Attempting to mend the chaos

I just finished a book by a hero of mine.  "Against the Dying of the Light", by Leonard Fein.  Chances are you probably don't know who Leonard Fein is, but you might.  He served on the board of a couple of the organizations I have worked for in the past.  While he considers himself a secular Jew, he is deeply entrenched in the richness of the Jewish community.  He expresses his Judaism less so through a worship of god than through a devotion to "Tikkun Olam" (repairing the world).  In his book, he quotes Emmanuel Levinas, the French Jewish Philosopher.  "'To know God, is to know what must be done.'  In that sense, feeding the hungry is a form of worship. (In Hebrew, the word 'Avodah' means 'Service', both in the sense of work and in the sense of worship)."  This is my take on Judaism.  I have never given much thought to God (except on airplanes or on crowded Israeli buses in times of Intifada), but I have lived "Jewishly" in my desire to help repair the world.  Fein is the founder of Moment Magazine, and Mazon: A Jewish Reponse to Hunger.  He is engaged in an ongoing mending of the social order and a quest for social justice.  He is someone who inspired me as a graduate student and beyond... and he is a bereaved parent.  This last fact about him is not something I knew until a couple of weeks ago.  During one of my daily internet investigations, where I google all things related to my loss including, but not limited to - SIDS, metabolic disorders in infants, siblings of SIDS + survival rates, life after death, Near Death Experiences, grief, loss, resources for bereaved parents....you get the picture, I came across the title of this book.  This book about a father's loss of his daughter.  This book by Leonard Fein, who I never even knew lost a child.  Now, he doesn't know me from Adam and my worship of him has been from afar (just like many of his Jewish student disciples).  I could hardly wrap my brain around such a GOOD man, of whom I knew nothing until the early 2000s, having lost his daughter in the mid-nineties.  Can someone actually move forward enough from a loss like this that they continue to care about changing the world, when the world has done them such an injustice?  I can't imagine going back to a place where I care about mending the world when I can barely imagine the mending of my own heart.

There are pieces of this book that have helped me to articulate my experience in a way that was unavailable to me.  While I have cried out loud among others and in the emptiness of my own home, "Why Me? Why Us? Why Max?", I have been met with no answers - from counselors, from doctors, from god.  Fein talks about where this comes from - "Back in the hospital, the chaplain apologized: 'I have no answers,' she said.  And I replied, 'I have no questions.' Not 'Why?' or 'Why her?' or 'Why me?'  These are not questions, they are cries of anguish.  For surely there is nothing we know by now with greater certainty than this: Every moment of every day, the spinning wheel stops somewhere that it is not supposed to, somewhere that makes no sense.  Every moment of every day, somewhere, a parent is bereaved, a child is untimely orphaned, a dream dissolves.  This time, the wheel stopped here."  This time - the wheel stopped with Teddy, Maxie and I.  There are no answers, even if the questions remain with me for a lifetime.

The finality of Max's death - of his being gone from me, from my arms, from my protection FOREVER.  It is incomprehensible.  I keep thinking - If I can just get through this part......  What part?  This part is the rest of my life.  I have to just get through this life.  And, when the comparison comes from others of losing parents and grandparents and other loved ones of greater generations, I feel misunderstood....though I know the deepness in that grief as well.  "The utter sadness adds, I think, to the incomprehensibility of what happened.  And that incomprehensibility, in the end, is among the most distressing and enduring aspects of the tragedy.  Over and over again, I review the events of that day.  Over and over, I come up against an impenetrable wall.  There is no way around that wall, no way to tunnel under it or climb over it, and it stretches endlessly.  No, I do not feel that way about my mother and father.  They were buried at the end of life's path.  And though I cannot walk that path, they are where they are supposed to be.  Not so Nomi (his daughter)."  Not so Max.

At the end of the book, Fein writes a letter to his granddaughter, who was only 16 months old when her mother died suddenly and unexpectedly.  Here is where he answers my question as to HOW he can go on soldiering for justice and good in the world, while suffering so great a loss.  "There is one thing of which we may be absolutely certain: If we react to apparent randomness, by withholding our kindness - after all, what purpose do these serve if all there is, is accident? - we add to the world's chaos.  And it's true: There is no guarantee that our effort for good will change anything, will have any enduring impact.  But the absence of a guarantee is not an argument. On the other side, our refusal to enlist in the ranks of the worldmenders, whether in large ways or in small, ensures that the world will go unmended."  While it breaks my heart to know that it is families like Gavin's who are committed to bettering their community for other families, while themselves in the midst of their own tragic loss, it is precisely the randomness of this loss that urges families like ours to "enlist in the ranks of the worldmenders".  In a world where we don't know what horror (or blessing) may next befall us, we are obliged to continue on a path to at least TRY and organize the chaos - to prevent more of these blunders or to at least bring happiness and joy to those who can still enjoy them.

For me, the personal chaos feels too large every day to mend.  I spend most of my waking hours trying to understand what happened to Max so that I can prevent the same thing from happening to Baby M.  I wish I could surrender, as everyone else around me has, it seems.  I wish I could simply say, "He will be fine" and leave it there.  But, that isn't good enough for me.  I have to KNOW he will be fine...something that it seems, I cannot possibly know.  And, yes, there have been those who have been quick to point out that we never know what will happen next - there are random accidents, and shootings and natural disasters.  This is true.  I know it.  Am I the only one who can admit that this situation is different?  I haven't yet had an honest conversation with anyone about Baby M.  A conversation where we actually sat down with the risks and the numbers and tried to intellectually understand what Baby M's chances are.  Too scary I suppose.  Nothing scarier than what has already happened.

Still, I know I won't make it if I had to go through this again.  Would I still be standing and here physically?  Perhaps.  But, I would likely be "done".  The parts of the original me that still exist would be gone.  So much of me already gone when Maxie passed.  So, part of my need to save Baby M, is the hope that I can save myself.  Perhaps even regenerate some of who I used to be.

I heard from the UCLA lab this morning.  They are processing Max's blood.  They still don't know if the sample is "good".  They decided to try and process it regardless.  They are making an exception in  using Max's blood because they usually only run this test with "fresh" samples.  Not possible in the case of a dead baby.  I am trying to be patient.  Trying to feel hopeful.  Trying to calm the chaos in my mind.  So far, I am failing.  But, every day is a new opportunity to try.  Today I will try again. For the sake of my marriage.  For the sake of my sanity.  For the sake of the little kicks that I feel inside of my womb - reminding me that hope is on the way.