Friday, July 25, 2014

C.T.'s firsts

This afternoon, C.T. comes to the back door from outside.  He is brave, but visibly shaking. 

Mommy, I think I just got stung by a hornet. 

A small welt has formed on his forearm.  I ask him how he feels, if he's certain it was some sort of sting.  He says he feels shaky and yes, he is sure.  It was a hornet or a wasp.  He had to climb the next door neighbor's backyard fence because he couldn't figure out how to open their gate (and because he was told to stay in the back where I could see him).  I mix some baking soda and water to help with any swelling or pain and tell him everything is going to be okay, that we'll watch for a reaction.  He calms quickly, feeling safe and cared for.  It is obvious he is proud that he didn't cry or panic, that he got over that fence.  We sit and relax, snuggle on the couch, his arm horizontal, to be certain the applied treatment stays in place.  He keeps asking me if his tongue is swollen or has turned a different color,... rumors he has heard about allergic reactions.   

At age six, it is his first bee sting.    


They call me from the car, on their way home, this evening.  C.T. had reeled in his first fish tonight.  He is so proud, talking over his dad, claiming it was a really difficult tug-of-war with this tiny bass. 


This is just a single day, a couple examples, of C.T.'s recent firsts.  Thousands of firsts, new experiences, challenges faced, over the course of his six and a half years. 

My awe and delight in C.T.'s accomplishments and new experiences is painfully overshadowed by the fact that Zachary had so few, will never have more.  He never had the chance to feel the anticipation of a new adventure, the pride at having worked hard and attained a goal.  Not even the warmth of the sun, directly on his skin.

And B.W. never had any experiences at all.   

As their mother, I have missed out on just about everything with two of my three boys.  Almost all of their firsts and experiences taken away from our family.  How am I supposed to be okay with that?  Why must we experience C.T.'s life in triplicate, always mourning what would have been, and twice over?  Will the unintended pressure to do and be everything (that his brothers could not do or be for themselves) crush our only living child? 

Sunday, July 20, 2014

Glimpse of his last hours

I can't see through my tears.  My face is red and swollen and my head is throbbing. 
Tolerance for anything unrelated to Zachary, even for the other two family members who mourn with me in this household, has been non-existent.  Today we have relived that awful day, in a more complete way than we normally do.  The weight of the day, the horror that it is real, the realization that shock can no longer buffer the full blow, has taken an undeniable toll on all of us today.  It is the six month anniversary of Zachary's death. 


Six months ago, after a third tortuously sleepless night, after telling C.T. that his brother would die the following day, we walked into the hospital to care for our 14 day-old Zachary, one last time.  The walls of his isolette came down.  IVs and (now) unnecessary medical equipment were removed from his body and his room to make space for the couch where we would spend his last living hours, together.  We bathed him, combed his hair, as the heat lamp, our hands and holding, kept him warm.  He was baptized, our prayers now resigned to a peaceful death, an entrusting of our beloved boy, back to God.  We read books to him, sang to him, our tears dripping all over his paralyzed body.  The four of us had lunch together.  The saddest first and last meal as a family.  No longer able have a real feeding, Zachary was given only swabs of breast milk.  The high-frequency oscillating ventilator was switched out to a traditional machine, ending the noise we despised and the pulsating of his suffering body. The paralyzation agent, that felt like it crushed my soul but stabilized Zachary's vitals, was "reversed".  We gently wrapped him in a giraffe blanket, a welcome baby gift from his aunt that would now help us usher him into death.

We did these things with the knowledge that there would never be another opportunity to create memories with Zachary.  In a few short hours, we would have to face our worst fear and watch our son die.  No one could tell us for certain what that would be like for Zachary or for us.  We forced our shock and despair to the perimeter of our consciousness in order to get through that awful day.      

They transferred Zachary to my arms at 12:45 p.m., his ventilator still in place.  The last time I had held him, six days prior, the day he exhibited troubling symptoms, he had just regained his birth weight, was still interacting with me, squeezing my finger, yawning, sneezing, crying, looking at me with those amazing eyes.  Now, he was 30% heavier, severely swollen and edematous after being pumped full of fluids, beat-up from endless pokes and prods, essentially non-responsive due to the long-term paralyzation and an invisibly irreparable brain bleed.  I beamed with pride to hold him again.  He was still so beautiful, so perfect in my arms.  His illness, the effects of the treatment, the nearness of death - none of it could not steal his perfectly smooth skin, his feather soft hair, his sweet baby smell.  Our hands and lips covered him, traced him, memorized him, showered him with love and adoration.  The paralyzation agent wore off enough that he opened his eyes, gave us an intense, but blank, stare, over the course of the next couple of hours.  He moved his tongue like he was rooting, but we were told it was normal, an automatic and somewhat expected phenomenon. 

Tears sprung from my eyes as I told him all the things I had planned for him and for our life together.  I told him that he was a gift beyond any attempt at measurement, that we were heartbroken to have to go on without him.  I assured him that he would be safe, whole, loved and at peace, in heaven, in the arms of Jesus, and that we would be reunited, with him and B.W. someday.  I whispered I love you and I'm so sorry, Zachary, in his ear, a thousand times.  We cuddled and kissed him as we wept and read the simple unconditional love affirmations in I Love You Through and Through, a book C.T. chose to read to his brother. 

We called the neonatologist in at 3:15 p.m., and told him we were ready.  He gently peeled the tape holding the ventilator in place away from Zachary's mouth.  In an instant, the tube was out and our son was dying.  We embraced each other, folded three sets of arms around this most beloved person, kissed him over and over, focused all of our love and warmth towards Zachary.  I have never felt so much terror and love and calm, together, at once. 

Zachary.  It's okay to leave us sweetie.  Mommy loves you so much.  We will never forget you.  I'm so, so sorry baby. 

We held him for the next 110 minutes as his heart slowed and then finally, stopped beating.  Zachary was pronounced dead at 5:05 p.m. 

The four of us spent 10 hours together in his hospital room on the day he died.  C.T., who was still five years old at the time, left the room only once to use the bathroom.  I do not know how we got through that unfathomable day, six months ago.  I suppose we had to, and so we did. 


Six months later, the reality of Zachary's death and absence is still sinking in for me.  I think the roller coaster experience of his life and the trauma of his sepsis-induced brain hemorrhage and ultimately his death - all of which happened in two weeks - has implied that I can only acclimate to his reality in bits.  Even as it sinks in, as I grieve day after day for my son, even with the hope of heaven, I lack perspective and peace.  I continue to be just as dumbfounded by his short life and his death, exasperated by suggestions by popular culture that time will heal.  I cannot make sense of his death.  I miss him terribly.

And then I remember that I am not alone.  That others on this planet are living with the feelings of emptiness, longing, the opposite of peace, in the wake of their child's death...

Someone said to Claire, "I hope you're learning to live at peace with Eric's death."  Peace, shalom, salaam.  Shalom is the fullness of life in all dimensions.  Shalom is dwelling in justice and delight with God, with neighbor, with oneself, in nature.  Death is shalom's mortal enemy.  Death is demonic.  We cannot live at peace with death. 

When the writer of Revelation spoke of the day of shalom, he did not say that on that day we would live at peace with death.  He said that on that day "There will be no more death or mourning or crying or pain, for the old order of things has passed away."

~ Nicolas Wolterstorff, from his book Lament for a Son

Tuesday, July 15, 2014

A fraction of my anger

My anger is ever present.  Dense and thickly layered, like a giant rubber band ball. Slamming it down, bouncing it about, threatens to break everyone and everything in its path.  Dismantling it, shooting each band off on its own, target or no target, dulls (too much) the heft of the whole.  So I hold the ball of anger, disgusted that I need to find a place for it amongst my many other unattractive grief adornments.


Would they have done nothing, if he were rather a grown man, groaning in pain, laying in their hospital bed?  Why did it become acceptable for his heart rate to be significantly out of range?  How could his constant, full day, awake state be blamed on caffeine, that had never before affected him this way? 

Why did the last words of that afternoon, his nurse's words, have to be so condemning of my concerns about my son? 

Gretchen, I can't wave a magic wand and make Zachary feel better. 

Those words made me feel foolish, like I was overreacting, like I was a little nutty, like I needed to go home and please get some rest.  Which I did.  I didn't know what else I could do for Zachary.  I was trying to live by "it's a marathon, not a sprint", trying to live my double life.  I left my tiny baby to fend for himself in his isolette that night, his preemie whimpers only audible with open portholes.  No red flag was placed on him.  No doctor visited him at all, that night. 

How could they, in good conscience, tell me It's good we've caught it early, the next morning, when a test could have, should have, been run the previous day?  The sepsis was already doing its damage.  Antibiotics administered even a couple of hours earlier might have made all the difference for Zachary.  Why did a doctor try to tell me that in all likelihood, the source of the bacterial infection was the birth canal, my body?  Impossible, given the timing of his clinical symptoms.

Delayed reactions.  Twisted explanations.  Scapegoating. 


That hospital.  Someone touched my baby, or his umbilical line, with E.coli on their hands.  We will never know who.  Zachary DIED.  My otherwise healthy baby is dead, as a result. 

I cannot begin to articulate how angry I am. 

Monday, July 7, 2014

Six months old

Those long fingers wrapped tightly around mine, that soft as silk, sometimes spiky hair, those purely innocent eyes looking for me.  God, he was amazing.  I would give up anything and everything to have had six months with him. 

My Zachary.  He would be six months old today.


I cannot believe he was here, and healthy.  So little intervention.  And then he slipped right through our hands.  I can't fathom how bits of microscopic bacteria infiltrated his being, ravaged his body, stealing his lungs, his ability to regulate his blood pressure, to coagulate, to urinate.  I can't understand how he was "through the worst of it", having survived the first 48 hours of septic shock, finally urinating again, respiratory requirements dramatically improved, all of his blood counts back in reasonable ranges..., and yet it destroyed his otherwise perfectly functioning brain.  Incredibly rare, we were told.  I can't believe that B and I were forced to make end-of-life decisions for him, that we all watched him suffer and held him as he died.  I will never understand how and why this happened to Zachary.  I can't quite grasp his gone-ness.  Don't want to accept what it implies for the rest of my own days.


What would we be doing with Zachary, if he were here right now?   

I don't know sweetie.  You'd probably be keeping him occupied on the floor while I make breakfast.  Or maybe I'd have him with me in a sling, carrying him around. 

Would he be able to have tiny pieces of a bagel yet?

He might not be quite ready for solid foods yet, at six months. 

Please don't talk to me anymore.  I'm sad. 

Okay.  I know.  Me too. 

Saturday, July 5, 2014


I don't want a garden stake with his name on it.
I don't want C.T. to attend a five-day grief camp for bereaved children. 
I don't want to be part of this support group or the bereavement conference this week.
I don't want to break down, seethe with pain and anger, when I hear about a new baby, the blessed parents, the everyone is doing fine.
I don't want a blog dedicated to grieving his death.   
I don't want to avoid crowds, places where I'll be bombarded by happiness and blissful innocence.
I don't want to dust around the urn that holds his ashes, on our dresser. 
I don't want memorial giraffes all over my home.
I don't want it to hurt daily, when I run into school parents who never made the effort to acknowledge his life, our loss. 
I don't want to dread the holidays, to explain why it doesn't feel right to celebrate. 
I don't want to hear that it's been years since the NICU has lost a baby as strong as Zachary, that the incidence of infection in their unit is remarkably low. 
I don't want to feel resentful of other peoples' birthdays, as he will never celebrate any of his own.
I don't want it to hurt to hear about the adventures, the joys, the frustrations, the everyday tedium of others.
I don't want to think about starting a foundation, about what good can come, in his memory.
I don't want to be haunted by mistakes in his care, by the infection he acquired under their care, by my own guilt, by the images of his suffering.
I don't want to face the room full of his belongings, things that transferred ownership from C.T. the minute I began curating them in early November. 
I don't want (me or B or C.T.) to be the elephant in the room. 
I don't want everything about him, all of our experiences with him, to be over, sealed in the past, in those two weeks.
I want Zachary. 
Not these sickening consolation prizes.  Not this baggage.