Cronic joy

Do you ever feel like things just aren’t going your way? Or maybe a specific thing isn’t going your way? Maybe you’ve tried over and over again to get this thing going, and life just seems to get in the way.

We know that Noah is a smart guy, and we also know that he is a smart aleck. Definitely a dual threat. We’ve been looking for a way for Noah to show this his whole life. But when you struggle to use your mouth, and you struggle to use your hands, and you were born early this century when the technology just wasn’t “there,” well, what you’ve got is your winning personality. And he uses it well.

If you’ve read this blog at all, you might know that we have moved multiple times. I believe the count is seven if you don’t count moves within the same city. With one exception, they’ve all been out of state. Every time you move states, you have to re-apply for any services received- even though many of the programs are federal. Noah has had services a few times, but mostly we’ve been on our own. It can be easy to get down about it.

Noah doesn’t get down about too much, however, and it’s hard to be “down” when Noah is looking for fun every time you turn around. He will laugh if you drop something, break something, or fall down. One of his favorite things to laugh at – huge bumps in the road. Sometimes I drive through an extra parking lot with those huge bumps that make everyone slow down because Noah thinks it is so funny.

So we’ve been trying to get Noah a device to help him communicate for years. When he was much younger, the technology just wasn’t “there” for a guy like him as mentioned above. They were starting to have devices that used “eye gaze” where they tracked your eyes on a computer screen to make choices, but you had to look at the area for longer, and Noah didn’t have the head control back then to keep it up. It was too exhausting.

Fast forward about a decade, and the speech therapist at his school let me know that she thought Noah could use such a device now. The tech had really improved, and she wanted to try it. And he did use it, and he started getting the hang of it. So we went through the whole process to get one. Then my husband got a new job, and a week or so before the device was to be delivered, we moved out of state. So we started the process over in a new state, and it’s a long story for another day, but before we could finish, we moved again. Super frustrating.

So we started over one more time, and it went really well – and pretty quickly. We were so excited to be picking up his new device. We’ve been looking forward to it for weeks now ever since we got the date.

We have to drive to a clinic in Baltimore for the pickup, and I’ll be honest, it’s not my favorite drive. I’ve never been anywhere else that has this many potholes. And the wheelchair van is very low to the ground. I spend the last 10 minutes of the drive cringing as we make our way through these pockmarked streets knowing any minute something important is going to fall off the bottom of the van. Noah spends the last 10 minutes laughing. Is there anything better than someone that can find joy even in the bumps in the road?

Of course we hit another bump in the road with the recent blizzard – they had the audacity to call and cancel his appointment to pick up his device. Sigh. But it was just a little delay as we go to pick it up tomorrow. I’m so excited to hear all the funny things that Noah has to say. In the few times he has used the device at the clinic, he has the wonderful ability to take the few word choices they provide and turn it into something funny or silly.

So the next time you hit some bumps in the road, think of Noah, and look around. There is almost always some joy to be had, and while it won’t make the bumps go away – and the bumps still might tear your car up – it definitely makes it a little easier to take.