Zachary's funeral (deja vu)

In our funeral clothes, we carried boxes of Zachary's stuff into our church.  Photos, candles and flowers to beautify the one and only event in honor of our son.   

Standing beside the casket where Zachary's body lay, as mourners embraced me, commented on the beauty of my son's dead form and offered their most sincere sympathies, I was not really present.  A shell of me was all that stood there.  A bug eyed shell, still in utter shock and denial, wondering how the hell it was that my body was standing erect at the front of my church, marking the life and death of another of my sons... 

This is what our family does when we have a baby.  There is no baby shower, no welcome baby stork and balloons in our yard.  There is no beginning of a whole lifetime of watching that specific little person grow and mature and delight and drive us bananas.  There are only medical bills, a funeral and utter devastation for us.   

...If C.T. wasn't there watching, if I hadn't worked so hard on my prepared eulogy, if they wouldn't have thought me insane, I might have calmly picked up Zachary's dead body and walked out.  I might have refused to go through with the funeral service.  I had imagined carrying Zachary into the church to be baptized there, to attend Sunday school there. 
 

 

Three hours later, I lifted his cold, stiff body from the casket and wrapped him tightly in a hand-knit blanket.  Our tears splashed and muddied the subtle bit of make-up on his perfect face.  Then, we carried out the same stuff we dragged into the church and it was over.  
 

    
I remember the cruelty of having to stop at home to pump and dispose of the breast milk that had accumulated during our early morning preparations and the funeral.  I remember the day coming to a end, as the funeral luncheon wrapped up.  People were already making small talk, uncomfortable I suppose to linger too long on the topic of Zachary and our shattered lives.  As my empty form received the last traces of sympathy hugs and offers of support, my gut knew with a familiarity that sickens me, that most everyone would essentially go back to their normal lives that very day.  But that our new grief, the full-on impact of Zachary's life, suffering and death, was just beginning. 

When I went to bed that Saturday night, no longer burdened and busied with preparations for the funeral, knowing a bit about what was ahead for us from the experience of B.W.'s death, I hoped I wouldn't wake up on Sunday.       

First anniversary

One year ago today, at 3:15 p.m., I told them it was okay to remove the tube that was breathing for you.  I can't imagine anything in life will ever test my strength and restraint as those last hours did.  All I wanted was to beg and plead for your life, and instead, I was forced to surrender you, my son, to death. 

I am still wandering in the dark, my love.  Baffled and broken by what happened to you and the fact that I am still here, without you.  

Guest post, a letter to Zachary

I met my dear friend Megan over eight years ago at a support group meeting for bereaved parents.  Megan lost her firstborn daughter, Elise, nine months before B.W. died, and so initially, grief brought us together.  I can't even begin to count the ways in which this woman and her family have supported us through Zachary's life, illness, death and after.  Even as our friendship has had to morph to accommodate our new raw grief and all of its unfair and difficult implications.  When Megan pressed me for how she could help us honor Zachary's life this month, I asked her if she would ever want to write something for my blog.  Maybe that sounds like an odd request, but sometimes I grow weary of being the only one writing about him here.  Within days, she had whipped something up.  Below is a letter (the majority of the letter actually) which Megan wrote to Zachary last week.  I love when people write or speak his name, and seeing this addressed to him was particularly special.  Thank you, Megan.      

*****

January 16, 2015

Dear Zachary,

Tonight was the first dinner that your family and our family shared since the night of January 24, 2014, which was the eve of your funeral. That night, we finalized a 4 minute and 39 second video that encapsulated your 14-day life, which was set to a song entitled "Amazing" - as that is exactly how your parents described you. Tonight, we helped your mommy, daddy, and big brother light memorial luminaries, one for each day of your life, and position them along the front path, leading to the front door of the house that you should be calling home. We have to believe that you can see the flickering candle flames from your look-out post up above, but it is difficult for that belief to provide us with enough comfort, considering the circumstances...

...Just as your family began to settle into their new NICU routine, you somehow managed to acquire an infection in the hospital. The day before your infection was confirmed, your mommy knew that something was amiss - you were inconsolable and she felt so helpless when the medical team ignored your symptoms and her motherly instincts. For 48 hours, your parents kept a vigil over you and there were several times, during your critical state, where they feared that they were going to lose another son. When it seemed like your amazing resiliency had pulled you though the near-deadly infection, your worn-down parents regained much-needed hope. Hours later, their weary hearts were ripped from their chests when it was discovered that you had acquired, as a result of the infection, a massive grade 4 brain bleed with a midline shift.

The news caught me completely off guard. I refused to believe what I was hearing. Your incredibly wonderful family did not deserve to lose another son. How would they make it through another tragedy, especially when they fully believed that they would have the chance to bring you home?

That day was the first that I laid eyes on precious little you. I will never forget being taken aback by your perfect features. You had the most adorable hands and feet, fingers and toes, nose, and wild wisps of dark hair. To see you lying in your isolette, in a state of medical paralysis, was gut-wrenching. You were so pure and so innocent and it maddened me to think about how much pain and suffering you had endured and how much your parents helplessly watched unfold in your hospital room. The life that you so deserved to live was about to be stripped from you. Your parents were shells of their former selves, moving about like the walking dead. It was true that their lives had been stripped from them as well. Their eyes were hollowed and it seemed their souls were equally so. Their physical brokenness could be felt on the receiving end of each embrace. The following evening, they were faced with yet another unbearable task - telling C.T. that you (the new baby brother he was so proud to call his own - the living sibling who had finally entered his life) were going to die.

Hours before you passed away, I walked into your hospital room with so much rage churning inside. I remember being caught off guard at the peaceful scene unfolding in that very room. A mother and father doting over their beautiful baby boy. A big brother smothering his little brother with kisses. A family trying to make the most of their son's remaining time on earth. A peaceful send off for a boy who had lived through much more in his 14 days of life than most people will experience in a lifetime. In retrospect, I guess that scene shouldn't have been as surprising to me as it was. The family that I so hoped would one day expand - the one that had so much love to give - was doing just that.

Over this past year, I have been amazed by your mommy's, daddy's, and brother's ability to continue on, two urns now decorating their bedroom dresser. The journey has been far from easy, as they push a double stroller of grief up a proverbial Mount Everest, at times gasping for air along the way. Their comfort zone, which they worked so hard to expand over the years since B.W.'s passing, has now shrunk down to what can be contained within the walls of their own home, understandably so. They feel alone in their house of grief, unable to relate to others. Your mommy is a wreck over the permanent absence of her son. Your daddy muddles his way through the work day, before returning to his house of grief. Your big brother, who was proud to share the news of your arrival with his classmates, understands that not many of his buddies are willing to discuss you now that you are dead.

Zachary, your family has worked hard over the past several weeks to honor your memory in so many beautiful ways, but, as your mommy said tonight, "It will never be enough." The only thing that would be fulfilling to them would be to have you back in their arms. To smell your beautiful baby scent. To feel your beautifully soft skin. To run their fingers over your silky hair. To feel your warm breath on their necks, as they comfort you just so. To beam with pride, as you take your first steps. To send you off to kindergarten, garden-picked flowers in hand. To see you walk across the stage on your graduation day. To watch you find your way in the world, as your story continues to unfold. To feel the unconditional love, that they shower you with daily, reciprocated back.

Zachary, on this day and every day, you are so very missed. I am so very sorry that your life was cut tragically short. I believe that you were destined for much more.

Love, Megan

 

Duped,... the day hope was extinguished

On Thursday night, the 16th of January, last year, after 36 hours of touch-and-go, after holding constant vigil by his bedside, helpless to do anything but stroke him, talk to him, pump milk for him and pray, Zachary finally began to stabilize.  The expertise of his doctors and nurses, the fluids, the ventilator, antibiotics, pressers, sedatives, blood transfusions and medical paralyzation - all of these interventions I never imagined he would need - had finally steadied his breathing, his blood pressure and saturation levels. 

As we spent the next 12 hours with the night shift neonatologist, the mood in Zachary's hospital room tangibly shifted.  There was a calm.  Instead of the serious tone and sterile phrases used to provide helpless parents with just enough information, suddenly there was talk, once again, about Zachary's future.  There was the actual verbalization that he had probably come through the worst of it.  The doctor described the potential implications and complications of the interventions used to treat the sepsis.  And because the mood was significantly lighter, he commented on how cute Zachary was, even in his sick and swollen state.  We actually laughed together. Conversation somehow drifted to food and cooking and I remember in the midst of the conversation feeling so relieved to be making some small talk, not gripped with fear that the next minute would literally bring death for my child.     

With the rising of the sun on Friday, the 17th, although we never said it aloud to anyone other than each other and to one of the family members we spoke to, we believed Zachary's life had been spared...

Friday morning felt like the glorious culmination of vigilant prayer and hands-on medical persistence.  Zachary had been completely stable overnight.  The arterial line was in.  His blood counts and blood pressure were steadily improving as were his oxygen requirements.  He was urinating again.  Noticing for the first time in a couple of days that we were hungry, Brandon and I stepped away from Zachary's bedside to have a quick breakfast in the hospital cafeteria.  Within a minute of sitting down, one of the neonatologists came running to our table.  For a moment, I was frozen with panic, assuming he was going to say Zachary had taken a turn for the worse.  And then he explained, breathless,...

I don't usually follow parents down to the cafeteria, but I just HAD to tell you.  The last (blood) count I was concerned about for Zachary came back from the draw we did this morning, and it has improved!  And, way beyond where I expected it to be!  We are doing a jig up there!  Seriously, the nurses are dancing.  This is great news for Zachary!

My hands covered my face, two+ days thick with tears and anguish, and I just knew he was going to be okay.  I hugged the doctor and kissed B.  When we returned to the NICU, I ran into the lactation specialist who also hugged me and breathed a sigh of relief having heard the news of Zachary's stabilization and glimpses of a real recovery.  She congratulated me on having continued to pump every few hours throughout his ordeal, amazed that the stress and lack of food and sleep had not stunted my milk production.  She squeezed me again - Zachary was going to need that milk. 

For the rest of the morning and through the afternoon, things continued to improve for Zachary as bits of good news calmed our weary minds and bodies.  Prayers of thanksgiving launched like fireworks from our hearts.  A sense of peace started to settle back into our souls. 

*****

When I think about January 17th now, I can't help but see a grim reaper figure in the background, cackling softly behind the curtains in Room 202, as we humbly and hesitantly celebrated the fact that our beloved son had survived. 

The same neonatologist who wasn't concerned about anything pathological on that Tuesday, came into Zachary's room early on Friday evening and sat down.  B noticed the worry and defeat on his face.  He said something like Doc, you don't usually sit down.  I'm not sensing you have good news for us.  What's up?  I had been there plenty of times with a sitting doctor coupled with good news, and I remember thinking stop jumping to conclusions, B.  That was the very last moment of my former self. 

Now, I can see the grim reaper raising his cloaked arms and head, laughing loudly, exposing his sinister face, as my hands cover my mouth, holding in the screams and the bile that instantly erupted in me with the words of Zachary's doctor.   

No.  No.  No.  No.  Please, no.  He has come through so much.  No.  This can't be. 

The air got thick and my world went dark.  Hope was extinguished, leaving only smoke and ashes,... futile, delusional pleadings for a miracle, preparations for the death of another son.   

One year ago, today. 

 

Day of deepest regret

On this day last year, Zachary and I were stranded on an island in the middle of his hospital room.  He was clearly, and suddenly, in need of help.  I jumped up and down, waved and screamed at passing ships to rescue us, but none of them altered their course.  Megaphones told us to wait it out on the island, blithely assured us we were both strong and could handle our situation.  I tried and tried, all day, to illuminate our dire circumstances for the capable vessels that passed by.  At the end of the day, after I was convinced that not one ship would help us, somehow I surrendered the idea of getting us help at all.  Exhausted, I found my way home, leaving my tiny boy all alone on the island. 

The regret and guilt about my own failure that day lives in me - deep, aching and unrelenting.  It marinades with my anger at the professionals who didn't listen, who got lazy and delayed the early diagnosis and intervention that might have saved Zachary.  It comes out in sobs and in slobbering wailing when I'm alone.  It plays over and over again in my head.  Every single day.            

*****

My dearest Zachary,

I heard you and I watched you and I held you that Tuesday.  
I charted your troubling vitals in the spreadsheet of my brain.  
I knew something was very wrong.  I knew. 

You were awake all day, eyes far-off and passionless.
You moaned constantly like you were in pain. 
Your heart rate was in the 180-200 bpm range throughout the day.    

You did such a good job of showing us you were hurting, Zachary.  You were so smart and so brave.  Fighting the infection all by yourself.  Fighting for your life while everyone scoffed that you were just wired and hungry, that your mommy just needed to worry less and get some rest.  My brave eight day-old boy.  

I'm so sorry, Zachary, so very, very sorry that I left you that night.  I'm sorry I let them tell me I didn't know.  I'm sorry I trusted their prestigious credentials, their knowledge and experience, over my motherly instincts.  I'm sorry I let strangers, doctors and nurses and a hospital psychologist, well-meaning family and friends, my own exhaustion, sway me to care for myself, to go home each night, leaving you completely in their care.  I'm sorry I worried about C.T., worried about schedules and sitters getting home, worried about readying the house, your nursery, for your arrival, when I should have been solely focused on you.  I'm sorry I relented when the doctor said he didn't believe it was anything pathological that day.  I'm sorry I trusted that he would advise the attending doctor on the next shift to keep a close eye on you.  I'm so sorry I let that same mean-spirited nurse make me feel insane and helpless, like a spoiled child put in her place, when she finally said, exasperated, Gretchen, I can't just wave a magic wand and make Zachary feel better, late that afternoon. 

I'm sorry I let myself be convinced that they knew more about you than I did.  I'm sorry that I left you there, rationalizing it hurt too much to watch you suffer any longer, while no one but me seemed concerned or moved a finger to do anything about it.  I'm sorry I played a board game with your daddy and C.T. that night, even as I was still sickened with worry.   

I should have stayed, Zachary.  I should have trusted my instincts.  I should have stayed by your side all night.  I should have been a stronger voice for you, should have demanded a doctor do some deeper investigating, even if I'd grown tired of their response and their implying that I was over-reacting.  I'm so sorry, baby, that I didn't fight even harder, didn't force them to see.  I tried and tried and then when it really counted, I left and let you down.  I am certain I will never forgive myself for it.  I believe I will live the remainder of my life atoning for my failure to make a difference for you that day.  There is not a regret in my life that comes close to this one, my son.  

I love you so much.  I am so sorry.       

Mommy

 

Intermingling of memories and memorial

One year ago today, on Zachary's fourth day of life, I met her early in the morning after dropping C.T. off at a neighbor's house before school.  She was just starting the morning "cares" session with him when I walked into his hospital room, anxious to see him and spend the day being his mommy.  I rushed to stash the breast milk I'd pumped overnight into Zachary's refrigerator, washed my hands again, so that I could participate by changing his diaper, taking his temperature, and cleaning his face.  I couldn't wait to hold him after we were done with the checkpoints and grooming. 
 
Nurse Erin had built my confidence over the previous two days when she was Zachary's nurse.  I learned how to interpret his vitals, how to operate the many mechanisms of the isolette, when to ask for help vs. when I could handle something for him on my own.  She explained the rhythms of the NICU - the feeding and bathing schedule, the timing of the "cares" sessions every six hours - and how to make sure I was involved and aware of everything I wanted to be aware of, as a parent.  I still had much to learn, and still struggled with worry about stepping on the toes of Zachary's caretakers, but I felt relatively comfortable with the once-foreign concept of caring for my son amidst medical professionals and the high tech equipment of the hospital setting. 

Erin was patient with me.  She answered my questions and repeated her answers when the overload of information was too much for me to process the first time.  She was gentle and even loving with Zachary when she touched and talked to him.  She insisted on keeping him warm and comfortable at all times.  Together, we learned what kept him calmed and soothed.  She kept me calmed and soothed as I struggled those first couple of days to produce some colostrum and eventually milk for Zachary. My heart sunk when she said she wouldn't be back for several days..., but I was thankful to know she had signed up to be with him/us again the next time she was working. 
 
With this new nurse on Friday, I suddenly felt incompetent.  She didn't offer for me to get involved in as much of Zachary's care when she was in the room.  I had to ask.  And then, when I asked, I could tell that she was a bit put out or somehow uncomfortable with my eagerness to care for my son.  She made a comment, with maybe a hint of finger wagging, that she saw in the notes I had been very involved in Zachary's care.  I thought: Yes, I am his mother, after all!  And, I will have to fully take over for you people in just a matter of weeks when he comes home.  She mentioned I should know that some of the nurses were not as open to this level of parent involvement.  I think the words she used was something like "some of them can be persnickety...".  I was left to wonder what exactly she meant and whether she included herself.  Based on our uncomfortable interaction throughout the day, I suspected yes.   

She was so casual, even flip, about any concerns I had about Zachary that day.  I am certain that on one specific occasion I saw her go into his isolette to touch him without washing or sanitizing her hands.  I froze.  I didn't say anything.  It seemed she already disliked me and I worried about the impact on Zachary's care if she liked me even less. 

I cried and cried at home that night.  Was I too involved, pushing too hard to mother Zachary?  Really, what had I done to step on her toes,... or did she really treat all patient families this way?  Why had nurse Erin been so supportive of my mothering and participation if this wasn't appropriate?  Zachary was doing so well - why shouldn't I be involved and bond with my son?  Why didn't I have the guts to confront this woman about being sure to wash her hands?  I had to let it all go.  I had to go back and do it all again with another new nurse on Saturday morning. 

*****

Zachary also had an echocardiogram on this day last year.  I was warned that it would be taxing for him, that it could take over an hour and would probably zap him of energy for the day.  They were right about it taking over an hour, but Zachary slept through the entire procedure holding my finger, my hand on his head, vitals completely calm, as they lathered and probed him.  

It felt like I was going to get to keep him forever. 

When will it not feel like acid burning me from the inside to replay the beautiful memories, to remember the full expectation for his life?

***** 

We wanted to do a direct act of kindness in memory of Zachary sometime between his first birthday and the first anniversary of his death.  Through a friend of my sister, we learned of a woman whose husband died last spring, leaving her to raise their four young children alone.  We also learned that his life insurance had been cancelled just before his death.  I spent a lot of time thinking about how overwhelmed she must feel with her grief and her sudden single-parent reality.  I hope it wasn't presumptuous, but we put together a basket of stuff that might provide a sliver of very temporary, almost insignificant comfort, in memory of a stranger's baby boy.  (Thanks to my dear friend Megan for designing the memorial card that accompanied the basket.)

Zachary's first birthday

One year ago today, at 4:22 p.m. CT, the most beautiful and feisty baby boy made his dramatic entrance into our world.  I was smitten well before Zachary arrived, but birthing him, seeing and hearing and holding him for the first time, was truly the most amazing experience of my lifetime.  I have fallen into despair several times today, because after all, my beloved son is dead on his first birthday.  But throughout the day, even as the reality of his ultimate fate gnawed at me, I tried to consciously hover on the glorious day of his birth.  I tried to focus on the beauty and pure joy of my son Zachary, who would be one year old today.  He was so truly amazing.  On the day of his birth, I could hardly believe I was to have the privilege of being his mother.             

The weather here today was just as cold and brutal (although with not as much snow) as it was last year when Zachary was born.  School was cancelled today and so, C.T. was home with me.  We made a special box where the three of us will stash memories and love notes to Zachary over the course of the next fourteen days.  Each of the days of his life had special meaning and new experiences for us, and I want to get them down on paper.  C.T. wrote his note for today, unprovoked, between dinner and cake.  It simply said: January 7, 2015, Zachary I would have done anything for you. 

 

We spent the evening of Zachary's birthday at Feed My Starving Children, an organization that has worked with big name food manufacturers to develop nutritional and easy-to-pack meals for malnourished and at-risk communities all over the world.  Our shift was able to pack 32 boxes of food tonight, the equivalent of 26,784 meals (likely to go somewhere like Haiti, though I should find out by email when they know for certain).  I didn't know it when I signed us up for the shift, but our shift packed a formula specifically for children six months to one year and for children who have difficulty swallowing.  It is still hard for me to believe and accept that these kids are surviving while my Zachary, with access to the highest level of medical care, nutrition and protection from disease, who had such a strong prognosis and outstanding odds to thrive, did not.  Alas, it did feel positive to do something tangibly helpful to the world, specifically in Zachary's memory.  The family in the photo with us is my sister, her husband and my nieces. 

 

 

Every day of Zachary's life, we will be lighting an additional luminary outside of our house (in the evenings), until there are fourteen blazing, on the anniversary of the day he died.  Tonight, we lit a single luminary for him outside, on our front step.  It is something so small, probably unnoticeable to drivers-by.  But, we seem to need this.  We need to be able to randomly eek out a bit of this love for Zachary, which now has no physical landing place because he died. 

 

 

So many people spoke or wrote Zachary's name today, so many wanted to support us and do something to honor him.  It continues to mean so much to us.  The next thirteen days are the anniversaries of many highs and many, many extreme lows in Zachary's life.  I will try to share some of them here, as I have the strength.        

 

 



One year approaching

I receive several painful emails from baby marketers every week.  No matter the number of times I've unsubscribed, there is always another one - giving tips for the perfect nursery, the softest clothing for baby, pampering for the new mom.  If it's not the email marketers, it's the deluge of miracle baby and parenting stories that perpetually pop up on every search engine that exists.  I can only imagine the torment I'd endure if I had a facebook account.  I usually laugh out loud, try to diffuse whatever minor impersonal blow strikes, but I often end up in tears at the effortless realities depicted..., at the easy joys and concerns that will never again be mine after Zachary's death. Today's stab came by email:

Happy Birthday January babies!  Treat your January babe with a legacy birthstone necklace...

Perfect.  Do you size them to adorn the urns of dead children?  Great, I'll need two.   

*****

We have been trying to prepare ourselves for the onslaught of Zachary's first birthday (on January 7) and the first anniversary of all the beautiful, and then horrendous, moments of his life in January.  There is a burning desire to honor him during this time, to acknowledge the fourteen days of his life more intentionally than we otherwise feel permitted to do.  We keep fantasizing that maybe if we have a plan, if we create an illusion of control over the things we do in his memory, maybe the crumble-and-fall-apart effect will be dulled by at least a fraction.      

Yesterday over lunch, my sister and I mulled over the list of ideas and plans that B, C.T. and I have mapped out to do in Zachary's memory.  I'm feeling okay about the specific things we have planned, but honestly, it is so damned hard, so unsatisfying.  The person of honor is my dead son.  There is no party.  There are no happy guests taking time out of their day to lavish my boy with love and birthday presents, no messy first bites of cake.  This is nothing like what I imagined when I thought about planning Zachary's first birthday.  And he is not the first dead son for whom we must remember his birthday..., rather than celebrate it with him.  It is so overwhelming that this new level of brokenness is really my life. 

January is going to be brutal.  I miss him so much.