One of the tough lessons we learn as kids is that life just isn’t fair, but that lesson comes in different ways and often depends on things kids have no control over.
Where we live, the color of our skin and who we are born to are just a few factors that can affect the health of a pregnancy and the care a newborn receives.
My kids are lucky. I had excellent prenatal care, our home was just minutes from a hospital with a NICU that was staffed with every provider we could possibly need, we had health insurance that had no lifetime limitations and, because they are triplets, the hospital staff had been preparing specifically for us.
(It’s true that being triplets increased their risk of preterm birth, but it also increased our awareness and preparedness. The fact remains that premature birth can happen to anyone, but not everyone prepares as well as we were able to.)
Fairness counts less in matters of who got the biggest piece of pizza or whose cupcake has the most icing, but fairness is often a matter of life and death.
Tomorrow is World Prematurity Day. I hope you will consider how much fairness can matter.
As adults, we can take action by donating to March of Dimes, whose mission it is to continue researching ways to reduce the rate of premature births, research life-saving treatments and technologies (some of which saved the lives of Toby, Eleanor and Callista), expand access to healthcare for pregnant women and help healthcare providers improve risk detection and address risk factors. We can call our senators and stress to them the value of healthcare. We can thank obstetricians, neonatologists, nurses and countless other healthcare providers whose work saves lives.
For the younger participants of World Prematurity Day, fostering the basic idea that every person deserves a fair chance at a healthy life is one that can help shape a lifetime self-awareness, advocacy and service.
Wear purple tomorrow, talk to your kids about fairness, share information with others about the risks of prematurity, call your elected officials, donate to March of Dimes — whatever you do, I hope you will join us in calling attention to what is the leading cause of death for children worldwide. We can do better.
You know how a dog tilts his head in curious confusion? That’s the look I’ve gotten lately from Toby, Eleanor and Callista when I’ve mentioned that November is Prematurity Awareness Month and that World Prematurity Day is this Friday.
They know that they were born “really early,” that they were “very sick” and that we were all “worried,” but the impact of those words don’t hit them as they hit me.
I am grateful for that. Our lives could look much different.
Survivor’s guilt is a real thing, and mine manifests in different ways. One way is constantly feeling the responsibility to advocate for all babies to have the best possible outcome just like mine did.
We have participated in March of Dimes’ March for Babies, they have heard stories and seen pictures, but the passionate advocacy just isn’t there.
And before you tell me they’re just kids, let me tell you that these kids have passion to spare. Believe me. So much passion. All day long.
So how do I stoke that fire? How do I help them get it? Stacey Stewart, the current March of Dimes president had a simple suggestion:
We believe every person, adult and child, shares the belief that every baby deserves to be born healthy able to fulfill their potential! Today that’s not possible for millions worldwide. And we can work together to change that.
— Stacey D Stewart (@MarchofDimesPrz) November 14, 2017
My next conversation about World Prematurity Day with Toby, Eleanor and Callista will look more like this. Fairness is one of the issues they are most passionate about, so I can’t see fairness failing to get them fired up.
Regardless of whether this new approach works, I’ll be writing, and we’ll be wearing purple on Nov. 17. What are you doing to support babies everywhere on World Prematurity Day and beyond?
I’ve been testing out those words on family and friends recently, I tossed them out into social media earlier this week, and it’s time to put them down here, my original and reliably always-there place for writing.
Hey, friends. It has been a long time. Guess what! I am writing a book. I have no agent, publisher or deadlines, but I have a lot of what it takes to write a book, and I’ll figure out the rest as I go.
Has it really been a year since my last entry? That’s incredible. I should probably feel guilty about that, but I don’t. As you might remember, I’ve been struggling with what I want this space to be. More than that, I’ve been struggling with what I want to be as a writer.
That kind of struggle takes time, and no matter how many times I brainstormed ways to write through it, nothing felt genuine.
If I’m not being genuine, I’m not doing it.
Hence, my silence.
For better or for worse, I have decided to step back up to the keyboard and write, write, write. I’m still not entirely sure what my writing will look like, but I have an idea, and that’s enough for me.
But first, a story.
(If you’re looking for something direct, short and sweet, you came to the wrong place. If you’re here for a conversation, get cozy and enjoy.)
Earlier this year, I read something on Twitter that caught my eye. I can’t remember what it was, but I clicked on the profile to see who had written it and found myself on the account of a book agent who specialized in nonfiction books. Interesting. More interesting, the agency touted itself for first-time authors, and their query process was fairly simple. Submit a proposal with your idea and your qualifications, no manuscript or chapter summaries required.
It wasn’t the first time the idea of writing a book had crossed my brain, but it was the first time that writing a book didn’t sound too intimidating and overwhelming to even consider.
I fretted, as I do. I asked for advice, as I do. Then I wrote a query, as I have never ever done, and I started to dream.
Putting myself out there felt good. It felt wild and reckless and risky, but it also felt good.
Even the rejection felt good.
Obviously, I was rejected. What you’re reading would have started differently otherwise, right?
Rejection felt good because it didn’t take the staff long to respond, but respond they did. Their response was personal, it was regretful, and it gave me some insight. Not only did it shed some light on what I would need to do to move forward, the rejection also showed me how much I want this to happen.
I want to write a book. As of now, what I want to start working on is a collection of essays that won’t look terribly different from what you see here. In fact, I am going to pull old content from my blog to include after I edit and add to writing that is admittedly raw and unedited. Much of what I have shared here was written with little to no planning and even less time spent on polishing.
Books require polishing, and before I ever considered myself a writer (something that still sounds foreign at times), I was an editor. Polishing what was already written was my jam.
Don’t worry. I’m not going to lift all the old stuff, shine it up and call it a manuscript. Circling back to my lack of regular activity here in the last few years, one thing is certain: I didn’t stop writing because I have nothing left to say. Quite the opposite, I find myself wanting to write more and more about my early experiences in motherhood, and I’m self-aware enough to know that what I experiences was less than typical, but it’s completely relatable.
If that isn’t book material, what is?
One of the most appealing things about that agency that rejected my proposal was their process. Starting to work with professional book people who know what they’re doing and would guide me from the start sounded like ideal. I don’t know how to write a manuscript. I don’t know how to hone my work so it is book-worthy. I don’t know what to focus on, what not to focus on and how to tie it all together.
The rejection was revealing and uplifting, but it also left me overwhelmed. That’s why it happened in May, and I’m just now writing this in November.
“Just write” sounds like helpful, encouraging, open-ended advice, but for someone like me who loves a good plan, writing with no direction is terrifying.
What I’ve failed for years to realize is that I already have the shell of a book, but it’s not the book I had in mind, and I am fully aware that what I’m starting with is going to evolve with time and, hopefully, a book deal.
For now, the book I am working on is a collection of essays about what it’s like to undergo fertility treatments, experience pregnancy loss, conceive triplets, carry a high-risk pregnancy, fight preterm labor, give birth to premature, extremely low-birth-weight babies, spend nearly 10 weeks with three babies in the NICU and breastfeed preemies/triplets/babies/toddlers.
Among other things.
Toby, Eleanor and Callista’s first holiday season was spent in NICU. They were a month old, still required oxygen support and feeding tubes, and our days were spent waiting for them to outgrow episodes of apnea and bradycardia.
I wanted nothing to do with Christmas or the season, but as the days wore on, little surprises kept showing up at their bedsides – Christmas hats knitted by a blog reader, Santa hats knitted by a community group, little ornaments from various anonymous sources, crocheted blankets from “NICU elves.”
Little by little, Christmas came to us from others who took it upon themselves to lift us up when we were exhausted by simply surviving.
Life in the NICU, no matter how many people there became family, was foreign. It was a complete deviation from everything I had come to expect at Christmas, which is typically a time dripping in tradition. We couldn’t do Christmas how we normally did, and I was OK with that. I was also incredibly grateful that my babies had a Christmas, regardless of it being a Christmas entirely new to us and pieced together by family, friends and strangers alike.
I didn’t know then that we were receiving the gift of a new tradition.
Each year since, I have returned the favor by dropping off a bit of Christmas cheer for the babies at our NICU, and my kids are now old enough to join in the family project — candy cane ornaments, this year.
They don’t really understand what NICU life is like — I am thankful that most people don’t. But they know there are babies there with families who want nothing more than to be home together, they imagine how different Christmas in the hospital must be, & they want families to know we are thinking about them.
I don’t remember what our tree at home looked like that year — I don’t even remember decorating one, and I only have a vague recollection of picking one out. I don’t know what gifts I bought for others or received from that year. My memories of that Christmas are mostly soaked in tears, but I also remember the kindness, and I unpack our NICU treasures with reverence each year.
Who’s the leader of the land that’s there for you to stream?
OK, that intro was a little gross, I know.
But it’s true! How much of the world does Disney own or at least rule just a little? A ridiculous amount, that’s for sure. Disney has been on Netflix for some time now, but September marks a new era for the partnership.
This new deal, however changed the game some. We had just bought Zootopia mere weeks before it started streaming, and we have already queued it up at least three times in the last week, just because Netflix makes it easy to watch 15 minutes here or there.
I’m a total superhero junky, and while I’ve been too busy to remember to hit the video store to rent (yes, we still use one!), the new Captain America movie (Civil War, right?), so I’m hopeful it’ll be available to stream as quickly as Zootopia was.
Speaking of Zootopia, I haven’t professed my love for that movie here on my blog. If you haven’t seen it yet – do not pass go, go directly to Netflix and stream it because it. is. great.
I took ETC to see it in the theater this spring, and I was flat-out guffawing at the DMV scene with the sloths.
Aside from the LOLs, the movie is genuinely good. You know how you watch The Little Mermaid now and cringe just a little bit at the example Ariel is setting for your young, impressionable minds? Yeah, Officer Judy Hopps is no Ariel. She is responsible, honorable and has valuable lessons for us all on how to treat each other. She even learns some valuable lessons of her own along the way.
We just won’t talk about my irrational crush on a cartoon fox (voiced by Jason Bateman).
As a Netflix Stream Team member, I was provided with a Sharp Roku television, and I receive free Netflix instant streaming service in exchange for sharing relevant topics and messages with you and your family. All opinions expressed on ActualJenny.com are 100 percent my own – those cannot be bought!