|Jack and I hanging out by the Boulder River. Something I never could have imagined during the NICU.|
There are no absolutes on this preemie road except that each preemie is unique. That has been my go-to response as of late when I'm asked questions or for advice, but it took me a long time to get here. It's not that I didn't understand the complexities of preemie development or that I hadn't heard of preemie struggles, it's just that I only wanted to convey rose-colored outcomes. Why? Because I so desperately wanted them for Jack. I did not want to be one of "those" preemie families.
Something changed around the time I wasn't afraid of the D-word (disability) anymore. In accepting our preemie outcome and most importantly, Jack, for who he is, I decided that our story is still pretty spectacular. And this little slice of the internet was going to get real. You may have noticed that the tone of what I say about prematurity has changed since I first started telling our story. This is just a reflection of the growth and healing that happens after six years post-NICU. Yes, Jack is our complete and total miracle, he's still our MJ, but right alongside that story is the reality that he has very difficult medical issues, ones that won't resolve or go away. Simply, he will not grow out the issues that started because of prematurity.
I won't deny that it used to be hard seeing other preemies doing better than him, especially when they were celebrated for doing so well (as if they had any control over their own outcome). The struggle that I notice in preemie circles is that we desperately crave and promote those miracle stories, the "perfect" outcomes so to speak, often to the detriment of a large portion of the preemie population. And I get this. Completely, I do. Of course my desire, still to this very day, is to flee from the pain, not lean into it. But the flip side is that as soon as I learned to lean into the reality of our situation, I was no longer uncomfortable with the D-word or any other word, for that matter. I want more families to experience that freedom sooner than we did.
Not fleeing from reality taught me the most important lesson - that of innate worth. Not what society thinks, not what the preemie community thinks, but the truth that worth is not based on ability or outcome. Worth is worth. These lessons didn't come because I suddenly had a revelation, but because slowly but surely, I could see what was right in front of me.
Preemie parents spend a lot of time in denial (speaking from experience here). We run the opposite direction of a lot of things because we can't imagine one more thing being placed in our lap. But the more I get to know you wise folk out there in Preemieland, the more I realize I spent way too much time being afraid, because our life, disability and all, is really good. I don't care as much about the developmental boogeyman or the dreaded phrases anymore. They are what they are. Just like Jack is who he is.
The most important thing I've realized is that hope isn't relayed through a perfect story or preemie outcome, but in accepting the situation we find ourselves in. There's a whole lot of strength, purpose, and joy in that. Let's share more of those kind of stories.