A sweet friend sent me a note recently, asking after Noah. She responded to MY response with this:
“I’m so sorry. I’m always hoping that your life is as pretty as your pictures. I suppose it’s just wishful thinking on my part, but deep down I know that it’s probably not. Hugs.”
It got me thinking about blogging, and about social media in general (let’s face it, you may not blog but you’re probably on Facebook. Or Instagram. Or Pinterest.).
About how – on the “face” of things – our lives can be presented however we like. For me and my blog it’s further complicated by the fact that I write about aesthetically pleasing things – gardens, cakes, crafts – with “pretty pictures” to accompany.
But I can’t imagine that anyone would think that my posts in some way gauge what’s happening for me in real life. I was discussing this over lunch with another blogger/friend who surmised that, in fact, my work might be a welcome diversion from the struggles.
And she was right. For the most part, the four sites (including my own, how did THAT happen?) that I write for allow me – even briefly – to immerse myself in beautiful, delicious, fragrant things.
Things I can control.
Things that have a definitive outcome.
In short, the exact opposite of what we’re going through with Noah right now.
Seizure disorder is – to put it mildly – a very challenging problem to “fix”. The first medication – which seemed to be working so well – suddenly stopped. Noah’s seizure activity is not the typical kind that we envision (limbs shaking, eyes rolling back in the head) when we think of such a thing. It’s more, as the doctor describes it, a “constant electrical storm in his brain”.
So on the surface he is a sweet, charming, friendly and engaged boy. He’s bright, conversant and articulate – unusual for a child with the level of brain activity his EEG’s reveal (and why his condition went undiagnosed for so long).
But we can’t seem to get the meds “just right”. And there are side effects. And mood swings. And behavioral issues. And we need to “hang in” while we wind down one medication and ramp up the new one.
And he’s five. Which is great, because we discovered this while he is still so very young. But it layers on an additional challenge as he can’t really partner with us. We don’t know what or how he’s feeling inside – either physically OR emotionally. So we have to do the work for him – watching, monitoring, taking note of everything on the chance that it’s something pertinent.
While we’re in the thick of this phase of the process it feels like no two days are alike. And there is no predictability either. Will it be a good day at school? Or will I get a call at some point telling me to come get him – because he’s too tired – or too irritable – to finish out the day?
It’s draining. And scary.
And it’s completely out of our control.
So while I’m grateful for the diversion of my work, I sometimes feel a bit disingenuous – know what I mean? Like, is it misleading to post about clogs and doughnuts, when I was falling apart just an hour prior?
But at the end of the day, this is my job – and just like anyone else, I’m responsible for it regardless of what’s going on personally. My job just happens to be more “visible” than most. And judging by the many notes I’ve received (some from complete strangers), it is clear that many of you sense what lies beneath the surface.
And for that I am supremely thankful.
We WILL get there. I know it. We have a wonderful, accessible doctor, and I have every confidence (most of the time, anyway) that we will be on the other side of this at some point.
Till then just know that I truly appreciate every kind note, text and call, and your amazing support of the work I’m doing here.