Welcome back to the #GiGisBlog Beth Craver.  I think we can all agree that some days finding a silver lining can feel hard or even impossible, but we promise they are there! We love how Beth is sharing hers. Enjoy xo


I’m not sure you know, but these are unprecedented times. Luckily, parents of kids with special needs are experts in curve-balls. We hit them head-on, usually out of the park.

But, to unnecessarily harp on the metaphor, we occasionally strikeout. Our minds elsewhere, our bodies tired, our souls sad. This game has been especially tough; the opponent, formidable.

The days have been long and the battles furious; especially the ones with technology. Is it working? Where’s the link? How do I disable the volume? And then, when that’s all up and running, how to get Judah to sit and engage for longer than it took me to set the whole thing up?

What’s the balance with technology? Do I have the right YouTube to school work ratio? Is using the same device confusing him? Does anyone have an equation that translates to typical recommended screen time, plus extra hours home, times how hard they are driving me bananas? The answer is no. No one knows. Nobody knows anything and for a mama who rides the waves of validation, I’m crashing hard.

Wait….this blog supposed to be about silver linings. I’ll get there. I promise. But before the sky opens up and the sun comes out, we must acknowledge the storm. Am I right? So where was I? Oh, that’s right, no one knowing anything.

There was a time at the beginning of this pandemic where I constantly consulted the NDSS about COVID and Down syndrome. There isn’t a ton of definitive answers that I found. It was pretty much just a reinforced lesson about underlying health issues and how they could put our loved ones at risk. I’m not sure if Judah being on a ventilator at 18 days old with RSV puts him at risk? I’m not sure I want to send him to school or daycare or even go out to a restaurant? I’m not sure if that will hurt him more than help him? I’m not sure about his regression due to lack of in-person services and his unwillingness to bend even a little when it comes to online learning? I’m not sure I read enough to him? Play with him enough? Foster the skills he needs? I’m not sure I can do this half as good as the moms I see out there killing it? And I’m not sure if he sees the cracks in my foundation?

Silver lining time. Here’s what I know for sure. Comparing is completely unproductive (this is coming from my therapist, so it must be true) It does nothing but foster self-doubt and how is that even remotely helpful? So, I’m trusting myself more. I’m looking into Judah’s eyes for the answers. And guess what? They dance. Those delicious, baby-blue, almond shaped, beauties, waltz with happiness every day. Every time he jumps in the pool his eyes light up. They sparkle every time he asks to take his life jacket off and braves the deep end; trusting himself more every day. His eyes glimmer when he belly swings forever on his new freshly built playset. They sing when we hike on empty paths and he literally stops to smell the flowers. His eyes twinkle when he’s allowed to lie in our bed with his brothers and watch shows instead of the hard 8’oclock bedtime he was used to. They shine when he says a new word or memorizes a song from a show he’s gotten to watch more than he probably should. And his eyes gleam when he sees that plate full of fry dipping ketchup because we are pairing them with his favorite, grilled hot dogs for the second time that week. Judah’s eyes jump joyfully with every bit of new independence he’s gained from being in a: safe, happy, trusting, environment that encourages bravery and celebrates unique gifts. There are so many ways I could count the things that we are doing wrong during quarantine but why bother when his eyes are alive with everything we’re doing right?

 

Down syndrome joy

 

The crowd cheers loudest for the wins that come from spectacular home runs, but you can win a game from walks just the same. You can be the underdog and come back strong. You can strike out once at-bat and smash it over the fence the very next time.

But you can’t quit. You have to keep your head up, your eye on the ball, and constantly looking for silver linings.


Thank you, Beth! We want to hear about the silver linings you have found during this wildly different season.   Leave them in the comments or email us at syracuse@gigisplayhouse.org!

Program Spotlight that is guaranteed fun for the whole family!  GiGi’s Music! Click HERE and scroll down just a bit to find 32 OnDemand Music classes that will have you and your kiddos moving and grooving, on your schedule!  For our friends who are struggling with online programs, this is a great one to have on as it is all fun songs, drumming, and dancing!  If you find that your kiddo loves it there are also several opportunities to join in LIVE each week when you RSVP! Whatever works best for you.

 

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