Control is one of the things you are forced to relinquish when your baby is sick. In the NICU, you relinquish almost everything. One thing you aren’t forced to relinquish, however, is your voice. You are told to speak up for and speak to your baby as much as possible. So how can you do that?
More and more research is proving that reading to your children prior to kindergarten strengthens parent-child relationships and teaches valuable learning skills that can’t otherwise be learned. (AAP, 2015). Quite literally, your voice is what your baby needs to get well. Being in the NICU with our preemie son, I never found a book he might relate to. So, I wrote one.
When my wife found out she was pregnant, one of the things she really wanted to do was build a book library for our son. Being a teacher, she understands that one of the greatest gifts we can give our children is their education. We have so many books now that it’s actually becoming more difficult to find books that we don’t have. What we didn’t have, though, is a book that our son could listen to, look at, and say, “Hey, that character’s like me!” And why is that? I knew I needed to change this.
When a child reads or listens to a book, they are seeking familiarity. They are only able to comprehend so much of what the story is attempting to convey, but they seek familiarity in what they see. No two children will necessarily interpret one book the same. One of the fundamental difficulties we face as authors is how we can convey a story that’s relatable, using characters that aren’t often seen.
Petey the Preemie Panda is a book about a premature panda cub, who is facing the reality and understanding that he’s different than friends his own age. Petey has a tracheostomy, or “trach”, that helps him breath and has glasses due to having Retinopathy of Prematurity as a cub. Retinopathy of Prematurity is an abnormal development of blood vessels in the eye that can cause scarring and potential blindness, or partial blindness.
Petey comes to the realization of his difference one day when he’s with his parents and his friends ask him if he wants to partake in an activity that would be too dangerous for a cub with a trach. He asks his parents if he can participate, but they say no. This exemplifies the juxtaposition of a fearless child and their fearful parents.
A realization that NICU parents come to is that there is no comparing your child to other children. If you take two children that were born at the exact same gestation, at the exact same time, in the exact same hospital, you will have two very different paths in the NICU. Some of the NICU commonalities will be there, but eventually there will be an impasse where the two paths diverge. It’s at this impasse of difference that we realize the challenge this presents to us as caretakers. But what about when our children realize it themselves?
Petey lives within a world where he is seeking relatability. He wants to be like his peers, but can’t do all the same things they do. What he finds is his own individuality. When he’s told by his parents that he’s unable to do something, it hurts at first, but he searches for something that he can do rather than feeling sorry for his own circumstance. There’s a valuable lesson to be had here for NICU parents and children alike.
We often get depressed and angry when we are confronted with a circumstance where we have little control over the outcome. In the end, we often find that what we were really depressed and angry about wasn’t our circumstance itself, but rather that others were presented with an easier path. The truth is, no two stories are the same. We all battle our own different stories. Some battle quietly, while others battle and show frustrations. But we all battle.
In the NICU, I found myself getting angry because my son’s path was extremely difficult. To justify my own frustrations, I began comparing my son to other children who may have had an easier path. This wasn’t fair to my son, those other children, or my wife and I. The reality is my son wasn’t those other children. His path was and will always be very different. Preemie children aren’t confronted with as much of an emotional response as adults tend to have. Instead of sulking in their circumstances, when confronted with difficulty, they just persist. It’s all they know how to do.
So, when Petey is confronted with his own difference, he seeks persistence. He figures out that being different doesn’t dictate who you are as a person. It can present difficult challenges, but instead of sulking in the circumstance of the challenge, you keep persisting.
I hope this book will be as important for you as it was for me to write it. I wrote this book to exemplify the persistence and never-give-up mentality that premature children show each and every day. I wrote it so no child out there who believes themselves to be different will ever perceive their difference as deficiency. I wrote it so children and parents alike will realize that they aren’t alone in feeling the way they do. Finally, I wrote it because the way we write stories needs to change. Instead of writing stories about the things we see all the time, we need to write about the stories we don’t see. Take the opportunity and put yourself in someone’s shoes and tell the story they themselves don’t have the strength to tell. Don’t just write another story. Empower the children who seldom get a voice with a voice that can bring the world to its knees. Show them that being different isn’t something to be ashamed of, but something wonderful that should be embraced and celebrated. Show them that they aren’t alone.