Tuesday, July 7, 2015

Preemie Outcomes

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.
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Anonymous said...

Well said jessy. It's hard to hear that preemies are supposed to defy the odds to become "happy and healthy" when your preemie is on the D side, and being happy and healthy is something that comes and goes and takes a lot of work. Mandi

Marianne said...

Wonderful post! I think this can be applied to other situations as well. In the infertility community people often share with you the "success" stories, I am assuming in order to give you hope. But it is very important to be realistic, and not everyone has the textbook fairy tale, some of us need to find our own happy ending and it can be just as beautiful!

Anonymous said...

Very well written! Even the "supposed" perfect outcomes aren't perfect! Our little man may not truly show signs of disability...we always know that there are possibilities of bad outcomes that are still yet to come. We also are still traumatized by what he went through. We all do our best to cope with what we are given.

Laura said...

This is one of the dangers of social media or any public face, I guess. Is it human nature to want to present your most perfect face instead of your most real one? I stepped away from my blog because I needed to focus more on the joy of my life and my son's real needs. Still searching for my own way to give back to the preemie community while not letting my own guilt, anxiety, and worries overwhelm. Thank you for sharing your beautiful life!

Jessi said...

Yes, definitely. I decided if I was going to continue writing, it needed to be about our reality... all of it.

Unknown said...

Awesome! My hope is that all preemie parents will come to know and accept these truths. Thanks for sharing. I smile when I think of you and wee Jack. May you continue to revel in the amazing mirace that he is!

Jessi said...

You're welcome. Thanks for following our story!