Tuesday, August 31, 2010

A side of hope

I'm at work. Things are going along just fine. Kids getting better. I like my job. Colleagues are funny. Gotta hurry. Start time. Lunch time. Home time.

But then...

I see them. I can pick them out in a crowd. My senses are so tuned to them that even in the crowded elevator, or in line at Starbucks, I know they are there.

Those NICU parents.

Working with their babies for years has schooled me in exactly what they look like.

They are a younger than middle-aged couple. Both look tired, but walk with purpose. Mom has a pouchy, post-pregnancy belly, and is wearing a flowing maternity top, as she still can't fit into her old clothes. She wears little makeup, and her hair is brushed, but not styled. Dad stands especially close to mom, often carrying whatever bag needs carrying. He is alert for her every movement, ready to steady her if she stumbles. They are wearing the hospital issued badges that identify themselves as parents, but their child is absent from the space that surrounds their feet. They walk, unencumbered by stuffed toys or mini backpacks, yet they are so obviously parents it might as well be tattooed on their foreheads.

And despite, knowing how sick some of their children are, how no parent would ever wish their child's first few days, weeks or months to be spent in the NICU...

I am jealous of them. Massively, green-eyed, forked tailed, envious.

They still have hope. Their child is still breathing (even if it's done at the behest of the respiratory therapist who sets the ventilator rate that keeps their child's chest moving up and down, forcing air mixed with pure oxygen in and out). Their child might pull through. Might be okay. Might.

And mine will not.

I look at these parents and think "You are the reason that I cannot go back to my old job. You have forced me out. You with your hope...and me without".

I also wonder as I look at these parents, "Which of you will join me here in the land without hope? Which of you will fail to dodge that bullet? Do you realize you are tottering on the brink? How life will not revolve around this NICU forever? How things will move forward, one way or another?"

I stare at these parents. Quickly glance away. Look back.

Why them? Why them and not us?

I do not wish Aidan into the place of their children. Well, maybe into the place of those whose NICU stay will one day be a distant memory, whose lives will continue on happy and healthy, belying how close death sat by their bed. Into the place of the babies whose NICU stay constitutes an upwards trajectory. Sick, better, even better, healthier, heavier...home.

I do not wish Aidan those sad, dulled, old soul eyes of the sickest babies. Whose bodies are failing. Who are in pain. Who if they could talk would say "no more, please just let me go". I would never wish that for him. I am glad he never knew the pierce of the needle. Or the ache of the fever. Or the tube in his airway, gagging him, choking him.

Or, at least I'm glad he did not feel those things if the result would have been the same.

But I do envy the hope the NICU parents have.

I want Aidan back, with a side of hope.

What do you think?


  1. oh, emily, this brought tears to my eyes and a chill to my spine in the same moment. i have often wondered what it would have been like if kenny had been born alive... whether the NICU would have been our salvation, or just prolonged the pain.

    i am feeling rather hopeless these days.

  2. Such a heartbreaking post. Brought tears to my eyes too. I often wonder the same thing. Like you I would have never wanted to see Oliver in that state, if it had meant the same ending, but if there was some hope of course I would have rather taken that path. Even those extra hours, days, months would have been better then just finding out he was dead. It is hard to hold on to hope and there are so many days where it is absent. I feel the jealousy too.

  3. Sometimes that's a false look of hope. I wore that look for 7 days even though I knew that my Aidan wasn't going to make. I had to put on that face for him and be brave for him. I still feel jealousy when I walk to the NICU to visit his nurses for the families who are laughing because their baby is growing strong.

  4. You are amazing... I love reading your blogs. They are so true to how I feel and have helped me progress with grieving the loss of my Wyatt.
    Thank you so much for yet another wonderful post.
    <3 Megan

  5. The NICU was weird for me. After that initial surge of concern when your baby with severe heart defects is born at 35 weeks... he was stable. He was doing really well. Caleb was in a mostly unfilled niche in our NICU between the tiny critical babies, and the bigger, long-timers with chronic issues. So the NICU was the easy, happy time for us. I remember feeling concerned for the haggard, worried NICU parents around me.

    In some ways I felt jealous -- I knew that the premies were likely to have some lifelong complications, but in another sense, the ones that were gonna make were going to get past the NICU, and go on the be healthy, and my son would always have his very broken little heart.