SED 009: Thanks and No Thanks - text version

Hi, this is Stronger Every Day. I'm Bo Bigelow. 

Four and a half years ago I quit my law job to be at home with my kids. Turns out our daughter Tess has special needs. She's different. And now, so is everything else.  

Just a warning, the following podcast has swearing in it. Swearing makes me feel better, so you're gonna hear it. 

This is episode number nine.  

Some people, I swear, they're put on this earth to thwart me. I talked about some of them in the last episode. 

Others, though, cross my path and are the opposite. Some are teachers, others just kind strangers, in line at the grocery store, or out on a public sidewalk.  They want to help. They think about our family. They reach out to Dana. They take the time to think about Tess and what would work for her.

On this week's show:  if you're not with me, you're against me. It's about finding the people with good juju, who want good things for you and your family. And cutting loose everyone who doesn't.   

Tess is a skier. She's been going to Maine adaptive skiing for two years now - they have a nifty rig all set up for her, and they bungee her ass into it and take her down the mountain. It's pretty awesome. 

Most of its awesomeness comes from the vibe, these physical and occupational therapists who volunteer to work with people with disabilities like Tess. 

And I meet some amazing parents there, while we're inside the lodge, at the window, watching our kids cruise down the slopes. 

Last time I met this woman, who'd had her twins very very premature. They were in the ICU for weeks, and ended up having some physical and cognitive disabilities. Both kids have been coming to Maine Adaptive for years. They've made crazy progress as skiers. This woman told me about someone who had helped them, early on in their journey, and referred to the helper as an angel, sent by God. 

I'd just met this lady, like ten minutes earlier. She hastened to assure me, hey I'm not religious, not at all. If I were to press her on the issue, she said, she doesn't really even believe there's a God. 

But she stuck to this idea that certain people are sent into your life, and your kids' lives, to help you. To make things easier. To save you from some dreadful situation that's totally messing with your shit.  

I gotta say, I hadn't thought about it that way before. But when I look at everything that's gone on for the past five years, I get it. 

Example. A few years ago, we had just learned that Tess has CVI, or cortical visual impairment. It means that even though her eyes are healthy, good rods and cones and all that, there's a disconnect between her eyes and the visual part of the brain. It's a processing problem. It means that she's drawn to bright lights and the color yellow, and sometimes back then she couldnt detect objects, even when they were right in front of her, right under her nose, on a table. Luckily, we'd learned that you can intervene. Get in there early and fire up some vision therapy, and a CVI kid can essentially be taught to process things visually. Their brains get better at it, and their ability to detect stuff can improve. We had a teacher of the visually impaired who was trained to do that kind of therapy and was supposed to work with Tess. Time is of the essence with this - gotta act fast. The more you can do early in a kid's life, the better. But the teacher kept no-showing. Fall goes on, we're getting into winter - no sign of her. I come to find out she doesn't like driving in the snow. Now, we live in the state of Maine. I mean, come on. It's pretty far north. If you don't like snow, there are a number of options in the south where you could safely get rid of the snow tires. But this isn't one of them. 

So every day that Tess isn't getting vision therapy, is another day where we've failed her. Where we could have intervened and helped her brain learn how to visually process her world, but instead we did nothing. 

And that teacher was not helping. And if you're not helping me, you're hurting me. Especially, especially if I've relied on you. Relied on your promise to help. And you left me hanging. So not cool.  

We got rid of her. We were upset. It was a dark time for our heroes. It seemed like Tess's vision would never get better, and we were doomed, and we'd just have to live with her CVI. 

And then somebody new came into our lives. When we least expected it. Her name was Andrea, and she started working wiht Tess. She busted her ass for us. She found a way to get us to meet THE expert in CVI, Dr. Christine Roman, who knows more about it than anyone else in the world. She made binders, and filled them with objects, glued onto pages, things that Tess would recognize by feel, and developed this whole communication system for us, so Tess could tell us when she wanted snack or water or something else. She found all this great stuff, and repurposed it to make tools and learning centers and light boxes and play areas for Tess, with each thing modified to make it useful for someone with low vision like Tess. She was always doing like outside reading and coming up with new ideas and brainstorming how we could solve problems in our house with Tess being uncomfortable or not knowing how to do something. When it was time for Tess to start going to school, Andrea even went to the new school and trained them on how to create the right lighting environment for Tess, so her vision would be optimized. She was basically like Tess's personal angel, in the vision department. We freakin love Andrea.  

Here's another example. 

Our car trips can kind of suck. Tess gets sick of the carseat, and starts howling, and god help you if you're still an hour or two from your destination. Punishing. 

Most of the time our voyages take us through western Massachusetts, and we tend to stop overnight at the house of my wife's sister Lauren Bell and her husband Jamie. Or as I refer to it, the House of Elrond. 

J'ever read the Hobbit? JRR Tolkien? If you haven't, quick summary of who Elrond is, and why he's so excellent:  Bilbo the hobbit and his friends, these dwarves, had just gotten their asses thoroughly kicked, and they're on this quest, and they're out of food and water, and hating everything, and they show up at Elrond's place, and he takes them them in, gives them shelter, feeds them, and they rest. After a few days of this, they feel like new men. 

And that's what happens at the Bells. Lauren scoops up angry Tess and gives us a break, plays with her and gets her to chill out. Full glasses of beer and wine are thrust into the hands of my wife and me, and we're told to put our feet up. We have conversations. Actual adult conversations with Lauren and Jamie, about elections and music and movies and ideas and art. Meanwhile, Dana's older cousins whisk him away and play with him - video games, legos, the language of the eight-year-old.  It's unreal. We change back into people. We relax. We love being there. It's like hanging out with Elrond. By the time we go to leave, all four of us hop in the car and we're in great moods, ready to take on the next leg of our trip. Yep, Lauren and Jamie are pretty much our travel angels.   

We're so grateful to the people around us who get Tess and get our family. Laura, the director of Tess's school. Dana's kindergarten teacher. His bus driver. Our friends the Davins. Our neighbors down the street. 

That ski mom, the one with the twins? She's right. We have to see those angels when they show up, man. We gotta thank em, and keep looking for other ones. And we gotta see when someone's not gonna help, cause they're too busy, or they have their own issues, or they just don't care. Whatever the reason, we have to see that, and 86 those people. Cut them out of our lives. It sounds cold, but with Tess we don't have a choice. We can't rely on somebody and then have them bail on us. Not an option.  

The coolest thing about meeting the ski mom? I talked to her for only about ten minutes. I never even got her name. But standing there at the window, I was able to look out while she pointed out her kids, a boy and a girl, both about twelve. She was with me when Tess got strapped into her rig and carried out to go skiing. She told me her son, like Tess, started coming to Maine Adaptive when he was four. And also like Tess, he had that same rig back then -- a slider on skis, with arm holds and stabilizers and straps and shit. And now this year, that kid can ski on his own. With supervision and everything, but he's not in any kind of rig. He's just skiing. 

So in a way, it was a lucky thing that I got to meet his mom and hear about how far he had come in the past eight years. I may never see her or that kid again. But seeing into what could be Tess's future as a skier? I'm really glad that family was there that day. 

That's gonna do it for me.  I'll be back next week. 

If you're in Maine and want to make podcasts but aren't sure how to get started, it's your lucky day. There's a meetup group for you. Find us on Twitter - hashtag M.E.podcasters, all one word.  Hashtag ME like Maine, podcasters. On twitter.

Also, check out adaptive skiing if you know someone with disabilities who might like to hit the slopes.  I'll put a link in the show notes to Maine Adaptive, where Tess goes. They're awesome. 

Do you know how to get to the show notes? If you're listening on iTunes on your phone, click that little lowercase i next to each episode, and voila, there they are. They're also on our website,  

Thanks to Tony Magrogan, audio consultant extraordinaire.

Also to Will Sakran, who wrote and performed "Innergroove," which is our closing theme.

And to Brad Peirce for co-writing and playing guitar on our opening theme.  

Thanks for listening, and see you next time.   

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