When I think about the darkest moments I’ve experienced, they haven’t necessarily been the traumatic ones. Instead, they have been the ones filled with an anxious uncertainty of what the next day, or even the next hour, might bring and the ones filled with the resulting weariness. When a parent has a baby in the NICU, these moments fill their existence. There is no time to rest because the thoughts of your baby and their well-being flood your thoughts at all hours of the day.
I remember sitting by myself in the pumping room of the NICU where it was just me, the clock, and my thoughts. These moments were some of the most painful for me because it was time for my mind to wander. I would wonder how long we were going to be trapped in the NICU because after a few weeks, being trapped is what it felt like. I would wonder what kind of medications and machines we might need to be sent home with…if we were able to go home. I would grieve for the last trimester of my pregnancy I lost and all of the plans that went with it. I lost the opportunity for a happy baby shower because as long as my babies were in the NICU, I didn’t feel like rejoicing. The lost opportunity for maternity pictures, the lost chance of delivering my babies without being a code announced over the hospital loudspeakers, and the lost chance for my family and friends to rejoice with me were all things that I grieved for. From that point on, I felt I had become everyone’s worst-case scenario and that was a hard reality to cope with.
I would look down at my hands that were raw and worn from the endless hand washing and grimace. My soul was raw and worn too. This for some reason, I felt like I needed to hide. I felt so vulnerable and scared for what our outcome was going to be that I projected a false sense of optimism to family and friends via social media. I was afraid they would feed my fear if I said anything that wasn’t positive. In those pumping room moments, I would muster my strength and give family and friends an update that only included the most positive things that had happened that day and which were devoid of the reality I felt. People always say to NICU parents, “I don’t know how you do it.” I answer with, “What choice do we have?” Anyone who came to visit me on a regular basis could see the worn, anxious reality on my face. I know I could see it every time I looked at my reflection as I washed my hands.
So, to the NICU parent who is feeling overwhelmingly anxious and weary — I can’t promise you a tomorrow free from trauma and pain, but what I can promise you is that there is a community of us here ready to lift you up and support you when the burden feels too heavy. Reach out and ask for help. It’s OK to show you are vulnerable, and it’s OK to show you are scared. People aren’t always going to say the right thing — accept that and try to move past those comments the best you can. Lastly, just keep doing the best you can. Period. It is enough. You are enough.
To others who may be reading this, please don’t minimize the pain of someone going through an NICU stay. Assuring them everything will be OK often has the reverse effect because you, consciously or not, are shutting down their anxiety and pain. Also, perhaps the biggest piece of advice I have is to not underestimate the power of just being there for someone. Be a shoulder to cry on. Show up. You can help them feel a little less alone, and that is more powerful than you know.