While This Guitar Gently Weeps

When you have a child with disabilities, you live your life in two places, Wonderland and Sadland. Wonderland is where I live when I’m with Audrey and she just giggles and laughs all the time.  Sadland is where I think about her disabilities and what could have been.  Sadland is also where the Dallas Cowboys play their playoff games.

After we got Audrey’s diagnosis, I spent most of my time in Sadland.  I kept thinking about how she was going to struggle with everyday activities and remembering Michelle’s first words after the doctors told us she had CHARGE Syndrome, “This isn’t what I wanted for her.”

As I’ve spent more time with Audrey and watched her amaze me with what she has accomplished, the ratio of time spent between Wonderland and Sadland has shifted. I spend the vast majority of my time in Wonderland now, but can’t seem to avoid those occasional trips to Sadland.

Wonderland is great.  When I’m there, Audrey lifts my spirits and warms my heart with simple actions like voluntarily getting down off the couch, grabbing her walker, and taking a few laps around the house. At one point, we weren’t sure if she would ever walk, so seeing her scoot around the house gets me more pumped up than watching the training montage from Rocky IV.

Sometimes it’s simpler than that. Watching Audrey shove forkfuls of scrambled eggs into her mouth until her cheeks puff out makes me smile every time.  Watching her eat brings me back to the vision of a desperate father sitting on a park bench outside of Cook’s Children’s Medical Center waiting on the results of Audrey’s swallow study. Just imagine waiting on the results of a test to see if your child would ever be able to swallow.

I think about how I celebrate the fact that she can walk an entire lap around the Galleria with her walker. That’s Wonderland.  Sadland is where I realize that I will never celebrate her running at a track meet.

Maybe every parent has the same thoughts about their children.  There’s a delicate balance between being completely happy with where they are and wanting more for them.

Whenever I put Audrey down in the middle of the girls’ bedroom, I like to watch and see which toy acts like a magnet and draws her in. I don’t have to watch the scene play out anymore because it’s the same toy every time – the guitar.

It doesn’t matter where the guitar is relative to where I set her down.  She will crawl over every other toy to get to the guitar, pick it up, and place it in her left-hand alignment just like Jimi Hendrix and her much less accomplished southpaw guitar-playing father. Then, she just strums away with a grin on her face.

Why does she love the guitar so much?  We still don’t know what or if she can hear. Does she hear the notes?  Does she just like the feel of the vibration of the strings? Or does she just know how cool she looks holding a guitar?

In Wonderland, I’m just happy seeing the smile on her face and knowing that she is happy in the moment.  Sometimes I look into the future and see Audrey playing in a band. As much as she has blown me away with what she has accomplished so far, I wouldn’t put it past her to be the first CHARGE Syndrome, deaf lead guitar player in a band.

But as I watch her strum the guitar, I find myself getting sad. I think maybe she could’ve been a great musician if she didn’t have her disability. And then, my mind keeps wandering down that path deeper into Sadland as I think about all the possibilities she won’t have because of her condition.

I think every parent wants their child to have a better life than they did.  It’s hard when that dream is taken away on day one.  I shouldn’t think that way because it’s not fair to Audrey.  She still might accomplish more than I ever did.  Heck, you could say she already has in some ways.

If you are ever looking for an exhausting and worthless activity, I highly recommend regretting something that cannot change. Just ask any parent of a child with disabilities. Or ask a Dallas Cowboys fan.

I don’t know why I find myself wandering off into Sadland.  Absolutely nothing positive comes from my trips there.  Fortunately, my visits don’t last very long anymore.  because every time I wander into that dreaded territory, I feel Audrey’s hands grab me and pull me back into Wonderland.  No matter how deeply I venture into Sadland, she always pulls me out.  She may be small, but her grip is unbelievably strong.