In the last 2 years, there are a few terms that I’ve learned to hate about prematurity…preemie (sounds too cute for my liking), former preemie (as if the little one can suddenly be born weeks later than he actually was), “NICU roller coaster” (let me tell you, it was no fun at all) "catch up" ….to name a few. If you know anything about prematurity, you have probably heard that preemies “catch up by age 2.” Let’s just be clear that preemies don’t always “catch up” by two and really, should they be expected to? Let’s take Jack, for example. Born at 28 weeks, spent 112 days in the hospital, came home with O2 support and an NG tube (not to mention multiple meds)…I don’t expect a sick baby like him to suddenly catch up by 2 or by any age, for that matter. Jack will be Jack and do whatever Jack will do when he does it. That doesn’t mean that I don’t want him to use a spoon to eat or be able to solve Calculus proofs. But it does mean that I’m trying my best to not to compare him to anyone but himself! Unfortunately, babies born premature are under the microscope and we live in a society of comparison…be it medical professionals, therapists, or parents…so we are acutely aware of when he is “supposed” to do things and we are definitely taking advantage of any and all support and resources to help him do so.
So, Jack hasn’t caught up by two…and neither have I. I’ll admit that I would love for prematurity to no longer affect his life or mine at age 2. But, I can say we are less focused on prematurity (as it pertains to Jack) and more focused on having fun! (We leave for Disney World in just a few days.) But, I do still have a folder on my laptop titled “You Don’t Know Jack” with a file titled "Random Thoughts” that is over 18 pages long…and that’s just the stuff that I find time to type (not to mention all that floats around in my head on a daily basis). So, yes, I still think about prematurity on a daily basis. So it’s safe to state that I have a lot to say about prematurity. But there are a few bloggers out there who say it even better. I read this article the other day (A Different Journey: Reactions to a Premature Birth) and it described almost exactly how I’ve been feeling the last two years. Here’s a small excerpt:
"None of us will ever be the same again — but a lot of the time, we’re not so sure that anybody knows what we mean. Our journey was distinct. Our transformation took a startling path — perhaps a longer road or one with more twists and turns. We are different now. And the unease we feel, I believe, comes in part from our struggle to figure out who we are now, how we fit in to the world we used to inhabit, and how we want to move forward. […] Some of us feel like walking wounded much of the time. Ever vigilant, we wait for the next shoe to drop, and then the next one and the next one. Others may feel more robust now, but still different than before. It’s not just because of being parents to this new baby — but because of how you got there. You have seen something profoundly different. You know things that you didn’t know before, and that many parents out there still don’t know. […] It’s because we love as deeply as we do that we struggle so much. We want our children to sail through. We want to spare them any suffering. We want them to have every possible chance to thrive. And as parents, we are faced with the reality that we can’t always shield our children. We cannot take over, take all control and make everything all right. It’s terrifying. And infuriating. And so terribly sad. Most parents gain this in practical experience over the course of a lifetime of parenting. Parents of preemies are in the unique position of facing this reality much, much sooner.”
I have absolutely changed (though I fought that change for a long while). I feel more focused, less funny, more aware, less stressed (about things other than Jack), more anxious, less judgemental, more caring, and less career-driven. I surprised myself by not being as “lost” as I thought I would be by giving up my career. But I gained so much (besides weight...haha), by choosing to stay home with Jack. I feel like a better parent than the parent I thought I would be. I never thought I would breastfeed or be a stay-at-home-mom, but I did/do both (pumping counts!). I love the mundane things about being Jack’s mom: buying whole milk, having a cabinet dedicated to Jack’s food, washing & folding his little clothes, reading books multiple times a day (hey, I did that before), changing diapers. My favorite room in our house, the place where I feel most comfortable and at-ease, is Jack’s room. I’ve come a long way from crying at the sight of his empty crib when he was in the NICU, that’s for sure. When you have to discuss all the prematurity issues: developmental delays, lung disease, brain bleeds, Cerebral Palsy, etc. before birth you start losing sight of the future you expected for your child. So, seeing Jack run into the ocean or responding to a story hour prompt…always amazes me. I will never stop being amazed. He wasn’t just born small, he was born too soon and undeveloped…all those things can be so detrimental and affect his future. We couldn’t say for sure if he would walk or would talk or do any of the awesome things he does today. So forgive me if I seem too excited or too surprised as these things happen and I post about him on Facebook too often. When the only experience you have with becoming a parent starts as traumatically as ours, and you have no other perspective to bring…well, it really affects your view. With each new thing that Jack does (from eating 2 chicken McNuggets to singing along with his Mickey songs in the car), my unease and anxiety lessens just a little bit. All of these things are helping me “catch up” to being a parent who is not so overwhelmed by prematurity.
However, when I think about moving forward, prematurity is still in the picture; what I most want to do is help other families affected by prematurity. I’m doing that in many ways lately…by blogging about our experience so other families don’t feel so isolated and alone…creating a new NICU binder for families at Penn State Hershey Children’s Hospital (PSHCH) …answering questions in an online support group…connecting with local NICU/preemie families…co-chairing the new NICU Family Advisory Council at PSHCH. (I may have given up one career, but I’ve obviously found myself another one!) I’m also on the Board of Directors of a newly created organization, The Foundation for Prematurity. So many of you have heard me express how difficult life can be after NICU discharge – therapies, doctor appointments, medications, feeding issues, anxiety, RSV, insurance woes . The Foundation for Prematurity hopes to help families navigate life after the NICU and also provide grants to help with the financial burden as well. Check us out at The Foundation for Prematurity (nevertoosmall.org) or like us on Facebook https://www.facebook.com/TheFoundationForPrematurity.
There's a lot of healing that can happen, for me anyway, when helping families like ours.
Here’s a little flashback from just 2 years ago….Jack on discharge day (11.30.10):