Today was the last day of the 2019-2020 school year. I'm already ready for the kids to be back in school. Notice that I specifically said in school ... as in attending in person. Yet I know that in-person school this fall is not guaranteed and that even if it happens, we'll still be spending a lot of quality time with our children because every sniffle and sneeze will require them to be home instead of spreading any type of illness (or allergies, which can't be spread) to others. No matter what happens, it'll look different than our typical routines.
But today was Teddy's last day as a first grader. He saw his teacher and a few of his team members on a virtual meeting yesterday, which ended with us signing off before he stole my phone and ended without warning. Oh my, his sitter who normally juggles these meetings (and his virtual therapy) deserves props. It's not easy to have technology that Teddy can't control and swipe, much less to get him to follow along.
I think back to last year at his kindergarten "graduation" and what a special time that was for him and us as parents. (Oddly, I wore the same exact shirt today that I wore on the last day of school last year.) To see him included and participating with all the other kids, and so proud to be there with his friends, was such a special day. Honestly, most other last days of school would feel lackluster compared to that.
Today felt like any other day of the last couple months, juggling work and children. The only exception was the required trip at the specific time to do a no-contact pickup of Teddy's school supplies and belongings. He got to see his para who's worked with him for 2 years, his principal, his school nurse he visits daily and another of his paras while picking up his supplies. We rolled down windows, showed off his toothless grin and cherished the love from those who know him. He was most excited to see Miss Joyce, whose worked with him for two years and who he used to see at the grocery store because she works there as well. I imagine she still works there ... he just hasn't been to a grocery store since the first week of March. (Neither have I.)
It's so weird to have the last days of school end like this, but it's also good to see Teddy excited to see his people and his school. He's always loved school (just hated the bus ride the first year) because he loves people. We know he'll get to experience that again and that we just need to stay safe for now.
This is our family's journey with the rare PIGN genetic disorder Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome 1. When our son was diagnosed in November 2015, we were told he was the 15th documented case in the world. We've discovered more affected individuals since, but it's still an extremely rare and unknown condition since its discovery in 2011. Our hope is to create awareness of the disorder and foster a sense of community among those affected by the disorder.
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