Friday, February 27, 2015

The D Word


Actually, it's a Double-D word: Developmental Delay.

As I do in so many of my posts these days, here I am, attempting to tackle one of the many demons we face. By we I mean Lehr and I, but these demons are faced by oh so many other families dealing with special needs. In fact, they could be faced by any parents. When I take a step back from it all, I'm often very aware at how the stuff we deal with in regards to Ruby parallels the stuff we deal with for Maddux and Eli too.

Right out of the gate we were traumatized by publications and web-searches that spoke of the many developmental delays we should expect for Ruby. This was before I had a clue or a hope, so I took much of it as gospel. She will be a late walker. She will struggle to talk, if at all. She will struggle to keep up with her peers.
Because this was all fact to me, I started looking for those delays immediately. Even before we started physical therapy. I researched until all hours of the night, searching desperately to find the latest, greatest technique or strategy or tool to help her close in on that gap. I watched Ruby like a hawk in all things, analyzing her every move and sound, over-processing what it did or didn't mean about her ability to progress.
Most days I would gather enough evidence from this constant observation to convince myself that on that day, no one could tell she had Down syndrome - no one would see a delay - because she was doing everything any other baby her age was doing. The next morning I would wake up and repeat several home therapy sessions with her again, determined to achieve the same 'success' again.
Months passed and Ruby continued to work as hard as we pushed her. She met goal after goal, and we had more of those 'most days'. But every once in a while I'd meet a baby close to her in age that would surpass her abilities and it would all come crashing down. I'd dig deeper into the research library, buy another book, resolve to work harder the next day, all in the name of closing that delay gap between Ruby and other kids. And because she's a rockstar, Ruby rose to the challenge and mastered skill after skill, allowing me to have 'most days'.
But as we approached her first birthday, the gap couldn't be ignored. While Ruby was killing it at Physical Therapy, she still was not crawling, and her peers were starting to take their first steps. It became all too easy for me to surround myself with therapists and kids in the Down syndrome community that cheered Ruby on and reveled in her successes the way I did. But when I stepped outside of that world, reality pulled an ice bucket challenge on me. All of that hard work and success would flee from my mind and all I could see was the delay.
The thing is, I knew this was going to happen. As Ruby ages, the gap between her and her peers will likely grow exponentially bigger. But even as I knew that in my mind, seeing it was hard. Some days I could barely stand to be around other babies Ruby's age because everything they did reminded me of what Ruby wasn't doing. Sometimes I would even tell myself that it was because I wasn't working hard enough, even though I couldn't imagine how we could possibly do more. We chased that delay - that gap - all day, every day. But we couldn't outrun it.
I know this sounds all Debbie Downer and negative, like I locked myself in the bathroom and drank during nap time when I had those bad days. It wasn't was much more subtle. If I'm honest, I'd have to say it IS more subtle. It's just that tiny voice that creeps into our 'Yay for Down syndrome' world that we live in. (And we are joyful in that world.) This demon hasn't gone away - it still finds me sometimes. Even though I KNOW in my heart that Ruby's worth is not measured in her physical achievements. Even though I KNOW Ruby is who Ruby is supposed to be. Even though I KNOW Ruby will do what her peers are doing, just in her own time. Even though I KNOW the amazing joy of celebrating every single skill mastered, no matter how small. Even though I KNOW Ruby's story will play out the way it's supposed to.
But I still hate those D words.

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