Monday, November 25, 2019

The joy that's right there for you, if only you'll accept it

Max is a happy person. Everyone comments about it—neighbors, doctors, strangers at the mall. Last Friday night, as I watched Max bliss out at a show, I got caught up in his joy. During the drive home, I wished I had been able to relish it more when he was little.

Back then, when people commented "He's so happy!" I felt as if they were basically saying that joy was all that Max had going for him, although I knew my boy had so much more to offer the world and I ached for others to see it. I felt as if there was an implied message about his cerebral palsy, even if there wasn't: Despite the tragic fact that he has a disability, he still manages to be happy! I felt like people were ignoring the fact that even if Max had physical and cognitive challenges, in many ways he was a kid like any other, one who had plenty of grumpy moments.

Max's giggles and smiles lifted me, but inevitably the worries seeped right back in. Oh, how anxious I was. I'd always been a pretty upbeat, optimistic person but the bleak outlook the NICU doctors had for Max haunted me. At times I was a total mess of a mom, even if all everyone else saw was a hyper-functioning woman who got her child therapies up the wazoo, snagged appointments at specialists and tried cutting-edge treatments like stem cell therapy. I couldn't fully appreciate the cheerful tot in front of my eyes because I was always peering anxiously into the future and wondering what it held for him.

Developing as a parent meant that I grew less sensitive to comments, learned to take things day by day, grew to appreciate Max's joy for what it was: joy. Max wasn't happy "in spite" of his cerebral palsy. Max wasn't happy because he was "simple-minded," as someone once suggested. Max was happy because of his Max-ness. It's an amazing trait to be able to find happiness in things big and small. Like his squeals all throughout week when he spoke about seeing Frozen 2. Or how gleeful he looks when he checks his Apple watch to see how warm it is in Los Angeles, where he'd someday like to live. I have the perspective now to view this bliss as a gift, not a side effect of his lack of development. And because Max can now communicate and make conversation, whether on his iPad or through words. people understand that that there is a lot happening behind that grin of his.

Last Friday, Max and I had a date night at the Liberty Science Center Planetarium to enjoy their new Extreme action event, complete with laser light tag and slime making. At Max's request, I bought tickets to a Katy Perry laser light show. I wasn't sure if it might be too intense for him, but figured we'd try it. We sat way up at the top of the theater. The lights dimmed. "Roar" came on. "I like this song!" Max exclaimed. He watched the laser art bounce around us, fascinated. Friday Night played, which always puts me in a good mood.

Max's face lit up when Firework came on—he absolutely loves that song. He sat there singing along to it, something I'd never seen before, the lights glowing up his face. I sat there watching him, his joy lighting up my heart so overwhelmingly that I choked up.

'Cause baby, you're a firework 
Come on, show 'em what you're worth
Make 'em go "Ah, ah, ah"
As you shoot across the sky

Max is a person who is lucky enough to find intense joy in so many things. And I am his lucky mom, at a place in my life when I can appreciate his joy for what it is. After a hurricane comes the rainbow.

I sat in the vast blackness of the planetarium that night, feeling grateful for my happy boy and the life we have together.

Baby, you're a firework
Come on, let your colors burst
Make 'em go, "Ah, ah, ah"
You're gonna leave 'em all in awe, awe, awe

1 comment:

  1. Katy Perry (and a pretty girl) got David singing out loud too. Started a whole ripple effect -
    I think it changed his life /speech trajectory. 👍


Thanks for sharing!

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