Saturday, January 16, 2016

Meanwhile, Sky....

The siege of 2016 continues as we wait for Tuesday to come and for Ren to have his follow-up appointment with the spine surgeon. Of course, it only feels like everything has ground to a halt. For the past two weeks, life as been full-steam ahead with work and school even if we are all still spending more time than usual cooped up together. 

All this togetherness continues to teach me stuff. A few days ago, I posted this to the Facebook page:

Something amazing happened last night. Sky barged into our room and interrupted a conversation Ren and I were having (happens all. the. time.)
Me: Wait. 
Sky: Mom, Mom, Mom, Mom. 
Me: (holds hand up to remind him he has to wait) 
Sky: (fidgeting, dying to talk, but still waiting) 
Me: (stopping my conversation because he's too distracting even if he is technically waiting) What do you want, Honey? 
Sky: Ok. First, you know when frogs are babies...? 
Me (interrupting him, exasperated): Sky, do you really need to interrupt the conversation I'm trying to have with Daddy to talk about frogs right now? (What the heck?!?! He was playing cars with Stow when I left him five minutes ago. How in the world did he get on frogs so quickly?) 
Sky (pauses, then says half to himself under his breath): Okay, that one I can save for later. (Then, looks at me, and says): Second, can we watch the fourth Harry Potter movie tonight? 
Me: (dumbfounded)
I mean, sure, he didn't need to interrupt our conversation to ask about watching a movie, either, but HE WAS ABLE TO REFRAIN FROM TELLING ME SOMETHING DESPITE THE FACT HE HAD ALREADY STARTED TO TELL ME AND HE CLEARLY WANTED TO TELL ME.

He's 11. That's the first time this has ever happened.

At the risk of going on too long in a Facebook post, I didn't describe the singing of the heavenly hosts that echoed through my head in that moment when Sky actually restrained himself. I also didn't go into excruciating detail about all the times he starts any conversation as soon as he steps into the room never taking a moment to assess whether people there are busy or talking or sleeping. He is getting better at things we've been working on, and we do have a long way to go. But, I wrote that post because I realized that with the chaos of parenting three kids while also nursing a spouse through his fifth spine surgery, I sometimes forget to celebrate these moments that highlight how Sky is slowly but surely coming into his own.

Sky (b. 2004 -   )
"Untitled," 2015
Mixed media
Courtesy of the artist (found under the seat of the car. And, for what it's worth, the egg fell from the carton....)

A few days before this post, as I wrote an e-mail to a mom with a recently diagnosed three year-old, I realized that it's getting harder and harder to remember just how much we didn't know five years ago when Sky was first diagnosed. Don't get me wrong. It can still be a challenge to manage some of the sensory and social skill challenges that are a part of our everyday lives. But, as I was explaining to this mom about OT, PT, speech, ABA, IEPs, and the benefits some folks experience with dietary changes, I suddenly felt very grateful for just how far we've come and for all the many people who've walked with us on this journey.

I ended my e-mail with this reminder. It's something I've told myself a lot over the past five years, but I'm not sure I really believed my own advice until recently: 

I know this is all probably overwhelming, but my biggest advice is this: Don't panic. Take it one step at a time. Gradually implement therapies and/or dietary changes as you are able to handle them. Never feel bad about not doing enough soon enough. You'll keep learning and figuring things out as you go. Do what you can when you can. You are your child's biggest and most important advocate. That can feel like a lot of pressure, but as long as you are taking care of yourself and doing what you can as you can, you will get there.

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