The First Day.

Can you EVEN? There are lots more pictures here, for further marveling.

And if you really want to blow your mind sky high, here’s this: I started to call this entry “The First Day of the Rest of Her Life,” and WordPress informed me that I’d already used that title. It was on the entry I posted just a bit over five years ago, announcing that five months after she’d been intubated at birth, Simone was free of breathing assistance for the first time. She’d been home over a month by then, and I’d been lugging around an oxygen tank that seemed like an extension of my baby, and suddenly she was free of tubes and monitor wires, her face unobstructed as I’d only seen it for a few minutes, ever. I made a video of her newly de-cannula-ed self dancing to “No Strings” and posted it here, and it remains one of my favorite moments I’ve captured via Internet. When I watch the video I can still feel the elated swoop in my stomach I felt then, like a glee time-capsule.

Fancy Free from Alexa on Vimeo.

Coming off of supplementary oxygen isn’t really one of your standard kid milestones. Today, after dropping my ordinary kid off at her ordinary school, I spent a lot of the day thinking about how for so long, everything I hoped for, every milestone I coveted for Simone, was something generally accepted as a given for most—a hole-free heart, working kidneys, keeping all of her fingers and limbs, breathing on her own, coming home from the hospital, and, later, things like being able to hear and eat and jump. I’ve been joking lately about all the weeping I was going to do the day Simone started kindergarten—clutching an old onesie, maybe—but when the day came I was shocked to find my eyes entirely dry. The melancholy, the “my-baby’s-growing-up” sting, was there, but I couldn’t quite access it. It was buried, you see, under an awful lot of awe.


  1. kathleenicanrah says:

    This is such a beautiful, perfect post. Happy ordinary everything to you and Simone, who has the best first day of school dress EVER.

  2. Clarabella says:

    That baby had some moves! GO SIMONE! I’ve been reading since before she even existed (or maybe right around when she existed), and just like with my own son (6YO!?!?), I can’t believe how time flies, but I’m glad you got to feel all that awe today. So glad.

  3. Alexicographer says:

    I had just the same sort of thoughts about your journey as I looked at those top photos of Simone, before reading your post or seeing the other images and the video you posted.

    It’s such a delight to see that hearty little girl embarking on her new adventures.

    Wow, just wow. Go, Simone. Go, Alexa.

  4. GingerB says:

    Oh dear, how this made me laugh at myself. I also worried about getting my kindergarten kid to that point, late on walking and other things due to stroke and metabolic disorder, then this year the death of her father, etc., and really we had a very different journey than I could see coming (thank all that is holy). What made me laugh was the agreement that the awe, the joy, and the stomach swoop really do overcome all the fear we feel as mothers even when we can’t see that coming either. Thanks for the years of Simone and you.

  5. Cara says:

    Hell yeah! My nephew suffered severe brain damage at birth. Last weekend, a month before he turns one, my sister showed me how she’s gone through his babybook and changed the ‘firsts.’ Screw first word or first steps; we’re a long way from those. But, he’s got lots and lots of firsts that we remember and celebrate. The first time he breathed alone. The first time he took anything by mouth. The list is endless and miraculous.

  6. K says:

    We don’t know each other really at all, but I’m continuously mystified by how so many of our experiences, and some of the feelings about those experiences, run parallel.

    I’ve wondered how I’ll feel when Iris goes to kindergarten in a few years and it’s just a bit too much to fathom.

  7. Deborah says:

    I remember that video and I remember Simone losing the oxygen tank! She really has come a long way! It’s great to see her heading to kindergarten as a perfectly “normal” child!

  8. Jenn says:

    I teared up a little! I have been reading since way back then, and it’s so super amazing to see how far she has come. Like, just to see it through a computer screen every once in a while. I can only barely imagine how it must feel for you. What a wonderful day! Kindergarten!

  9. ldoo says:

    That last line: It was buried, you see, under an awful lot of awe.

    Wow. That just brought tears to my eyes. Your amazing medical miracle. I’m guessing she’s got quite the fighting spirit. It will serve her well.

Leave a Reply