A Life Altering Experience

A year ago today, a sweet little baby unexpectedly passed away only 3 weeks after he went home from the NICU. His mom Sarah wrote the following for our NICU parent newsletter and she gave me permission to share this on my blog. I was so moved by this. Please visit her memorial page to Jeremiah if you get a chance.

A Life Altering Experience-11/04/08

One year ago, I was two months into my NICU stay with my son, Jeremiah. I had known since mid-pregnancy that we would end up here, and not quite sure how we’d leave. I have thousands of memories of our time there, and many of Jeremiah’s firsts among them. There are also plenty of things I wish I could remember. You don’t forget the big things, but the small things get left in the cloud; names of special people, dates and times of events. But, there are most definitely the big things that last a lifetime, the more subtle lessons of this experience. I can tell you that once you leave here, you will never forget all the things this place and this experience have taught you. You won’t forget the perplexing choices you have made, finding who your friends are, and seeing the compassion of strangers. You never forget seeing how a child beyond hope can still smile. There are lessons to be learned here that most people will never have the grace to experience. None of us asked to live this, but none of us leave here hollow. As frightening- and often heartbreaking- as the NICU can be; it shows you sides of yourself, your family, and your child that you would never know otherwise. We will truly be humans of a different character.

As a parent; the hardest, most consistent part of the NICU is monotony. You wait. You wait for labs, you wait for tests, you wait for Radiology, you wait for rounds, you wait for decisions, and you wait for surgery. All this, and that’s just the initial period! After that, you wait to come off the vent, off the PICC line, wait to be tube fed, wait to build up feeds and on and on and on. “Hurry up and wait!” seems like the parent’s role in this country. But while you wait, keep in mind what you are watching. We as NICU parents have the opportunity to see the will to survive in action, playing out in the smallest of our children. Survival is the foundation of the human spirit, and these children who endure too much too soon can put us in absolute awe of them.


Remember your first visit here; the first time you saw the blinking lights, the tubes, and heard the vents. You see all these rows and rows of the smallest, sickest people in the world, and you wonder, “How can they survive? How will they ever leave here?” Not long after that first thought comes your first conference with the Care Team. You hear all the diagnosis, the estimates, and the “plan” in a place where the only plan is there is no plan. That first thought comes back again, except this time it’s, “How will we live through this?” But instead of burying our heads in the sand and hoping for the best, we go back where we came from- our child’s bedside, and we wait. After waiting a while we realize, our kids keep fighting. Every day that we make our way back up here to this floor is another day our child has fought to be here. We may have no indication of the future, but they are here today and so are we. Every day we as parents get a little stronger in this new world, and we work to make our children stronger. Is that how the cycle goes? Do we get stronger because they have made us stronger? Or do they get stronger because we do? No matter the path, one day there comes upon us a feeling of clarity. Maybe it happens in a surgery waiting room, maybe it happens when our child wakes up for the first time, maybe it happens when you see the vent numbers go down. At some point you realize that you are a part of a team- that your child is fighting and so are you.

Though we are standing in a place no parent wants to be, and we are navigating our way through an unknown and dangerous territory- let’s not be blinded to the lessons to be learned here. We as parents are forging a bond to these children and beginning our memories just the same, but it is in a whole different way. Our children are special in their beginning here, and we will lead them through this just as they are leading us. In this place we experience compassion and selfishness, hope and despair. In this place, we strike up conversations in elevators with strangers we would normally pass on by. We are initiated into a community of people learning through the smallest of teachers, our children.

Since my time with Jeremiah, my whole purpose in life has changed. I have been opened to a world I never really knew existed. I have found myself not only changing my purpose, but also changing my mindset. I am so much more compassionate, patient, and generous. I’ve seen the human spirit in action, and it is life changing. I wish the best to everyone sitting where I was one year ago. I wish you patience, understanding, support, and faith.

Love and Best Wishes;
Sarah-NICU Mom