Preemie Guilt – Does It Ever Go Away?

The dust has well and truly settled after our stay in the NICU and the hospital stay leading up to it. We have a perfect, healthy and rambunctious little pocket rocket who never lets us dwell too much on the past. Life with her and her brother is just too much fun for us to not be living in the moment at every opportunity. Somehow though, we are forever branded by the experience we had. It seems once you have a preemie you are forever part of an exclusive club. The kind of club you don’t want to be part of, but that can also be very fulfilling.

Frequently, in the Preemie community, I hear a question that I have yet been able to answer with any eloquence. Newly minted preemie mums are often asking mothers like me, those of us that have long since left the NICU behind, a simple question that I know from experience comes from a place of raw vulnerability.

“Do you ever get over the guilt?”

It’s something I have touched on before in other articles and in Diary of a Preemie, but I don’t think I have ever been able to fully explain the process of coming to terms with this new reality. Some people respond with a resounding, Yes! You have nothing to feel guilty about. There was nothing you could do. You need to let it go, because it’s not a healthy emotion.

And they are absolutely right.

And yet.

For me, there is something incomplete in this response. For me, the answer is complex and layered, because as much as the intellectual part of my brain understands the reality, still now I know in my heart of hearts that being a preemie mother will always be a part of me.

So to all the preemie mums out there who are wondering, in this very moment as I try desperately to match the right words to my most complicated feelings, if they will ever lose the guilt – my answer is no. I don’t think so. Not for me.

Not because I feel that I have something to feel guilty about. I know I don’t. It’s something deeper that I can’t control. Something I can’t quite put my finger on.

Maybe, it’s because there were nights three years ago when there was no comfort. When nothing and no one could ease the creeping dread as I lay in a hospital bed waiting. Maybe it’s because there were days when a brave face was just easier than acknowledging the mass of swirling feelings inside that I still now struggle to comprehend. Maybe it’s because we had to soldier on, and couldn’t spend a minute or an hour trying to work out what to do with that guilt. Or, maybe it’s because I don’t know how I could ever process this experience in any meaningful way – which is probably why preemie mother’s tend to feel so much like part of our own community. Maybe, worst of all, it’s because there was a knowledge inside me that love wasn’t enough to protect her or to keep her inside me. The thought of that may very well haunt me forever.

I think, partly, it’s just pure shock. At being told she wasn’t going to make it. At being on the edge of my seat, gripping as hard as I could with white knuckles to save from sliding off into an abyss. At needing some consolation – something to believe, a basket to put all my eggs in.

In reality, I think the answer may be as uncomplicated as this; once your heart breaks in the way that a parent’s heart can break for their child, it can never, ever go back the way it was. And so, my answer is no. The guilt does not go away.

The good news is there is a lot that the preemie experience gives in return. There is an appreciation that wasn’t there before. A knowledge that life is fragile, and precious, and ultimately wonderful. Being the mother of a life-conquering premature miracle and force of nature is an incredibly special job. Sure, it’s a double edged sword – and a very sharp one at that. But in case I am right and the guilt doesn’t go away, remind yourself whenever it rears its ugly head that you know something that lots of other parents don’t. Because with the guilt comes a new sensitivity that may make your life – and your family’s – all the more full.

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