Last week, I sat shoulder to shoulder beside a mother whose arms were full of curly haired two year old. The audience had been asked to squeeze in closer together to accommodate more show goers to the school's winter music performance, and somehow I got lodged between her and your dad. She tried to make small talk with me and, well,... even the most surface chit-chat quickly leads to you, my love.
My stomach churned to be forced to casually answer the dreaded question aloud, to lump you in with the dead, with your brother B.W. It is still so wholly absurd, so wrong, that you are not here with us.
The woman's toddler son bounced in her lap, his excitement bubbling over, when one of his sisters took the stage. His mother shushed him gently as he pointed and called out her name. The little boy seemed to be in awe of his sister while his mother beamed with pride.
We ought to have had moments like that one, Zachary.
It is our second Christmas since you died, and it is still so disorienting.
Familiar holiday traditions, the excitement with which we used to approach them, seems to have been shattered right along with your perfect little body, almost two years ago. Again, I could not bring myself to pull out the old artificial Christmas tree, the lights, the collection of ornaments, the myriad decorations, the playlist of Christmas music - all of the things that used to mean something to us. Again, I couldn't bear to resurrect the tree in memory of your brother, or even any of his old ornaments; the implication that we add another memorial tree for you, our other dead son. All of the old accoutrements to Christmas just feel like a sham, like they belong to another family, not ours.
Participating in the "Christmas spirit" (not to be confused with celebrating the actual meaning and spirit of the historical first Christmas) feels foreign to me now. I don't recognize it. I don't understand it. But, for C.T.'s sake, because he is still influenced by the stuff of Christmas, and by the enthusiasm of his friends and classmates around the holiday, we did buy a small live tree this year. We delayed and delayed until a little over a week ago when the pickings were slim, so it is truly a sad, needle-dropping, specimen. The tree is decorated mostly with handmade/hand-painted ornaments in your memory, a few new ones in memory of B.W. and of course, some crafty ornaments made by C.T. This seems to be the only way I can tolerate a Christmas tree, something remotely festive, in our home.
Christmas would be so different if you were here, Zachary. I look at photos of C.T. on his second Christmas, when he was almost two years old, and I'm desperate to know, to concoct, to connect your 14-day life with, who you would have been on this day, in 2015.
Like a fool, I keep wondering, pining.
I love you and miss you. On Christmas. Every day.
Stay away from me
with your twinkling lights
your jingle bells
your festive decorations.
Tone down your
giddy anticipation that
has virtually nothing to do with
marking the birth of Jesus,
and more to do with a couple days
off of work, the loop of carols
you can't stop humming,
how irresistibly cheerful the house looks
sprinkled with red and green.
It is certainly not
the most wonderful time of the year.
Doesn't my once healthy son
writhing in pain,
misdiagnosed,
treated unforgivably late,
bruised - to death - from the inside out,
make any difference?
How can the same old
holiday rituals make sense
ever again?
I can never go back.
I don't know what to do with Christmas.
He would be twenty-three months old today.
In one month, we would be
celebrating his second birthday.
I should be planning my boy's
birthday party.
For as long as I've been a bereaved mother, whole, in-tact families have bewildered me.
They play together, eat together, bicker and make up afterward. I hear them talk about planning things together as a family. They casually refer to their sons as the boys. The children confidently declare how many kids they'll have when they grow up. Birthdays and holidays are happy days and are celebrated with ease and excitement. The difficulty in taking family photos amounts to will the little one get dirty, or fail to cooperate, or both? Together, the family endures the difficulties, disappointments and drudgeries of life, each one accounted for and tucked safely into bed at night.
That scenario of wholeness is long gone for my own family.
To contrast the holes in my family to the completeness of others tends to be a slippery slope into a pit of bitterness..., and it takes a great deal of effort, and an emotional toll, each time, to climb out of that pit. So, I limit my exposure, I keep an arm's distance from, the wholeness and happiness of others. I do it to protect my broken heart from deeper despair and disillusionment. I believe it's a normal and acceptable way to cope in the face of traumatic, unthinkable loss.
Since Zachary's death, there is a fresh, and often confusing, source of externally-induced pain for me.
Now that the hard-earned, re-calibrated life we created in the years after B.W. died has been shattered -- too -- it is even difficult, sometimes, to look the lives and stories of the once-bereaved in the eye. It is like looking at my former self in the mirror.
The once-bereaved people I know are my dearest friends and the most compassionate, wonderful people that exist in this world. Some are people I've connected with via my blog (and theirs) and the support groups I attend. Some are women I worked with over the course of five years to plan and prepare our town's annual walk to remember. They are friendships and authentic connections I've made around the globe, and I am eternally grateful to know each of them. They are courageous, beautifully broken people, living and coping with the awful reality of having lost a child.
But sometimes I lose the strength to bear witness to their stories. You see, I remember the years after B.W. died, when my loss was singular. I remember the emotional toll of those early years of grief, and the persistence and courage it took to learn to live with such unfulfilled love for my child. I remember surrounding myself with people who could relate, and gradually, begrudgingly, coming to accept B.W.'s death. I remember how bittersweet it was to welcome C.T. into our life. I remember the new and tentative hope, the zest for life, that he gradually redefined in my heart. And while I grew to understand I would never be healed of my grief for B.W. in this lifetime, nor would I ever feel safe from tragedy, I remember coming to know real joy again and believing that life could truly be good again. I remember the explosion of joy and gratitude I felt upon welcoming Zachary into our incomplete, but happy, family. In those days, life was truly as good as it gets for a once-bereaved family.
I watch that scenario of my former life (that ended on January 20, 2014) play out over and over again as I witness the lives of the once-bereaved people in my life, and as I read and absorb many of the virtual stories of other bereaved people I've come to know and respect. Some of them almost perfectly personify that as good as it gets life that was briefly my own. Somehow, the new life they have created, are creating, remains in tact, while my whole world has been shattered, again, with Zachary's death.
Every bereaved parent deserves her resurgence, her renewed hope, her hard-earned, bittersweet happiness..., and all of her subsequent children. But, after Zachary's death, it is no longer my story. That life, for me, is gone.
*****
I know exactly four people in the world, personally, who have lost two children in separate instances. One reached out to me (virtually) in the early months after Zachary died, initially via a loss support site, to share her own story of the loss of her two children. I have read her emails thousands of times, just to remind myself that someone is surviving a similar existence. Another is a woman from one of my support groups who lost two adult children. When we talk, I recognize her grief fatigue, her distrust and cynicism about the future. The twice-bereaved mother I've known the longest is a woman I met while attending a support group, after B.W. died. She and her husband were with us at Zachary's bedside after we learned of his brain hemorrhage and the recommendation to remove his life support. While I couldn't believe death was coming for another of my children,... of course, I am sure she could.
More recently, I've connected with a woman whose story very closely mirrors my own. She lost her firstborn, a son, seven years ago, and a daughter, her third child, just over six months ago. Her surviving daughter, now five years old, is in kindergarten, the same age C.T. was when Zachary died. Like C.T., her surviving daughter is now flanked by dead siblings. Only dead siblings. Like our family, there will be no more children.
She lives in another country and so, we've figured out how to make good use of phone calls and texts. We share in the mockery of living in this tiny microcosm, where lightning has struck twice, taking two of our beloved children. Together, we mourn the fact that our reproductive journeys both started and ended with tragedy and death. How's your eldest? Dead. How's your youngest? Dead. We cope with our loneliness and longing, and the loneliness and longing of our living children who thought (hoped) their younger sibling would be with them for life. We share in the experience of the mostly well-intentioned, but often hurtful, support from people who have a hard time wrapping their minds around what the accumulated loss of two children can do to a person. We grieve the loss of our own hope for the future while we try to maintain some scraps of optimism for the sake of our living children, who have already suffered so much at such a young age.
A couple of weeks ago, she marked the seven year anniversary of her son's death, and on the very same day, there happened to be a memorial service scheduled at her church where her daughter's name was be read aloud, as part of remembering recent deaths in the congregation. When she told me, I could have cried with her all day long. Two memorials, for her two dead children, on the very same day. Like me, a lifetime ago, she'd planned to have her youngest daughter participate this year, and every year going forward, in remembering her brother's anniversary. And instead, her daughter is dead too.
*****
Sometime during the first few weeks after Zachary died, I remember someone saying to me, maybe a few people separately saying to me:
Well, of course, you'd never wish it on anyone.
Or
You'd never want someone else to know this pain.
There was a heavy fog in those early months, but I remember my guttural, pained response very clearly. I remember choking out the vile words...
I would wish this on ANYONE BUT ME. ANYONE BUT ZACHARY.
I am not proud of it. It sounds ugly, even evil, and of course we don't have a choice in whom tragedy (or twice the tragedy) strikes, but my gut response is still true, twenty-two months later.
In the years after B.W. died, I would have said yes, this pain is so horrendously awful, I'd never want anyone else to experience it in my place. In my grief, I became that heart-cracked-open, more compassionate, sacrificial person, who mostly rose to the occasion of her awful tragedy.
But then the universe laughed in the face of my once-bereaved, recreated life. Twenty-two months ago, my burden became double the loss, when Zachary died in my arms. I would have wished his suffering and death on anyone other than my own family, if it meant he would be here with me today.
I miss the person I was one lifetime ago, the one who wouldn't wish this on anyone.
B and I attended a parent-teacher conference this morning, to review how C.T. is doing in school. She talked to us about the typical stuff - his academic performance, his test scores, his behavior. All good. Then she showed us some of the writing he has done in class, including this one...
My special object is a bear. My family calls him Bearson or Zachy bear. Before my brother Zachary died he gave it to me. Before he died he was 2 weeks old. I have had Bearson for almost 20 months. I sleep with bearson almost every night. In the morning sometimes I bring (him) downstairs and put him next to me at breakfast.
I am thankful C.T. felt safe enough to bring Bearson to school and to write a few sentences about (at least) the surface significance of this particular special object. He looks proud in the photo. I envision him having composed his words without shame, with the honesty and confidence we've tried to nurture in him since his beloved Zachary died.
Then, with a look of concern on her face, C.T.'s teacher showed us a craft project they worked on, something that will decorate their second grade "pod" outside the classrooms, for the fall season. Each student was given a construction paper pumpkin which folded at the top to reveal another pumpkin underneath. The kids were instructed to write a few simple clues on the front of the pumpkin so that other students could guess whose pumpkin it was, before lifting the cover, to see how well they know their classmates. His teacher gently asked us if it was okay for her to put C.T.'s pumpkin up with the rest of the class.
I don't remember what the other two or three clues were, written on the front of C.T.'s pumpkin, because all I saw were the words:
I have two dead brothers.
All B and I could do was shake our heads in sorrowful abandon. It is true. It is terribly unfair and sad and one of the primary things that defines him (and us as a family). It will continue to define him as he ages without his brothers, particularly without Zachary, by his side. And it is certainly a unique characteristic, a distinguishing attribute between C.T. and his classmates. My boy, he is so smart and thoughtful and honest.
It was not an elegant or socially acceptable way to speak his truth. But it is also salt in our deep wounds that C.T.'s reality is not acceptable, that it is perceived as needing some kind of sugarcoating to be palatable, to be out amongst the other, simpler, carefree pumpkin clues.
We've talked to him about using the word deceased rather than dead, which he does a lot in public, verbally with adults, only because society is uncomfortable with the latter, particularly when you're talking about the death of a child. That kind of thing was reinforced, as an unfortunate necessity, by the grief camp he attended during the last two summers. I'm guessing he didn't immediately know how to spell deceased, and because we talk openly about his brothers at home, he decided to lay it out there like he did. He is seven. I hate that there is there is this tendency to think we need to coach him to smooth over his endlessly difficult reality for the transitory comfort of others.
Our instinct was to tell C.T.'s teacher to let it be, to put his pumpkin clues up with the rest.
What is the alternative? Tell C.T. he must re-think his clues because it makes the teachers and students in his pod uncomfortable? Make him re-write his clues, changing that single word - dead to deceased - just so that it's at the threshold of acceptable? Tell him that he should come up with other distinguishing characteristics, delete the difficult one because it is just too sad for people to read? Lie to him and say that the intent was to stick with simple, less meaningful, clues... My hair is red or I like soccer or My dog's name is _____?
Dumb it down, C.T. No one wants to know about the reality of your family.
I would love for this not to be an issue. I would love to have had C.T. sail through his childhood, holding hands with his brothers, spewing only rainbows and butterflies into the halls of his grammar school. I would have preferred he learned about unfairness after being chosen last during kickball or through a lack of recognition after a job well done. I wish his first experience with suffering had been much less personal and tangible and permanent, that he was able to keep a safe distance from real pain during his childhood. I would much rather he learned about the reality of death through the loss of a grandparent, followed by the loss of his parents someday - gentler, more orderly rites of passage.
Honestly, I am glad C.T. is building his confidence in talking openly about his love and his grief and his brothers. Last year, during first grade, he would come home and tell me he cried about Zachary, all alone, in the bathroom. He would mostly write about Zachary at home where he felt it was safe to unleash some of his painful emotions. So, truly, I am proud and pleased about how he's doing. It's just that this (more public) integration of Zachary's death and the fact that his siblings are both dead leaves all of us exposed and vulnerable for judgment and at least some self doubt.
(B's father died yesterday before I could finish this post. His is no longer suffering and lived a full and vibrant life for most of his 67 years. It doesn't seem right to elaborate or edit or change the tense, in the context of what I initially wrote, and so, my words remain unfinished.)
*****
Fentanyl, one of the many drugs pumped into our son's system during the last six days of his life, is absorbed through a patch on my father-in-law's chest. The drug's name is printed on the metallic surface of the patch in a uniform and repeated pattern. The name, the number of milligrams, over and over again. A narcotic to sedate, mass produced, in sticker form. It looks like an iron-flattened candy wrapper. It is supposedly keeping his pain at bay; the agonized and tormented look on his face says otherwise.
I flash back to Zachary's hospital room in the middle of the night between Wednesday, January 15 and Thursday, January 16 of 2014. There is such mass chaos, there are so many unexpected interventions, that the IV tubing running various drugs into the body of my son is twisted and tangled. Between emergencies, one of his two nurses says they must hand label the lines so that there is no confusion when changing the bags. I cannot stop weeping and trembling. I am still trying to understand how any of this is happening at all, how my previously healthy son is now being eaten alive by lethal bacteria. I see her handwriting, the word Fentanyl, slightly slanted to the right with a capital F, all other letters lowercase, wrapped around the clear tubing. In desperation, I cling to her neat handwriting, her desire to organize, to make sure there are no more mistakes or accidents in the care of my son. I tell myself to believe, I pray, that her diligence will help my suffering boy.
*****
B's dad is dying and everything about it intersects painfully with the trauma of losing Zachary. I watch him struggle to live through his last weeks and it looks so much like Zachary's suffering. His moaning and restlessness, the distant, suffering expression on his face. The inability to understand what he needs, to know how and where he's experiencing pain. The helplessness to do much of anything to relieve it. The shifting position to prevent sores and to try to keep him comfortable. The rattled, mucous-ridden breathing. The spiked hair, fresh from a sponge bath, almost identical to Zachary's but for the silver. Evidence of a much longer life lived.
Familiar end-of-life phrasing: mouth care, the power of touch, mottling. The need to hold his hand and tell him, assure him, it's okay to leave us. How utterly horrifying it is that we actually said those words to our two week old baby boy.
I want Zachary.
I want to feel his grip tighten around my neck when the hay ride lurches forward, unexpected. I want to dress him in his first puffer jacket, see him laughing and kicking his feet through falling leaves. I want to watch him twist and pull an apple from a tree, taste the sweet crisp fruit, right there in the same orchard where his older brother did. I want to interrupt his naptime, gently tell him we need to walk down the street to retrieve C.T. from school. I want to see his tired eyes, his crankiness, melt away with the excitement of seeing his brother. I want to wipe his runny nose, mend his cuts and scrapes. I want to take him to pick out balloons to release, presents to donate, a cake, in memory of B.W. I want to bring him with me to care for, and say goodbye to, his dying grandfather.
Where are the people who prayed? Where are the people who assured me he was going to be fine? Where are the people who told me the story of their much-sicker child who survived? Where are they, damnit?
What do they have to say now, 20 months later?
I want this Zachary-shaped hole filled. Unfasten the shackles from my wrists and ankles so that I can go and find my boy. Release me from this agony.
In one month (from yesterday), my eldest would be nine years old.
In the newsletter from one of the support groups I attend, his upcoming death anniversary / birthday was acknowledged, and in the age column, was assigned a [ ]. As in blank. No attained age.
It hurts. It hurts. It still hurts.
I loved him, carried and nurtured him, readied everything in our life and our future to accommodate him. Labored and birthed him, stared in awe, and in utter devastation, at the beauty of him. My gorgeous, one-of-a-kind son.
*****
People who birth living babies are allowed to say things like...
We are so in love, over the moon, really.
He is everything to us.
We cannot imagine life without him.
We believe them. After that baby takes his/her first breath, we allow the parents their full measure of unconditional love for their child. We affirm how valuable the new little life is by showering the family with gifts and congratulations. We cry tears of joy with the new parents.
But, we, mothers and fathers of silently born sons and daughters, when we try to give voice to our unconditional love and our devastating grief, are told...
Sometimes "these things happen".
It is sad, but you can always have another.
How can you love, and grieve for, someone you barely knew?
Love for our child - diminished, denied, squashed. As if our child was just an idea, just a twinkle in our eye, not a real and loved family member.
*****
Careless words have been uttered to me, time after time, over the last almost nine years since B.W. died, more often in the time since Zachary died. Oftentimes, someone thinks they understand, thinks they can interpret my feelings, much more than they actually do. Some people decide they must tell me their opinion. Sometimes the words seek to file away my dead children into some kind of ranked order and my grief and pain into neat and distinct categories of loss.
But, this..., Zachary's death... was different than B.W.'s.
Oh. They expected Zachary to survive? I figured there was a chance, some hope,... Well, gosh, then it is even more devastating....
How so? How so? How dare they make presumptions about my love, my grief, the worth of my children?
Losing two children is absolutely worse than losing one. Truly, it is twice as horrific. Even more so, for reasons which are unfathomable unless one is living it. But, I cannot separate Zachary's death from B.W.'s. Zachary died after I'd learned to live, reluctantly, in B.W.'s absence and with my perpetual grief for one dead child.
Would I rather go back to the scenario where B.W. was dead and Zachary was here with us? Absolutely, yes. That would mean I'd have two of my three children here with me, the way it was hoped and expected to be on earth's predefined time-space continuum, the way it actually was when Zachary was with us for those two precious weeks. It is not because I love Zachary more, or because he breathed for two weeks, or because I knew him better or because he was expected to survive. It is not because B.W.'s death impacted me less.
I still love and miss B.W. I am still his mother and he is no less my son.
