My Son's Disorder Is the (Smelly) Elephant in the Room

L1 syndrome, why do you have to be the elephant in the room? I’d be OK with a smallish, furry four-legged creature or even better an insect… like a fly.


Remember old school Nokia phones? You know, the ones with the limited ringtone options that everyone had? When we were all out on a Saturday night, the phone would ring and all the people with the Nokias would whip out their phones and say hello. And when you were the one who actually got the call, it was like winning the lottery of coolness! L1 syndrome is like that kind of lottery. Only the person on the end isn’t a buddy waiting to meet up with you; it’s more like the secretary calling from your OBGYN office to remind you of your long overdue pap smear… fun fun! (You’re that chick.) Then, of course, all eyes are on you as you take this call — which by the way everyone can hear no matter how hard to you try to lower the volume or jam that phone as close to your ear as possible. The eyes are watching how you take that lottery phone call. The body language, your tone of voice, all privacy gone, you’re under a social microscope.

levi Pair that with the actual life experience of being a mother to a medically fragile preemie with a rare genetic syndrome no one has heard of. The sounds of a level three NICU with all the beeping monitors and machines, teeny tiny babies in these isolates that I affectionately nicknamed “the BBQ on wheels.” The terms no mother should ever understand: “Brady,” “Shunt,” “Echo,” “NG tube,” “TPN,” “D-STAT,” “EEG,” “GERD,” “CSF,” ABCDEFGHIJKLMNOPQRSTUVWXYZ.

Underneath all the wires, stickers, tape and tubing is this small beautiful little baby boy. The strongest fighter I’ve ever had the privilege to meet. Fierce, this-is-the-time, bring-it-all-or-you’re-left-with-nothing, do-or-die world-class fighter. The NICU is not for the faint of heart. It will bring the strong ones to their knees with one swift motion, so quickly you’re not even sure what to do next.

Thank God we made it out alive. We took our freedom and ran. We never looked back. We were happy to start living our new lives.

L1 syndrome, you’re a smelly elephant! We may not be old in age, but we’re well on our journey. We have therapies… all kinds of therapies. Speech, occupational, physical, MEDEK, swimming, Snoezelen, music, oral motor. We have a complex care team overseeing every detail. A rockstar neurologist, siblings, parents, grandparents, social workers, Rabbis, a community and our own L1 worldwide family.

You may be that huge elephant we have to learn to face daily, but you will not rob us of our mission to love our sweet little boy, Levi, for as long as we have him.

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