A few months ago, Madeleine had an MRI to look at her ventricles one year on from her shunt surgery. It showed a perfectly normal toddler brain.
It’s the news we hoped for, but never thought we would get. It’s what we thought about on the really bad days in the NICU, when the updates were starting to get scary and we wondered if she could possibly still end up being a hilarious, rambunctious, 18-month old one day who runs and talks and laughs and squeezes your face when she gives you a kiss on the lips. But here we are, with all of it. And yet, somehow, it is still bittersweet.
When I speak to new preemie parents, one of the things I sometimes share with them is that having a baby in the NICU teaches you just how much you are actually able to accept when it comes to your children. When you first get pregnant, you probably more or less want a perfect baby. A happy, fat, screaming baby, and you figure you’ll probably get it because, isn’t that what most people get? But then something goes wrong, and your baby comes out far too early, but late enough to still have a shot at life. And you think, “well, as long as they’re still mostly perfect, as long as they can still run and play and laugh and go to school and make friends…it’ll be okay.” You lower the bar, but not too much, because this can still work out. This could still be nothing.
And then the day comes when you’re standing there, waiting for your kid to be wheeled into the OR, watching her scream as the anesthetist puts a mask over her face so she’ll go to sleep, and you find yourself thinking, “as long as she lives, I’ll take anything.”
Madeleine’s MRI results are a testament both to the fantastic medical care she received as an infant, as well as to her remarkable, inspiring preemie warrior spirit. But the thing is…I really didn’t need for it to be this good. We didn’t actually need to dodge all the bullets. She didn’t have to escape from this pretty much unscathed. I realize now that it could have all gone horribly wrong in the worst ways and I’d still be head over heels in love with being Madeleine’s mom.
I don’t really know why I feel the need to say all of this, why I always have to urge to qualify our good news. Why it doesn’t quite feel right when our loved ones express their joy over our wonderful outcome. I certainly don’t mean to sound ungrateful, or like I don’t understand how incredibly, incredibly lucky we’ve been. And I’m definitely not saying that I don’t want this amazing outcome, because, my goodness, I do. I guess I just see now how little it actually matters. The things we thought meant everything, the scary, supposed “worst case scenarios” we had envisioned, now I realize we could have handled it all. And that we still CAN handle it if something unexpected happens in the future.
If you have a baby in the NICU right now, I know this might be hard to believe. But you can actually handle this. You will actually be okay eventually. Your life as a parent might not end up looking anything like what you thought it would, it might not look the same as anyone else’s life around you, but the truth is that it doesn’t matter so much what it ends up looking like. And It doesn’t have to go right to still be beautiful.