Thursday, June 19, 2014

The Story I Want To Share

We can tell within seconds.

Amid a conversation about Jack, a confused look crosses a face. Their eyes glaze over. Sometimes they stop listening.

They feel uncomfortable and we can see them wanting to flee the topic. They don't want to hear anything outside the "Jack is doing so great!" genre. So we tailor our explanations.

The reality of special needs life is that many just won't get it and certainly, some won't want to hear about it.

Even though we have been writing about our life with Jack for over five years now, there are still people in our community that don't know much about him. Maybe they heard in passing that he was born premature. Or that he's had some surgeries. But when we bring Jack up in conversation, how much do they really understand? How much do they want to understand?

Unless someone has followed along with us on this journey or they have their own child, family member or friend with significant special or medical needs, then their access to that well of knowledge may be pretty slim.

For sure my knowledge base was small before having Jack. There were a few individuals with special needs at church growing up and a couple at my school. That was it. I know it's a whole lot to ask someone to "get it" when their own life experience is limited. But ask any parent with a kid like Jack. You can quickly tell if someone cares, no matter how much they do or don't know. In fact, it is often the ones who don't demand a million answers to what makes Jack so unique that act as a balm to our soul. The ones who just let Jack be Jack. Those are my favorite people.

We had an encounter with one of our neighbors recently. Jack does not like to stop anywhere along our walk route. Well, Neighbor met up with us as we were walking by and wanted to chat. In doing so, Neighbor got quite the eyeful and earful of Jack being Jack. He was the Jack who didn't want to stop, without the ability or words to express it. Within seconds, I could tell that Neighbor understood. I quickly got a knowing, friendly look. I did not get the confused look.

Friends, there is nothing sweeter than the "I get it" look.

This is one of the main reasons I continue to write about Jack. No, I don't tell you every, single thing about him. I don't revel in talking about all his "issues". I don't expect every person we encounter to be a blog follower or to understand the intricate details about all his medical diagnoses. And I certainly don't use Jack to try and teach the world a lesson. In my own way, I am just trying to make sense of this special needs life. I connect with other parents. And yeah, maybe that will in turn make this life with Jack not so foreign to the people we encounter.

The more people who get it is a good thing. Long gone are the days when individuals with disability are hidden or defined solely by whatever box they are placed in. That is why I write about Jack. Just when we think we have him figured out, he surprises us with his amazing willpower and his stinkin' funny sense of humor. I want to tell you about Jack and his sun dance. Boy loves the sun. That is the story I want to share.

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1 comment:

Beverly said...

I love seeing Jack's smile! So glad you share.