Going Viral: a response to the overly dramatic media

Don’t tell GI we’ve gone viral – we’ll be admitted for observation!

If my math is correct, in the last five days traffic to my little blog has grown by 100,000%.

Let me take a minute to let that number sink into my skull, because I still can’t quite wrap my head around it.

I thought my last post would be well-received, and I knew it had a broader appeal because it’s a lot less narrowly-focused than many of my posts. And I made it public and tagged the Cardinals on purpose, after all, hoping they would see it and recognize the usher who helped us. But I am humbled and amazed by the response I have seen to this simple story of kindness.

I want to take a moment, though, to talk about the many outlets who have incorporated varying degrees of overdramatization into my little story. I was not “frantic” or “desperate”; my son was not in grave danger, and he’s not currently critically ill. It doesn’t offend me to hear those things – I just think framing it that way is missing the point.

To me, this story isn’t about helping a sick child at all. Almost anyone would do everything in their power to help a child in dire need, but my son wasn’t facing an urgent situation. We were living a more or less normal day for us, which in our lives just happens to be a little harder than it is for your typical family. The real beauty of this story, to me, is that my son appears to be healthy, and the usher was committed to helping us simply because he could, without any underlying sense of urgency to help a “frantic” mother or a “very ill” child. I think that’s what resonates with people; that we all have an endless number of opportunities to be kind, and we never know how big an impact may be made by a small act of kindness.

My family faces a series of ongoing battles that are so pervasive and so integrated into the fabric of our lives at this point that I think we’re not always even aware that we’re constantly prepared for battle – until we are shown so poignantly that we don’t always have to be. This was made clear to me at the ballgame that day, and recently stood out in stark relief again when I spoke to L’s daycare director about his upcoming surgery for the first time. We love his school and I expected nothing less than empathy and understanding, but it wasn’t until she immediately and without question offered to be more accommodating than we’d even hoped that I realized I had subconsciously come prepared to fight for what we needed – because that is so often required of us.

You could fill an entire, ragey blog with the mess of insurance denials and claims that are repeatedly processed improperly (by complete and total accident, they swear, and they have their best people looking into it….), but beyond all that, every tiny interaction with my son is a negotiation with his health. For the most part these negotiations are not frantic or desperate situations; they are everyday things. He needs to eat far better, and far more, than most kids his age, and we also have to keep a careful balance of liquid and solid intake, so I am constantly focused on what’s going in; but he’s also three years old, and picky and spirited and stubborn, so I have to micromanage his intake without pushing hard enough for him to notice. He has a sterile dressing to maintain, but is also increasingly distressed by anyone touching his dressing, so every time we patch it or change it involves a series of careful negotiations in which we gently walk him through the process, maintaining a precarious balance between being firm enough to keep his dressing site sterile and safe, and being gentle enough to keep his stress level at a point that will make the next dressing change manageable. We frequently make small decisions that boil down to the lesser of two evils; and we need to minimize variables if we are to have any chance at deciphering cause and effect and treatment of everyday symptoms, but it’s incredibly hard to do that without limiting our lives.

And when I start to get cocky because my constant and extensive efforts are seeming to pay off at last, life often takes the opportunity to deflate my balloon juuuuuust enough to remind me who’s boss. For example, a couple days ago at lunchtime I successfully averted an overtired meltdown and put the kibosh on overdoing it on his beloved Drip Drop at the same time, and then, with much calculated negotiating and covert encouragement, managed to get my very picky three year old with mild sensory issues to eat multiple food groups! And not just yogurt and his two toddler-approved fruits, but also bites of bread and turkey! And not just bread and turkey, but bread that looked different and turkey in the SAME BITE like a REAL SANDWICH!!!!

And then while we were at the pantry getting the banana I’d promised him as a reward for this Very Major Accomplishment, and talking about taking even more bites, the dog snuck in and ate the rest of the motherflipping sandwich.

These kinds of things don’t leave me frantic, or even generally grumpy (at least most of the time). They are everyday occurrences that leave me resigned to things never coming easily no matter how much we direct every ounce of our energy at working to make things go smoothly. I wasn’t approaching the usher terribly worried about my son or despairing about how horrible this situation was; anywhere we go, we’re prepared to leave early for a number of reasons (only a few of which involve our underpreparedness!). I thought I’d see if I could find some milk, and if I didn’t we’d probably leave a lot earlier than we’d hoped, and that would be that. Not that we would welcome that, but it’s representative of that enduring, exhausting resignedness. The gift the usher gave us was the unexpected ability to set that aside and succeed despite the issue that arose, as one issue or another often does, and to find that success without putting up my mama bear hackles or navigating a series of negotiations and concessions (although we did end up navigating quite a series of concession stands!), but rather by simply accepting an act of kindness offered for no other reason than that someone saw an opportunity to help, and did so.

None of the things that I’ve described are major (or frantic or desperate) obstacles to anything, on their own. But they permeate every fiber of my being and every moment of my life. It’s not something I’m constantly conscious of; but it does very much shape how I approach the world. I have come to expect to have to row against the current, and so an encounter like this comes as a much-needed reminder that we don’t have to do it all alone, after all, and that people are generally good.

Thank you, to all those of you who have shared our story, sent your love and shared stories of your own. I hope you keep reading. And to anyone else out there struggling against the current – don’t hesitate to reach out. You are the reason I write, and maybe together we can turn the tide.

Yadi Shirt in the Swing cropped

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4 thoughts on “Going Viral: a response to the overly dramatic media

  1. I absolutely love this. When a friend tagged me in I and I started reading I had no clue your son had SBS and was in tears because of the kindness of the usher. Then once I realized he is a short gut warrior it instantly turned on my mom nurse instinct of knowing the struggle of always being ready for a battle…. Always being prepared for something to possibly go wrong. It can be exhausting but I love to hear other mothers who get it. And I’m so glad your story is raising awareness. Keep posting. I love your blog. You’re a great writer.

    Liked by 1 person

  2. Hello,

    I read your story on the Mighty and as the oldest kid in my family, I just want the confirm that I completely understood the simple gratitude for the usher, no “drama” overkill thrown in. Your writing is excellent and your parenting better. I can’t wait to dive into your blog.

    Like

  3. Glad you got a little respite at the game and a whole lot of positive vibes sent your way because you reached out to let people know how much that meant. Hoping all goes well with L’s surgery; there are a lot more of us out here now rooting for him, as well as for you and your husband. (And I hope that knowledge helps you, as it did for me to know people we’d never met were sending thoughts and prayers to my son during his 2.5 months in the NICU.) Keep speaking your truth and we’ll keep listening. *mom hugs*

    Like

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