, it is difficult to imagine the fear and utter powerlessness that took hold of us as we watched Ben drift in and out of these horrific events. I cannot honestly tell you why we did not rush off to the hospital earlier. Finally after many agonizing hours, we drove Ben to the emergency room where just a short time later, after having heard our descriptions of the appearance of Ben's seizures, that a certain diagnosis was made. As if juvenile diabetes were not enough, Ben was now stricken with epilepsy! Over the next several days the seizures continued while the neurologist sought the right combination of medicines with which to quiet these potentially life-threaning seizures.
*al ha nissim ... for the miracles
**Purim ... Jewish holiday based upon the Book of Esther.

Postscript to "Al Ha Nissim": *Rachomim

The **sukkah is fashioned as a temporary dwelling; its four sides flimsily built, its roof thatched and open to raindrops-we dwell therein during the festival of ***Sukkot to recall the temporary dwellings of the Israelites in their forty year desert sojourn. We are taught metaphorically that the sukkah reflects the delicate and vulnerable nature of life itself, that at times dark clouds do gather overhead, the inclemency of the autumn rains at times spoiling the ****simcha of our festive meals.

It was once on a chilly and rainy Sukkot night that Ben and I-after having dwelt for a short while in the sukkah of his mom's synagogue-left together and returned home to pick up a winter coat that I had barely if ever worn. "Ben, I know of someone who could use this." Tucked away in the corner of a local storefront was the "sukkah" of a homeless man whom I had often noticed as I drove by at night on the way home. We pulled in front, Ben and I, took the coat, laid it atop his "dwelling", turned and left.
*Rachomim ... mercy
**Sukkah ... temporary dwelling of Sukkot
***Sukkot ... Jewish holiday, season of our joy
**** simcha ...joy, happiness

A Blessing, the Ocean, Ben and I

I have been thinking about this for quite a while now because there is so much more I wish to say about Ben, that I know I've yet to recall. All parents do, I suppose, have their enduring "moments in mind", those remarkably preserved "snapshots" of earlier, different and less troubled times-during which when much younger-we used to-as Ben's mom liked to say-make memories together.

I chose this photograph of Ben and me-one of my favorites-which shows us some twenty-one years ago when my younger brother Michael, Ben-then six years old, Kimmy, their mom and I journeyed on our first family vacation together to Florida. What a wonderful family time it was! A fragment of that memory baffles me though to this very day; something that I did with and especially for Ben-just he and I, but before I relate any more of the story-I should really point out that this happened at a time in my life when I was almost entirely Jewishly unobservant; in other words, i was just pretty much the sort of Jew that I had been raised to be; a sparse sunday school Jewish education, Shabbat? Oh, you mean Saturday morning cartoons! Just one Passover seder-not two and always at the home of my Aunt Iris, Olav ha Shalom, presents at Hanukkah, Rosh Hashanah and the big meal together at the end of Yom Kippur though i do not recall ever having fasted.

We spent-I think it was-one or two days in Jacksonville which was very special for me because I had never before that seen the ocean about which I was very excited. Even more special would be that I planned to behold it for the first time with Ben in my arms. We all had arisen early that morning and hurried out to the beach. Just ahead lay our special moment together! Though not entirely certain of this, I think Ben and I raced ahead of the group down to the water's edge ... whereupon he leapt into my arms, and the following words that I had previously learned and committed to memory (though I think I did have a cheat sheet!) I then recited to Ben as we gazed upon the Atlantic Ocean:

"Baruch ata HaShem, Elokeinu Melech ha Olam, sheasa et ha yam ha gadol"- Blessed are you, our God, King of the universe, who made the great sea.

"evocative of the presence ..."

I shall never forget how it was that Rabbi Joseph Edelheit pronounced the Birkas Cohanim, the Priestly Blessing, upon the conclusion of Ben's bar mitzvah some fourteen years ago. It was a moment both beautiful and kadosh! Just a short while before, Ben, his mom, sister, younger brother and I had met in "Rabbi Joe's" study to receive Ben's certificate of bar mitzvah-whilst Zac, Ben's four year old brother, peered presciently from around the edge of the rabbi's doorpost, down the hall ...

Upon the conclusion of the service but before pronouncing the "devrei brocho" (words of blessing), Rabbi Joe charged Ben with his newly-acquired Jewish adulthood, a moment made even more poignant by his reminder to Ben that his challenge would be far more difficult than that faced by most other young people. Rabbi Joe certainly was well aware of Ben's diabetes, and it seemed to me then and still now that his blessing was even more than just intensely heartfelt, but evocative of the presence of Ha Shem Yisborach!

The mood was joyous yet somber as the sanctuary filled with tears! Whereupon, Rabbi Joe-placing his hands and forehead upon Ben's bowed head-pronounced these words which God had first told over to Moshe who then told them over to Aron: "Yevarerecha Ha Shem V'yishmerecha" (May God bless you and keep you.) "Yaer Ha Shem panav elecha ve chunecha" (May He make His face to shine upon you and be gracious unto you.) "Esa Ha Shem panav elecha v'yasem lecha shalom" (May He lift up His countenance upon you and grant you peace.)

I believe that it was the merit of those words that enabled Ben to live life as well and for as long as he did.

"Diagonals"

There was of course a time when Ben was a healthly, carefree, normal kid. A boy who loved watching his favorite shows, enjoyed many friends, was very active athletically, an average student who could have done better had he applied himself more; all in all, a not untypical child growing up with two loving parents, in a nice suburban neighborhood with excellent schools and an abundance of communiy activities, one of which was 't-ball'. Now I dare say there are not many parents who have not had their own 't-ball' experiences. Indeed, Ben, his mom and I had ours! Remember what Art Linkletter used to say? That kids say the "darndest" things. Certainly true, but they do the "darndest" things as well! As parents, it is always our wish that our kids really shine; how much we want that they succeed! And when they do, it is nothing less than "nachesdik" (yiddish for that parental feeling of joy and pride upon watching their kid hit a homer or their miniature ballerina curtsey with beauty and grace.)

Well, Ben neither curtsied nor hit the homer, but it was once his turn to bat in what I do believe was his first t-ball game on the grounds of the Robert Crown Center in Evanston, Illinois. It was a summer sunday, a beautiful day, and the crowd had appropriately turned out to witness their darlings' initiation into youth baseball. Ben, I would guess, wanted not only to succeed but in a big way as well! I recall his very wonderful face as he strode up to the plate, both transfixed and twisted with determination! The ball was set upon the "t", his mom and I cheered him on; he swung and that ball let go! It flew! "Run Ben! Run!!!!! And he did ... DIAGONALLY, over the pitcher's mound, right to second base! I mean after all it was such a good hit ... why bother going to first? Despite all failed attempts to shout him back, a double he was determined to get by hook or crook! It was simply and unbelievably hilarious! A moment in Ben's and our lives unburdened, wonderful and innocent!

Postscript: A Glimpse Forward in Time

The things we do for our children-whether they be right or wrong, misguided or "right on the money"- often reaffirm the truism that as parents we do do the "darndest things." It is probably best attributed to our "nesting" instinct-that as parents our first obligation is to protect our children-to enable them not only to defend and protect themselves but also to keep them out of harm's way-both when they are still very young but even after having done some growing up. So it was that I tried to interest Ben in playng hockey with a group of Jewish men-one of whom I knew from my synagogue. They weren't so much a team as simply a group of guys who enjoyed the "rough and tumble" of ice hockey. "Perfect!" I thought for Ben: skating at which he had always excelled, hard checking against the boards, slap shots ... what could be better? Problem was that this group practiced twice a week at 10:00 pm., but for several weeks, Ben and I went-he played, I watched and on occasion fell asleep in the stands. Unhappily it did not last beyond two months or so, but back to my motive for a bit. How was this an example of my "nesting" instinct? Ben had always been very athletically oriented-I was purposely trying to show him ways by which he might maximize his strengths with the added benefit that more regular physical exertion would serve him well as a diabetic. Secondly, I was trying to demonstrate that there were other "friends choices" out there which a least, I thought, were more wholesome than those whom at that time were Ben's "friend choices"! The bottom line? Whenever I tried to choose for Ben-no matter how parentally pure my motive-it failed! He invariably reverted to his choices. Interestingly, Ben's mom used to say of Ben that he had always been a very cautious child-even from his earliest years. The kind of person who carefully surveys a new situation, looking it over ... scrutinizing it in an attempt to determine if it was right for him. All well and good, one might say! Deliberate, cautious in his moves, like playing chess with life itself. However, as parents-no matter how much we may both encourage and applaud self-reliance, a "stand-up" approach-it is often a heartbreaker to see-that despite the fact that we do know better ... life having taught us-our children, eager and detemined to exercise their autonomy, end up making poor choices, their own choices true enough but poor ones nevertheless!

Reaching in ...

Ben's personal strength was awesome though I am not necessarily referring here to his physical strength. However, had you seen him on the ice during his hockey stage racing toward you at full speed, you might have glimpsed an understanding of what it means to stand in front of an oncoming train! He was a fabulous ice skater and worked for the park district's ice rink one winter as an "ice guard" whose job it was to monitor the kids on the ice during open skating, picking up the little ones who had fallen and setting them aright.

However, to understand Ben's personal strength, we need to revisit the story of his infected appendectomy. After it was determined that his bowel was gurgling, Ben was soon released from the hospital but with an open appendectomy surgical wound. Left deliberately unsutchered, Ben would have to pack the wound twice daily with gauze and cotton and then tape the site shut. This was done to insure that the wound heal properly the second time around from the inside out.

I sat and watched Ben do this once at home and was then and remain now in awe of his personal gutziness. About three to four inches in depth and length, Ben had to reach in, pack the wound carefully and insure that it was completely filled! He continued doing this on a daily basis for several weeks. I remember that while watching him, I did not know whether to cry or laugh with pride and joy, but it was self-evident that, though life had raised the height of the bar, Ben vaulted over it with ease and grace!

" ... asher yatzar es ha adom b'chochma..."
(" ... who fashionith man with wisdom ...")

After having undergone an appendectomy several weeks before ... one afternoon, while at work, Ben called me. I could hear alarm in his voice ...
"Dad, my staples have burst and I am leaking this stuff!"
"What?"
"There is this yellowish stuff oozing out of the incision!"
"Pack it with gauze, son, and get over to the emergency room!"
I met Ben there which happens to be right across the street ... so he was able to just walk over and check himself in. By the time I arrived, Ben had already been set up in a treatment room wherein the doctor was draining the pus that had accumulated within the infected surgical wound.

Once having cleaned, re-opened and stabilized the site, Ben was subsequently transferred to the hospital where his primary care physician was on staff. There he had to undergo an emergency surgery. Happily it turned out well, but the doctors wanted to be absolutely certain that the wound would heal properly before Ben would be released.
It was while one of the doctors held a stethescope against Ben's lower abdomen that I wondered aloud ...
"So ... doc, whatcha listening for ...?
"Listening for the gurgling sounds of his bowels moving so that I know he can pass gas ..." and then it hit me ... the meaning of the brocha (blessing) that observant Jews make ordinarily upon leaving the bathroom ...
"Baruch ata HaShem Elokeinu melech ha olam asher yatzar es ha adom b'chochma ..." (Blessed are You Ha Shem who fashioneth man with wisdom ...) how often as kids and even as adults had we laughed and joked when someone passed intestinal gas ... it has long since become something about which children make quips and giggle while adults pretend that they didn't do it! But it was precisely this for which the doctor was listening, this noise so often the butt of countless crude jokes, this gurgling that HaShem had created that it would be a sign of a healing bowel! I left the room shortly thereafter, walked into the hallway and realized what an important Torah lesson I had just learned.

_ Preface to In Memory of Ben

Dear Ben,

I was there when you came into this world ...
I was there just before you left ...
We all miss you terribly much ...

Love, Dad

I do not know why Ben died that dark and terrible Wednesday, November 22, 2000; I do, however, know the 'how', the 'when', the 'where', but the 'why' of Ben's death, of our tragedy is not answerable within the limitations of the tangible world; its answer cannot be provided by the accident reconstructionist, the police officer who wrote up the report, the EMT(s) who kept Ben alive en route to the hospital, the ER trauma team who fought mightily to save him or by the rabbis whose words of comfort, whose search for meaning in seemingly random and arbitrary sufferings-however profound and well-intended-predictably fail to satisfactorily address this most unanswerable of questions.

Since Ben's death I have spoken with a good many parents who-like me-have suffered life's most hurtful loss. Anger, depression, cynicism, confusion, impairment-to name but a few-are among the typical responses to a reality so overwhelming that it's a wonder itself how well most parents hold up in the aftermath of their tragedies.

The following vignettes do not comprise a biography of Ben. They are neither chronological nor comprehensive in scope. Furthermore, they reflect how it was that I saw Ben; his mother, brother and sister would probably recall different memories and understand Ben's life differently than I.

It is with a profound sense of loss and love that I dedicate the following glimpses of Ben's life to his memory and to all the countless many who both knew and loved him. Taken together, we can see through a window whose access to light was often obscured by darkness, which was at times as difficult to open as it was to close.

In Memory of Ben, Z"L... A Series of Vignettes about My Son, Olav Ha Shalom

I thought that if I bought enough leaves on the "etz chaim"-"the tree of life"- in my shul ... all would somehow heal itself, that if I honored Ben's memory enough in the very place in which I wished he had been more often ... that I could weather the storm of grief, but despite the several leaves and foundation stone I realized that my own catharsis, my own coming to terms with my son's death would remain sadly and unnecessarily incomplete were I not to first recall and then place Ben's abbreviated stay within some sort of meaningful context. So I began writing a set of notes remembering all that I could from beginning to end from which later evolved the following memoirs.

There are quite simply no words adequate enough to convey the depth of personal tragedy that results from the loss of a child. The only consolation lies in the hope that others might benefit from Ben's example. He was the first son of Alan and Janine and the older brother to Kimberly and Zac. May he always be remembered for his good deeds, kind nature and gentle manner.

Preface to In Memory of Ben

Page "index"

Chapter 1: The Last Time

Chapter 1a: A Glimpse at a Happier Moment

Chapter 2: Asher Yatzar es Ha Adom B'chochma

Chapter 3: Tattoos

Page 2

Chapter 4: Diagonals

Chapter 4a: A Glimpse Forward in Time

Chapter 5: Lancets, Cotton Balls, Syringes and Insulin


Chapter 6: To Have His Own Place

Chapter 6a: Postscript ... Kimberly's Deposition

Chapter 7: Mazel Run Out

Chapter 7a: Postscript to Mazel Run Out

Chapter 8: Evocative of the Presence

Chapter 8a: A Moment Forward to Zac's Bar Mitzvah

Page 3

Chapter 9: Al Ha Nissim

Chapter 9a: Postscript to Al Ha Nissim: Rachomim

Chapter 10: Kindergarten Chairs

Chapter 11: Reaching In

Chapter 12: Ben ... Torah

Chapter 13: Choices

Page 4

Chapter 14: Comforting

Chapter 15: Unhealable

Chapter 16: An Act of Trust and Kindness

Chapter 16a: Postscript to An Act of Trust and Kindness ... A Baby's Blanket

Page 5

Chapter 17: Fractions

Chapter 18: Letter to Ben

Chapter 19: Shomer

Page 6
Chapter 20: An Acrostic about Ben

Chapter 21: Erev Shabbat and The Letter

Chapter 22: A B C (s)

Page 7

Chapter 23: Bais shel Emes

Chapter 24: Time Passage and Anticipation

Chapter 25: The Tenth Plague

Chapter 26: Mourning's Reflections

Page 8

Chapter 27: Thanks to My Friends: "Bentzi" and EliDov ... Zac's Letter Found

Chapter 28: Shem Tov-A Good Name

Chapter 29: Learning Lessons Late

Page 9

Chapter 30: Fragments

Chapter 31: Halfway

Chapter 32: " ... Who Endured Illness with Majesty and Grace ..."

Page 10

Chapter 33: I Wish I Could Have ...

Page 11

Chapter 34: Standing at the Edge

Chapter 35: " ... In a Better Place ..."

Page 12

Chapter 36: How Many Children ...

See Table of Contents, Page 2.Chapter 37: "27"

Chapter 38: Grief Progress Report

Chapter 39: I Was Just Beginning ...

Chapter 40: Ben and Zac

Chapter 41: Michael, Kimberly and Art

In
Memory
of
Ben

by

Alan D. Busch