Parenting Special Needs

When ‘Fine’ Isn’t Fine: Special Needs & Strained Dinner Conversations


By Jennifer Philp-Zakic of Branko Has Funny Bones

I sit and stare, nervously taking a large a sip of wine. I’m concerned I’ll run out too quickly and that one of my dinner companions will make a mental note to tell her husband later on in the night that she “drinks too much/too fast/too loudly.”

I need to pee, but I’m hesitant to stand up in case the server comes back and I miss my chance to order another glass of Rioja. Because I’m going to need another glass of Rioja (maybe 3?) to get through the night. Fuck, let’s be honest: I don’t want to get through the rest of the night. I just want to get through the next five minutes without bursting into tears or saying something cruel and irrevocable.

Why did I do this? Why didn’t I just say no? I’m fine with close friends but terrible with casual acquaintances. Small talk is my worst enemy. Why did I come?

The server comes again, this time taking our order. (I’m having the special.)

I suddenly realize I’m doing plenty of listening — like, all the fucking listening — but not a whole lot of talking. I’m not talking. Sure they ask how my son is doing, but all I say is, “Fine. He’s fine!”

I hate hearing these words. I regret them so fast; I internally scold myself. I can’t explain what “fine” actually means tonight or tomorrow or ever, and it’s hard to share things when my head hurts…my heart hurts. It’s hard to explain things when the words I’ve become accustomed to hearing — the diagnosis I’ve heard at my son’s appointments many times over the past four years — still startle me: lung disease, weak bones, skeletal dysplasia, rib deformities, genetic conditions.

I can’t share the fact that my son cried for 40 minutes today while I tried to coax him away from the living room, away from his protective bubble of toys and towards the kitchen table so that he could eat dinner. I can’t share that this morning we took him for an extra vaccination for kids with impaired respiratory function which required two giant needles, given simultaneously, one in each thigh. And that he gets to repeat this procedure every month, all winter long. Can’t they space them out? Do one right after the other?

I can’t tell them how I’ve been searching for winter boots for a year now in order to find ones that fit over his leg braces.

I can share only the most basic, barebones facts: He needs major surgery in less than a month to replace the rods in his bones that his 4-year old body has outgrown. I feel somewhat proud that he’s outgrown something, as if he had outgrown a pair of jeans and we were going shopping for new ones. And, after sharing, I feel a waft of kinship with my dinner companions…at least for half a second.

I’m sure he’ll be fine. Those doctors do this sort of thing all the time!

I so desperately crave these words, but their words don’t match their faces. And their faces scream I’m glad I’m not you; I’m glad I’m not you.

They continue with well-meaning yet super shitty platitudes: I just don’t know how you do it. You’re awesome. He’s awesome. I can’t even imagine. God-blah-blah-blah what you can handle. But this pretend conversation is always so much nicer, easier, and tidier in my head.

I listen. I nod. I secretly count the number of times the conversation winds back to the woes and tribulations of my dinner companions. I hear the problems of their typically-developing children: haircuts, potty-training, tricycles, too much Netflix, skinned knees, runny noses, trips to Florida, the struggles of back-to-school shopping.

And nobody — nobody — prepares you for how painful an innocuous list of normal parenting stuff will sound. You’re tired? Really? Try sleeping on a shitty hospital cot for even ONE night. You wouldn’t be able to do it. I just know you couldn’t handle it. Not the way I handle it.

I try to remind myself that things are just different for me now. I can’t listen to another parent complain about snow or new glasses or ear infections. But I’m so good, an expert really, at placating the gnawing urge to crawl under the table.

So I listen. I nod. I sit mostly silent…and I hope they invite me  out again.

This post originally appeared on Branko Has Funny Bones.



Jennifer is a teacher and mother of two kids. Her son was born with a rare genetic disease that has resulted in a variety of serious health conditions, two of which are a penchant for Dora and all things Thomas. She writes about him at Branko Has Funny Bones and can be followed on Twitter and Facebook.