Yeah, you caught that, right? "Prematurity is pretty much behind us?"
It's very typical for March of Dimes families to move on about 4-5 years after their brush with prematurity. For a lot of families, prematurity is pretty much behind them by then. Most preemies have graduated from therapy and are proudly wearing their 4T and 5T clothes, and moms and dads are surprising people by saying, "She was born 8 weeks early! You'd never know, would you?" And then there are some of us preemie families who are still receiving diagnoses. Like the large-ish one we were recently dealt.
Honestly (can I write any other way?), we had started to think of Becca as a "normal" child.* For the past couple of years, we felt like we were on the border of the special needs classification. Sure, she's got a feeding tube, but that's coming out soon, right? Sure, she's still in therapy, but it's a lot less frequent. Sure, she's in the special ed program, but at one point, her teacher suggested that she might even qualify to be in the program as a peer. Surely we are just a year or so out from leaving those "needs" behind us and just having a "special" child!
When shit first hit the fan in my pregnancy with Becca and in her first weeks and months of life, we knew we were likely staring down the barrel of a lifetime of disabilities. And we were on board. Of course we would give her a lifetime of care! Of course we would do anything she needed! Of course we would completely rearrange our lives to do right by her! Never for a moment did we stop pulling for her and her survival. And I don't regret for a second the choices we made to give a chance at life. Not a second.
But really, now, five years later, I can say that I didn't have a clue what I was talking about then. I had no idea what it was like to live day in and day out as a family with a child with special needs. I had no idea how hard even the simplest things would be, not just for my child, but for our entire family. How things like job opportunities, finances, family gatherings, housing, friendships, and the health of SuperDad and me, not to mention our marriage, would be affected by having a child with special needs. It's not that I hadn't been around people with special needs before. I had had many opportunities to glimpse into the life of families of kids with special needs. It's just that it looks so different from the outside looking in.
I'm not trying to be all whiney and woe-is-me, and I'll spare you all the gloomy details of the day to day struggles of it all. (Especially because even though we're back in a difficult spot at the moment, there is far more joy than gloom in our day to day.) I'm just trying to say that unless you have been through a similar experience - and continue to live in it - you don't know what it's like. And I know a lot of families whose kids are way more complicated than Becca. And I don't have a clue what it is like for them. But I guess I'm just asking you to trust me: having a child with special needs sucks. It doesn't suck because my kid sucks - she's friggin' awesome. It sucks because I watch her have to work so so so so so hard for every bit of progress she makes. I have to watch her hurt and try and fail and have other kids not understand her and get poked and prodded and told that this part and that part of her are broken. I have to hear her say, "Oh no! Not my hospital aGAIN!" I have to watch her live with the legacy of her early birth. Every day. She can't shake it. Even though I had convinced myself that she would, any day now. She can't. She won't.
With her latest diagnosis, Becca has landed squarely in the "special needs" category for the rest of her life. She will always be hearing impaired. That means she will always be "disabled." Do I think it will hold her back? Absolutely not. "Special needs" and "disabled" are simply labels. But it does mean that everything will, once again, be harder for her. Forever.
So yeah, a few weeks ago, I thought we might actually slowly graduate from being a March of Dimes family. Not anymore. While we are still trying to find the cause of Becca's progressive hearing loss, the overwhelming likelihood is that whatever reason we find, it will be traced back to her premature birth. Whether it's due to structural abnormalities, ototoxic medicines or her underlying syndrome, the cause of those issues, at their root, is most likely that she was malnourished in the womb and then born neurologically immature. My narrative for her story has gone from, "She had a really rough start, but she's doing amazingly well. We expect that eventually you'll never know that she was born so early, except she'll probably always be small," to "She had a really rough start, but she's doing amazingly well. She'll probably eventually catch up developmentally, but she's always going to have some issues, though she's smart as a whip." (Note that I feel like I have to add the bit about her intelligence - because as soon as you say that someone has special needs, people always make assumptions about what exactly those needs are.)
In the end, that's not a big deal. Not at all. We have still been very, very lucky with her. She is still amazing. But I'm reminded that we can't leave it all behind. So when I was thinking about themes for this year's walk, the one that kept rising to the top was, to put it delicately: "We march because...shit keeps happening." Seriously. But that's not something I want to put on a t-shirt and remember the year by, so I kept working on it. And this year, Becca was able to help me with it. (Smart as a whip, remember?) She is way into superheroes these days and is always rescuing this or that creature. And she continues to be the best big sister in the world and so in love with Baby James, not to mention a passionate fan of the March of Dimes (seriously - knows the logo and everything). So it's only natural (when I put my bitterness aside ;) ) that this year's theme should be:
We march because...every baby needs a SUPERHERO!And I've got just the superhero for you!
Becca is ready to be a superhero for babies, and she wants YOU to join her! Click HERE to join our team and/or donate to help Becca save babies by helping them be born healthy. Being born early and before your body, especially your brain and other organs, are ready, affects every facet of development - so the March of Dimes' research on fetal development affects just about literally every other health and development issue out there. No kidding. Every bodily system is touched by prematurity, so every system is touched by their research. So supporting the March of Dimes really is like being a superhero for kids with all kinds of different issues. It's the broad swoop of medical research charities. And since everyone starts out as a baby, everyone can be a March of Dimes family, too. Together, we can help all our special kids have a chance to dance and sing in their superhero capes - because wouldn't you give anything to make this possible?:
Love that kid. And I know you do, too. Please join us.
*Yes, in many ways, Becca is a normal child. For more on what I mean by this comment, revisit my post On NOT Being Normal. And when I can find it, I'll link to it. :)