Day 29: No, it's not easy.
Apparently, the nice Monday we had was just a precursor to a terrible Wednesday. My Royals chose tonight of all nights to forget how to hit the ball. Why on earth does that have to happen in the Seventh Game of the World Series? Grr!! But still, a really great year, and with no Play-Offs since 85, I'll take it.
We spent the morning at the Park, a beautiful morning, Bradley's favorite park...and by the time we left he was finally willing to cross the bouncy bridge but still refused to try any of the slides. Not sure when this happened, but somewhere in the last few months my kiddo has determined that slides are evil and should be avoided at all costs...oh wait, they are kind of really fun, but they should only be braved when wrapped securely around a parent or a sister. The more awkward the descent the better and definitely cause for great celebration. (I may never walk straight again!)
Somewhere in the middle of our time there, a ton of kids showed up. Most were toddlers that came with some stroller class with their moms. All these adorable little year old kids, all of them walking, most of them talking. The ones that weren't talking just kept eye-balling me. You know that look, they hide behind a pole and then peek around at you. Like an Idiot, I say "Boo!" Thinking we're playing some game...wrong...the kid just stared at me like I had two heads or something. At that moment I was wishing I did, that way I had someone to say "Boo!" back at me. Anyway, glared at judging me girl and went off to find Bradley, he'll say Boo to me.
So I watched him walk back and forth and back and forth and back again. At one point he was sitting next to another little boy named Max. They sat side by side for a little while then Max was up and gone and Bradley was left behind again. None of the other kids were interested in stopping near him, most don't slow down to see him. And it was hard to watch in some ways. All those kids talking, while I am trying to get his attention for him to see my hands. All those kids stopping to talk to me, or to eyeball me as judgy girl did; but he doesn't want to interact with them or say Hi to their Moms, or Dads. He's off in his own world and sometimes I'm not even sure I'm invited into it.
Days where I watch him get left behind, remind me of how he is different from other kids. How different our family is from others. Most days I don't see what we might be missing...some days I get a glimpse of what it would be like if he were better on his feet and more verbal. And though that would be awesome, it's just not the world we were given. Right now our world is frustration as we work to control pain and improve sign understanding and delivery. Hopefully, tomorrow we get better control of the pain and maybe some of his frustration will ease because he won't be trying to sign through the pain, or understand me while he's in pain.
I'm trying not to put too much pressure on this surgery. I know the potentials behind these tubes, but I don't know if they can return the smiles I used to get all the time. But if we can fix the ears and he stays cranky, then I know we can change his Anti-seizure medication because it is causing the bulk of the problems. Right now we just don't know.
So for an Inclusion day, today was a bust. Awareness...yeah I suppose, he was in the midst of a bunch of kids and moms. Acceptance? Well, that's always the hardest one now isn't it? Don't know that he was or wasn't accepted. With little bitty kids, they are more interested in where the next slide or mud pie is coming in to play; no one ran from him or to him, considering the ages that's the norm. I'm not sure I was Accepted. I wasn't in their little class, I wasn't a new mom...so I didn't have a place in that playground dynamic either. Mostly, it just felt like another day chugging along up the side of the Wheel of Fortune, wondering if there is any possible way we might be pulling out of the mud on the bottom and reaching up towards the top and a period of joy, peace and prosperity.
That would just be a really nice change.
Night All!
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