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. 


  1. I'm so sorry Gretchen. I read this before I started work this morning and it has stayed with me all day.

    Whilst I spent those months in the NICU, I saw some babies like your Zachary. Those babies that seemed like a sure thing, who didn't need a miracle. Such a horrible, jarring shock. When those babies who are strong and healthy one minute, are the ones who are so very ill and dying the next. Still takes my breath away. It is indeed unbelievable.

    It is brutal. The loss of the whole lives with them that we should had had. I'm so deeply sorry. Thinking of B.W. and Zachary, how I wish it were how it was supposed to be xo

    1. Thank you, Catherine. During the 2 days when very little intervention turned into almost every intervention, for Zachary, it was so hard to let go of the certainty about his life. During his crisis, I remember my painful reasoning, my grips on him slipping by the minute..., What's happening? Oh God, no. Ok, do what you have to. Go ahead and intubate him, flood him with fluids and drugs, paralyze him, but please just let him live. I knew he would need a miracle then. There was this very small flicker of hope, just an ounce of dumb expectancy, through that time, that another of my children would not be taken. And, then when he was, it absolutely was the most jarring blow I can imagine. There is nothing more of me to snuff out.

      Thank you for reading and relating...

  2. I have no words to bring you relief from this pain. But please know i think of you tonight and often. And i think of beautiful Zachary who should be with you. xo