Friday, October 31, 2014

Invisible lion cub

Today, I rummaged through my computer files looking for photos from Halloween 2008.  It is one of the two times since Zachary's death that I have been brave enough to look at older photos, knowing they will unleash a deeper level of sorrow and regret at the old us and at all of C.T.'s ages that Zachary will never attain.  With a heavy heart and shaking hands, I located the photos.  C.T.'s precious round face, his drooly innocent smile and blue eyes, seemed to beam right out of his hooded lion costume.  I had assumed Zachary would use that costume this year.  I tearfully considered clipping out C.T. from his own photo and including the lion costume here.  But, of course, that would be wrong.  And, it is simply too sad.  The costume is not Zachary's and it never will be.  It was saved for him, but it never touched his body.  He will never use it. 

Nonetheless, Zachary would have been a lion cub today, for Halloween.  Will anyone but us feel his absence today?  Does the universe care that there should be one more lion cub?  Probably not. 

I think that's one of the more crushing aspects of losing my children when they were babies.  They are everything to me, B and C.T., and yet, they had no (or so very little) time to impact others who (should have? would have?) loved them.  That part of the hurt is so difficult to put to words.  Imagine being the mother of two beloved sons who essentially had no obvious impact on the world,... who had very little identifiable impact even on their own extended family and friends.  My love for them is the same - unconditional and everlasting.  They are always on my mind.  But, the memories "to hold on to", which Hallmark proclaims will counterbalance the devastation, are so few.  The ability of my two sons to bring joy, to change and grow and continue to surprise, is completely non-existent.  The concept of a meaningful life for Zachary and B.W., so cruelly unfulfilled.  In so many ways, and over a period of years, I had accepted that it was this way for B.W.  So, to be facing the same reality for Zachary now, just feels unbearable.  A complete and shocking mockery. 


Note: I am not saying that losing a child later in life is in any way less painful, or that any cropping short of a child's life is more tolerable for a parent.  I am sure there is much about a son or daughter's future to grieve, even for a 90 year-old bereaved mother.  But, this seems to be an extremely burdensome element of my grief, and I am having a particularly hard time coping with it after Zachary's death.  I would do anything to have had just one Halloween, just one holiday, with my Zachary. 

Sunday, October 26, 2014

Brutality of should have

This is not how it was supposed to be. 

Middle of the night wakings should not provoke painful grimacing, weeping, arms still foolishly aching.

Mail regarding my nine month old should not include an invitation to remember him during a memorial luminary service.  Mail for Zachary should not come from a funeral home.  

Photos of Zachary should not have stagnated on January 20, when he was just two weeks old.  I should not have known from experience that I'd want a few photos from his funeral.  We shouldn't need alters, memorials for our infant son. 

Flowers sent by my husband should not signify various death anniversaries, milestones missed, acknowledgement that he continues to hold my hand through our sorrow-filled days.

Zachary's things, so much of it unused by him, should not sit in piles in various locations in the house.  Blankets that held him, that smell like him, should not have to be preserved in plastic freezer bags. 

I should not be filled with anguish at the wholeness and happiness of others, at the bizarreness of the normalcy that exists for everyone around us. 

Zachary..., his remains,... are not supposed to sit in an urn on our bedroom dresser..., beside his brother's remains!

I should not be spending my time at support groups.  I should not have to express my love for my son through my grieving. 


Babies less than half Zachary's size, born with tremendous health and developmental problems, are put on maximum life support, and somehow go on to survive and delight their families.  They are called miracle babies.  None of that language was ever used in description of Zachary, who didn't need - should never have needed - a miracle.   

You're taking this one home.
Let's feed him and get him home.
He's so strong. 
He's amazing. 

From one of the nurses who cared for Zachary only after he became ill:
I heard he was doing so well, was so strong.  I just can't believe it.  It's unbelievable. 


Oh, how I miss that little person.  My Zachary.  How I ache to relive the fourteen days we had together.  How I miss the whole life we should have had with him. 

Monday, October 20, 2014

Nine months dead

We received a brand new, never before seen, medical bill on Friday.  For a single x-ray of Zachary's chest on January 15.  I barely made it to the kitchen island to unload the mail and collapse myself there when I saw the radiologist's return address on the outside of the envelope.  Inside:

Date: 1/15/14
Patient Name: Zachary
Description: Chest Xray
Charges: $156.00
Insurance Pending: $67.00
Patient Balance: $42.92

Payment of account is due within 10 days of receipt of this statement.

Really?!  Nine months.  You took nine months to get this bill to me, and you think it's as simple as writing a check within the next ten days?  

If you could only see what happened to me to see his name in the Patient column.  If you understood that on that Date of Service, my healthy baby was diagnosed with sepsis, something he acquired in the healthcare environment in which your technicians practice.  If you only knew how your invoice brought back the feelings of full expectation I still had for him on that Date of Service, the fear that began to grip me over the course of that day as his condition worsened.  They had to intubate my baby that day!  By the end of that day, there was so much intervention where there had been so little.  Your technicians had to come back several times, that day and until the day he died, to scan his lungs and abdomen.  If you could just understand that it was the (official) beginning of the end for my Zachary.     

I have paid you so much already.  For something like 30 x-rays and scans combined.  I spent months combing through his medical bills, making pained calls to you and others, after which I would sob and scream and sob some more.  It drained me.  But, I paid all of them.  All of them.  After I assumed that all of the bills were paid, all were reconciled with the insurance company, it took me a few more months just to file them away.  To file away the precious evidence that my son was here for two weeks and needed medical care. 

None of your scans or x-rays, none of your measuring or calculating, saved him.  And still, and of course, I paid all of his bills. 

But, you must stop this nonsense now.  Please flag Zachary's patient account file folder, your electronic files, with a big fat DEAD.  He is dead.  He has been dead for nine months today.  I will not be paying any more tardy bills for my dead son. 

Thursday, October 16, 2014

Family photograph

In the fall of 2012, I thought I might finally be ready to attempt a "family" photo.  We would hire a professional photographer to take some posed but mostly documentary style shots.  We would choose a beautifully landscaped location, maybe a forest preserve decked out in autumn's color palate.  Our clothes would be carefully staged to appear casually thrown together, not matching, but not clashing.  One of the scenes might be the three of us holding hands, C.T. between B and me, walking down a winding gravel path, a canopy of colorful leaves above us.  For another, C.T. being pushed on the swings at the park, his head thrown back in laughter.  A couple of the photos would be selected for our Christmas card.  We'd choose our favorite family photo and have it framed for the fireplace mantel.  I identified a photographer that my sister had used, and after she gave him a primer on our family, he seemed open and willing to think about how we might include B.W. - or his memory - in at least a few of the photos.  

The photo shoot never happened that year.  Guilt and regret that we were doing it without B.W., fear that it would just feel too incomplete, paralyzed my attempt to follow through.  We have plenty of photos of the three of us, often with some B.W. memorial element somehow included, purposely or inadvertantly.  But there was always this nagging reluctance to go through the process of declaring a "family" photo shoot, with a professional photographer,... I don't know, I just couldn't do it.   

You see, that has always been the issue.  B.W. was our first child, the one who made us a family in the traditional offspring-required definition.  And, he has always been dead.  We never even got a family photo with his dead body.  A professional family photo after B.W.'s death, with C.T. present in our lives, just never felt quite right.  I've never known how to adequately incorporate our dead son when he is just so absent.  So many of the ideas I've seen or heard from other bereaved parents were just not me, not us.  So, we've never had one taken.  Not one professional photograph of our "family".

In the fall of 2013, I remember revisiting, ever so briefly, the idea of a real family photo.  Pregnant with Zachary, and having already waited so many years for the concept of a family photo to sit somewhat tolerably, even then I rationalized we would put it off one more year.  I wanted to wait until Zachary was here safely and could be part of the photograph.  Four out of five family members in the photo seemed slightly more palatable than three out of four.  In my bereaved-mother mind, I told myself that my family would, in all likelihood, be more complete in 2014.  And, it was.  For two weeks, when Zachary was here, it was. 

At that time, children were not allowed in the NICU.  And so it seemed obvious that a family photo (including C.T.) would have to wait until Zachary came home.  And honestly, because Zachary was almost fully expected to come home whole and healthy, it never crossed my mind to hire a professional photographer to come and take photos at all, even just of Zachary in his infancy.  We were also told not to bother his preemie eyes too much with photos and flashes - that we'd have a lifetime to pester him to giggle and smile for the camera, that I should focus on fattening him up so that he could go home.  

In the midst of the calm, when Zachary was healthy, we don't have a single (of course, incomplete) family photo of me, B, C.T. and Zachary, together.  Then, full expectation was violently downgraded to holding on to hope, and then crushingly surrendered to removing Zachary's life support.  The couple of photos we have of the four of us are from the days when Zachary was very ill, and we were unable to hold him, and then from the day he died in our arms.  I was certain to bring B.W.'s framed hand and foot prints to the hospital on the day Zachary died so that his memory would be part of the few unsatisfying images we do have with our "family". 

I wish I would have asked the professional photographer for a couple of staged photos of us that day, before he actually died.  Because the photographer's approach was documentary style, so as not to interfere in our last hours with Zachary, the only decent staged photo we have with the four of us, plus B.W.'s prints in the background, are from when Zachary was already dead.  Our faces absolutely broken and spent, a dead Zachary in my arms, a memorial to another dead son in the background.  It just doesn't get more fucked up than that. 

I hate it.  I can't put words to how much I hate it.  It burns me to my core to be cheated of the lives of my two children, and to have ONLY brokenness highlighted in our few "family" photos.  Something that is so natural and normal, that is usually pride and joy inducing, for families to have and share with others, is truly a dagger in my broken heart.   

Tuesday, October 7, 2014


The car seats intended for Zachary, lined up in the spare bedroom, sit empty and collect dust, stare out at me every time I pass that room of the house.  The unfinished business of ensuring each make and model still meets safety standards sits idly, pointlessly, on my (pre-tragedy) to-do list.  What will I do with his car seats?  If I move them even one foot from where they exist, my precious baby will go from healthy to intubated, starved, drugged, paralyzed, then on the mend, suddenly with a fatal brain hemorrhage and finally dead, all over again, in my mind.  I feel frozen and bitter about Zachary's unused things.  I don't want to donate them to some other baby.  I refuse to accept that he no longer needs them, that we will never bring him home.   

His email archive is consumed with the sad and the sorry.  The congratulatory and well wishing emails were overtaken by condolences, funeral preparation exchanges, communication with the hospital and doctors, memorials and messages from people who continue to remember Zachary in the months since his death.  I have to scroll down, pages and pages, to January 14, his eighth day of life, to see remnants of a purely positive outlook.  I remember setting up his email archive in the middle of the night, in our hospital room, after he was born.  I announced he had arrived, on caringbridge and through email, and the congratulations poured in.  The cord blood company began bombarding us with messages about payment and the process for retrieval the next day.  To keep it all straight, I had to create a designated space for messages concerning Zachary.  Gratitude and peace filled my usually cautious heart as I typed his name to that folder.  On that night, and as the days unfolded, I believed I would be storing bits of information for and about Zachary, for years to come, in that archive.   


If I focus really intensely, if I wade through and beyond the thousands of jagged pain points of my shattered expectations for him, if I briefly set aside his sudden illness and the horror of his suffering, I can close my eyes and actually see him, feel him, almost perfectly.  Those precious feet, pushing against my hand, strong and full of life.  Fingers closing one by one on mine.  Those raised eyebrows, wrinkled forehead.  Wide, searching, innocent eyes.  Holding him, whispering in his ear, breathing with him.  His tension totally melted away by the recognition of my voice, by the presence and warmth of his mama.  He was so beautiful, my Zachary.  I still don't want to let him go.  I feel heavy, like lead, with missing him.   

Zachary would be nine months old today.  It has been nine months since the most amazing day of my life.  How absolutely wonderful life would be if he were here with us today.  I'm so, so tired of this tortuous reality.  Every day, another without him. 

Sunday, October 5, 2014

He who remains

Friday was his fourth missed school day in the last two weeks due to two prolonged episodes of nasty cold/viral symptoms.  

On Friday afternoon, I call B at work with the good news that C.T. has actually fallen asleep for a nap, something he almost always refuses to do, even when he feels terrible.  B pauses.  There is a barely noticeable catch in his voice: Are you sure?  I need no clarification.  I hear the fear, the obvious translation grips me despite the miles between us.  Gretch, he might just slip away too.  Please check him.  Make sure he's still breathing.  Make sure he is alive. 

I peek into his bedroom several times over the next hour.  I watch his chest rise and fall, reassuring myself and B that he is okay.  After his nap, when it seems C.T. may have turned the corner on this second illness, he suddenly spikes a fever.  He doesn't want to eat or talk or do anything other than cough, whimper and lay still.  My thoughts quickly spiral from concern to excruciating panic and fear.   

A virulent form of strep?  Bacterial meningitis?  What symptoms have I missed?

Oh God.  Are we going to lose him TOO?!    

And in that honest, raw, desperate place, I just know my C.T. - the only one who remains, the one who sustains B and me, just barely, beyond Zachary's death - may die. 

I don't pray for him.  I make the only move that makes any sense to me anymore.  I get myself together, acknowledge that I don't fully trust my judgment.  I calmly ask my neighbors, who are both in the medical field, to come and see C.T.  I ask if they'll listen to his chest and help me determine if I should take him to urgent care since it is now after hours at our pediatrician's office.  And then, after they unknowingly soothe the immediate strangling, frantic fear, after we're gently assured that an ER or urgent care visit on Friday night is unnecessary, we take him to the doctor on Saturday morning.  He has developed bronchitis, which shouldn't be too concerning, and will probably spike a fever on and off, for a couple more days, even with precautionary antibiotics.  I smile and thank everyone along the way for their help, for their kindness, concern and input.  I go and fill the prescription for C.T. and we talk about how he will be feeling better in no time.      

But I know.  I know how badly this could have gone for C.T.  I know how badly it might go next time, or even tonight, with what appears to be a 100% curable diagnosis.  Zachary was almost fully expected to live and thrive.  Then, even after he acquired sepsis, and after he survived the first critical 48 hours, it looked like he was going to recover.  But, he died.   His illness and death left everyone, including all of his doctors, dumbfounded. 


We live in constant fear that C.T. will precede us in death.  I think about it a lot when I'm driving alone and when he's away from me.  I think about all of the ways that C.T. may be taken from us.  And not in the theoretical, I've had a close-call with my child sort of way that so many parents seem to have experience with.  Our fear of his dying, our desire to keep him safe, doesn't simply keep us on our toes, ensuring that we take reasonable measures of precaution.  It doesn't remind us of how fortunate we are.  In the aftermath of Zachary's death on top of B.W.'s death, it is difficult to imagine that C.T. will outlive us.  Our fears about the lives of our children have materialized, in reality.  Twice. Two of our three sons are dead.  It feels like death has set up camp in our family's home and waits to exploit any weakness, any illness, any errors in judgment.   

When you've heard these words spoken about your child, the words with no hope left in them, that describe a prognosis with absolutely no remedy... 

On September 30, 2006
You say you heard his heartbeat just a couple of days ago?
     I'm sorry.  There is no heartbeat.
          Your baby boy has died.  There is nothing we can do. 

Between January 15-17, 2014
Zachary has something called a gram negative bacterial infection. 
     We've started four broad-spectrum antibiotics.  We can no longer feed him. 
          He is now having trouble breathing.  We need to intubate him.
               He needs fluids.  Blood and platelets.  Pressors.  Sedatives. 
                    He is fighting too hard.  I'd like to medically paralyze him so he doesn't desat.
                         He has a 50% chance to come through the sepsis.
Things are looking much better.  He has made it through the worst of it.
His vitals are much improved and his oxygen requirements are decreasing fast.
The last blood count marker we were hoping would improve, has. 
I think we may have turned the corner.  This is very good news!
                         Things are not looking good.  It is bad.  Very, very bad. 
                              Zachary has developed an extremely rare grade four brain hemorrhage.
                                   There is midline shift of the contents of his brain.
                                       Our recommendation is to remove Zachary's life support.
                                            He may die on his own.  I'm so sorry.
                                                 In the meantime, put some thought into a DNR order.

If words like these have been uttered about your child (and for us, about two of our children, in separate instances and due to different circumstances).  When against all expectation, your child has fallen on the wrong side of the statistics.  When the worst you can imagine has actually happened to your child, to your family.  If your child is dead and will never again be present to bring joy or light or hope to your family. Then you know.  Then you understand, with a clarity that may seem crazy and dark and irrational to outsiders, that what appears to be "just a fever" can ultimately mean death.  
I am certain that most people can't fully appreciate that this is our way of thinking, our reality.  I am also quite sure that none of those people have actually lost a son or a daughter.  And definitely haven't lost two children.   


Our sick boy, who is, at the time I'm writing this, asleep on the couch with a (new) spell of nausea along with his bronchitis, woke up early this morning to draw something special for his dad and me.  In his bedroom, before we were even awake, C.T. created these renderings of tattoos he imagines us getting. 

He bounds into our bedroom... Mommy, daddy, you have to choose "yes" or "no".  Do you like the tattoos I designed in memory of Zachary and B.W.?  Do you like the "we love you" with three hearts?  Can tattoos have color?  If you don't want those colors, you can pick something different.  You can get one on your left arm and one on your right.  

They look like some form of dead-brother currency to me, but I'm touched at the precious thought and his early morning artistic effort.  We both check the "yes" box and agree to think about getting the tattoos. 

This boy, our C.T., is so special, so loved (and all we have left on this earth).