Care Bear Stare

I was sitting down for dinner at a restaurant with a friend when a young family caught my eye. They were sitting to my left and a little behind me, so it was difficult to take them in without being too obvious. But I was pretty sure the child, which the mom was holding like an infant, was a little large to be typically held that way.

When the server came by to take our drink order I stole another glance. Was the child asleep or was that low muscle tone? I could almost feel Adelaide in my arms, the entirety of her weight against my body.

My friend 's voice, telling a story about a recent trip, brought me back to the two-top in the upscale American chain restaurant. I enjoyed our dinner, the conversation, and our food but I kept feeling this pull toward the family. Were they on a constant watch for seizures? Had they packed a feed for a g-tube? Were their arms tired?

Towards the end of our dinner, I stole another glance back and to the left. Dad had taken over and was standing while holding their daughter, swaying back and forth. She was definitely older than an infant, and as he readjusted her body, I saw a g-tube poke out from under her shirt. I saw his daughters face, eyes open and expressive in a language that her parents were certainly fluent.

In a matter of moments, I felt like I knew them intimately. I didn’t of course, I knew nothing about them. Nothing about their daughter’s symptoms, prognosis, or the specifics of their day-to-day life. But also, I probably knew them better than anyone else in that restaurant.

I longed to tell them that I saw them. That they weren’t alone. That I knew how hard this life was, but also to enjoy every second of it that they could.

And then I couldn’t help but think of those insurance commercials (Nationwide, maybe?) where the person who has just bought their first home turns into their parents and overshares with strangers. This family didn’t go out to eat hoping to make a connection. They just wanted to be able to eat a meal at a restaurant without a medical emergency.

So, instead, I finished my dinner.

While we were waiting for the server to return with our check, I couldn’t help myself and pointed the family out to my friend.

“Do you see their daughter? She reminds me so much of Adelaide.”

“Why don’t you go up and introduce yourself?” My friend suggested.

“And say what?” I had already played this out in my head, “That their daughter reminds me of my daughter? And then when they ask about her, I have to tell them that she’s dead. I don’t think so.”

“Right, ok, so you will not be saying anything,” She agreed.

In another life I would have had Adelaide with me. I would have wheeled her by the family in her stroller mid g-tube feed and exchanged knowing smiles with the family. We wouldn’t have had to say anything to each other. It would just be a shared knowing.

Or perhaps we would stop and chat for a moment. Exchange symptoms, possible diagnosis, doctors and treatments. Then we would part ways wondering if we would run into each other again at the hospital or connect on social media.

But none of that would be happening today because as much as I am still a part of the epilepsy, rare disease, and medically complex communities – my living link is gone. And even though that family was well aware of how fragile their daughter’s life is, they didn’t need me presenting an in their face reminder.

I left the restaurant that day without saying anything to the family. It was not the time or the place. This blog/newsletter/social media post however, is the place.

So, to all of the families who are crushed by yet another seizure. To the caregiver who didn’t secure the tube feed to the port fully and now has to clean up formula that has pumped freely into their child’s clothing and chair. And to the parent that is fucking exhausted and dreams of a moment when they aren’t anticipating the next emergency: I see you.

I see you at the restaurant, in the park, and at the dance recital. I won’t bother you, but I will Care Bear stare the shit out of you. And I hope you feel all the love, strength, and positive energy that I am sending your way. Because I am cheering for you and should the worst happen and someday you are the one without the living link, I promise that you will survive.

ID: Kelly is standing wearing a peach polka dot dress and a ladybug headband. She is holding Adelaide like an infant and smiling down at her. Adelaide is wearing a mint green, tulle dress. Her face is tilted up toward Kelly and she has an oxygen cannula under her nose.