Wednesday, January 8, 2014

Guilt, Part II -- Survivor guilt

“How old is he?”

Oh, the dreaded question. I was at a church potluck. We hadn’t been at church much over the winter months, so I didn’t really know many of the new members. Now it was early summer, risk of RSV and colds were diminished, and we were finally taking our baby out in public.

And I was sensitive.  He was 9 months old, but he looked like a newborn. He was still wearing 0-3 month clothing.

“He’s nine months, but he was born four months early.” My quick standard line.

The middle age gentleman that asked the question became very still.

“Oh.” He said, “What’s that for gestational age? Like, 25 weeks?”

Oh-oh. He knew something. Middle aged men don’t typically do gestational age math that fast.

“23 weeks,” I said.

“Oh, wow,” he said, “How did they do that? I mean, how was that possible?”

I said something light-hearted about how it was pretty amazing, and then hinted at the difficulties by saying something like “it was a pretty near thing,”

And then he shared. His son – born at 29 weeks – a full month and a half further into the pregnancy than my son – had only lasted until his second night. Then his heart and lungs gave out.

This was over 30 years ago, but as he spoke, he was transported to that NICU of that past, to the bedside of that baby, to his boy Samuel, and to the few moments they’d had together.

“They didn’t tell us that anything like that could happen. It was so sudden,” he said, “I thought he would be okay. I’d gone back to work that day. When I left him in the NICU, it looked like he was fine.”

Sam had lived less than two days, over three decades ago. But he wasn’t just this man’s son-that-had-died. As he spoke of Sammy, Sam’s name was used over and over again. His baby boy Sammy, forever a baby, but never forgotten.

I cried with him. Me and this stranger. We cried over Samuel. We cried over the tragedy that babies die. And when he asked again how it was possible that my son survived, I still didn’t have an answer.

“By God’s grace and a great medical team,” I said, feeling very insufficient. The truth is, JAM hit some of the worst preemie ailments at a very low birth weight, and he was born the wrong gender (preemie girls fare better than boys) and yet he’d squeaked through. He shouldn't have made it, and yet he did. I had no answer.

I don’t know! - my heart screamed – I don’t know why my son lived and your son died.

In the book of Job all these wise friends try so hard to explain all that had come of Job’s life. And their wisdom was nothing. It was them, trying to explain an unexplainable God. In the end, God has choice words for these friends (Job 42:7). Sometimes there are no answers.

So this middle aged father and I cried for his son, raw emotions of a pain that will never fully heal. Jonathan looked up at us from his car seat carrier. I didn’t get it.

NICU survivor guilt.

There are other types of survivor guilt, too. There’s comparison guilt.

Comparison guilt (my term) is when I feel guilty that my child is doing better than someone else’s child. Since you don’t get much earlier than 23 weeks, most of these other children were born later and had more time in the womb. So they should be doing better.

And then there’s the flip-side of the comparison guilt coin: comparing my child to the micro-preemies who ARE doing better. These are the babies born around my son’s birth weight and gestational age who fared so very well. These are micro-preemies who left the NICU prior to the babies’ due dates. At a year and a half or two years old, they are basically entirely caught up. They’ve graduated from early intervention services. They have perhaps some signs of prematurity (like a head shaped like a toaster – yes, that’s a thing) but they’re the sorts of signs most people won’t notice much. It's so easy to see that and have a pang of regret when I know I should rejoice with them. Most of the time I DON'T mind that they're doing so much better. Most of the time I rejoice with them. But then there are moments when they get unexpectedly quiet or awkward, as they realize I still have to battle to get where they are. I don't want them to feel guilty, I don't want to feel pained. I want their support and friendship, because they do understand so much of what I have been through.

So how do you fight these guilts?

First, recognize that every premature baby is different. If I sat down and went point-by-point over what my premature baby was doing compared to someone else’s, and at what ages, we both would leave feeling kind of down. And what would it help? Feeling guilty about how well my child was or was not doing compared to other preemies was not going to equalize things. You can’t make a preemie get better by pointing to another preemie who did better. So don’t compare.

Second, recognize all that you share in common with those around you. Share. When I say don’t compare, I don’t mean don’t talk about how things are going. DO find good friends with similar experiences. DO share. But shift the focus. Instead of focusing on keeping score or tallying up a report card on your kid (I love lists, so it is WAY too easy for me to make mental lists on my kids), instead of this sort of comparison, focus on hearing each other’s story. Talk honestly about how things are going. In other words, do empathize.

Cindy, one of my NICU friends, taught me this. She shines better in this than I ever could. She naturally empathizes with others’ situations. She did this even when she was worn by months and months living at her daughter’s bedside. I admired her strength.

Some days her child was more stable than mine, other days less. It was clear from a few months in that our preemies would be walking very different paths. My son was on a volatile up-and-down path that wove this way and that with rapidly shrinking and growing shoulders; her daughter was walking on a narrow, slow going, and steep climb. Her situation was no less scary than Jonathan’s, it was just different. And yet on her daughter’s bad days, Cindy rejoiced with me that my son’s days were good. On her daughter’s good days, she mourned with me that my son’s were bad. In this way she taught me empathy and true friendship.

I’ve found another hidden gem in all this. I’ve found that when I listen to other people, JAM’s past helps me listen well. I know how to hear their pain and what sorts of questions to ask because I can empathize, because I’ve been somewhere similar, even if their stories are vastly better or worse than ours.

The shoulders I leaned hardest on when JAM was in the NICU were the shoulders of parents who have experienced similar things. Sometimes their preemies weren’t always “micro-preemies” like mine. In one instance the son wasn’t a preemie at all, but a grade school boy with cancer. Yet both boys were admitted to the hospital on the same day, and both of us mothers learned to navigate that building like it was the back of our hands. One day part way through our saga we met at her house, grabbed a bottle of wine and five of her closest friends and just shared, and laughed, and absorbed it all.  It was just the sort of therapy we both needed.

“You’ve been through the valley of the shadow of death with your son,” one micro-preemie parent said, “You understand us better than most people do." I wasn't sure I did. They had dealt with bereavement, a place I hadn't been. But I guess I'd done the right sort of relating, the right sort of listening, so I had begun to understand. I hadn't been where they were, but in some senses, I'd been terribly close.

To summarize: don’t compare, just relate. Throw off the shackles of guilt, and instead use the good and bad of life experiences to better empathize with those around you. Mourn with those who mourn, rejoice with those who rejoice.

I can do this.


  1. It's like you wrote this specifically for me! Thank you for putting words to my feelings. I'm glad to have met you! :)

  2. Such an amazing post. I really really relate to this in so many ways, but your last paragraph struck me hard. It is what i strive to do, but those words are just perfect. I will be reading them and re-reading them frequently.

    1. Thanks, Alyssa and Andrea! On my best days, this is easy to do and comes naturally. On my worst days, guilt still creeps in...

  3. I've been reading your blog for a while now and have been meaning to comment but things just keep getting in the way. I just wanted to tell you how grateful I am for people like you who have the gift of putting their feelings into words. I was NOT blessed with that gift and it has made grieving very hard for me. Reading the words of parents who have been through similar situations is what gets me through the days of having a micro preemie son and missing my 2 daughters that didn't make it. During our first week, my son had surgery for a PDA, a surgery for NEC, and one of our daughters passed away. All that while I was stuck in the ICU for 7 days after delivery. So many of the things you mention in this post are things that I experienced or struggled with. It's so reassuring to know that others know how hard this is. My son is almost 2 and most days are still hard!

    1. Oh, Dusti - my heart goes out to you. I grieve with you.

      I may be good at putting my feelings in to words usually, but after reading your comment they're stuck somewhere between my heart and my throat. I am so sorry for your loss. Grateful for your surviving son, but so sorry you had to say goodbye and fight for life and grieve death at the same time. The NICU path is hard enough without bereavement (x2).Two years is not a long time, not when it still seems like yesterday, not when your memories of your daughter are still stuck there. I wish there were some easy way to make it all better, but there's not.

      I really don't have words, but -- yes, my heart is with you.

  4. Thank you. Thank you. Thank you! I'm also the mom of a 23-weeker and can most certainly relate to what you have written. I feel like you just lifted a weight from my chest. I need to print and post that last paragraph everywhere until I can recite it in my head.

    1. Amy -- I am so glad this helped! Thanks for reminding me, too, that I am not alone in this!!!


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