“What’s a… syndrome?”

It was a quiet and unassuming Tuesday night around the dinner table. I happily had both of our girls that night for supper. As we tucked into our pasta, peas and roast chicken, I asked my usual series of questions for the girls when they’re together around a table.

How were you proud of yourselves today?

What new thing did you try today?

Have either of you so far failed this week?

And so on…

These are questions I’ve gathered from books or blogs and the girls excitedly raise their hands to answer them. Anna, almost 7, is a bit more practiced with telling her stories and shares poignant insights into her day or the week thus far. Landon tries to keep up, usually adding something about trying a cucumber, the playground with her buddies and dancing with Ms. Robbins. One or both of them will then make up a joke that’s something about a cow crossing a road, and the moooovies. It’s adorable, light fare for a weekday. It’s also my favorite thing in the world, to have them here, opening themselves up to me.

There we sit, as the glittered trees on the table reflect light in our eyes, laughing at age-appropriate and bizarrely themed knock-knock jokes. When… suddenly… Landon jolts forward, coughing with her whole body, struggling with food in her throat. I lunge toward her, but quickly she is able on her own to clear her throat. Phew.

We take three deep breaths, sip our milk slowly. And I kneel before her.

“Landon, was that bite too big for you?” I say hiding the slight panic in my voice.

She nods “I’m okay momma” she says, going back to bopping her head from side to side.

“Landon, mommy will cut these up smaller, but even when I can’t, you need to take smaller bites sweetheart. Your airway is really small, baby. Right here (as I point toward my throat), it’s little. Promise mommy you’ll practice taking smaller bites, okay?”

“Okaaaaaay,” she smiles.

Anna, inquisitive about the world as ever, asks me “why is her throat really small?”

Without thinking or skipping a beat I say “Landon has a rare syndrome which means she’s built a little bit differently- smaller ears, smaller airway.”

She thinks about this, cocking her head to the side. “What’s a… syndrome?” Anna asks.

Right. Syndrome. A big word for small girls. One I use so often that it comfortably now sits on my most used words list and one I rattle on about with pride.

I freeze for what felt like 10 minutes but in reality was mere seconds. Showtime, mom. I felt instant pressure for a life changing conversation, one where you must use your most perfect words. Words that express a definitive, science-related answer while also conveying love, compassion, acceptance, and yet I should not make a big deal out of it. Super easy and no pressure. Go!

“Great question, honey. You know how we all have things that make us different or unique? Well, a syndrome is when there’s a collection of unique things…or differences that commonly occur together. We know that they occur often together because there’s a group of people who all share these same things. And Landon has one, it’s pretty rare actually, and I am constantly connecting with people from all over the world who have it.  Cool, huh?”

I took a long, audible, deep breath and I study each girl. Anna is nodding, and says “that’s cool.” Landon is not paying attention to me, which is normal when there’s pasta in front of her.  When she looks up at me she says “knock knock” and I know the lesson is over.

A first. Explaining this stuff to the children, to which I belong. These words: differences, syndrome, Treacher Collins, bahas, cochlea, surgery, microtia. I have thought and written often about discussing them with the public, with specialists, with other people’s children, even with bullies.  And yet, I had not given sincere thought as to how to define them or discuss them properly with our own children. Probably because of Landon’s age, and the fact that she has no clue she’s any different than her peers. And well, frankly, I had not been asked anything yet.

I am still thinking about that dinner. About my answer. Still hoping and wondering about what resonated, if anything, with either of them. Still second guessing my chose of words and if I should have expanded. What else can I say that empowers them to answer questions they may get? Was my answer too “Merriam Webster- esque?”

All of us “different” parents will face these kinds of questions, and some will be infinitely harder. We can only answer honestly, with love and acceptance, all the while cutting ourselves some slack. We will get better at all of this, the longer we’re in this game.

A lesson I’ll do my best to remember myself.

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XOXO

Eloise

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One thought on ““What’s a… syndrome?”

  1. Hi! I just came across your blog somehow, and I have laughed, cried, and smiled uncontrollably at your words. Your family is beautiful. I absolutely love your quote, “we will get better at all of this, the longer we’re in this game.” I started on your step-mom post, and as I am not a step-mom yet, I am in a serious relationship with a man with two children (and I am still actively learning my role in all of this). It was so insightful. Thank you for your beautiful words and for sharing your family.

    -April

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