Picking out the stitches and starting over.
I’m drafting this as I sit snotty and phlegmy on the couch while Davy watches Twirlywoos for the fourth day in a row. I considered putting off this week‘s Substack, but I finished the book series I was binge reading and my mind needs something to anchor on.
Our fevers have passed, and the COVID tests are negative, but my cough has moved into my chest and I’m not sure how long it’s going to linger.
This week has been rough, and not just because of the sickness.
I don’t even know where to begin.
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Davy started back to Montessori school last week. As you know they asked me to present about neurodiversity and have been very open to learning how they can support him.
But even with the accommodations offered to us, it wasn’t enough.
What we really needed was an extra year in the Toddler class (which is set up for kids with emerging language skills). But Arkansas laws won’t allow that.
Meanwhile, our whole family fell sick.
After being well for the entire summer.
We are finally realizing that we’re an immunocompromised family and what knocks out most kids for a day or two will make our whole family sick for 2-4 weeks. We’ve been sick for a huge amount of the last two years.
This was the final straw and a huge factor in the overall risk / reward equation.
For now we’ve decided to keep Davy home where he can be in an environment that fits his needs with people that can understand his communication.
And I’ve spent the last week picking out stitches so I can start over with stronger thread.
The work of advocacy that preceded this pushed me far beyond my limits. I was hemorraging energy, masking my own needs, and sick with anxiety that made me physically nauseas.
I have so much respect and admiration for those of you who are doing ongoing advocacy in schools. The work is HARD, and thankless.
Thank you for advocating for your kids. Remember to advocate for yourself as well. Every time we question the system and ask for what we need we are making ripples that will change the world.
The moment we made a decision to step away I knew it was right.
I’m feeling at peace.
It may take another week or so to fight off these sinus infections, but after that we’ll figure it out.
Maybe next week we’ll go out to the studio together, but for now I’ll keep hiding Benadryl in peanut butter sandwiches and wiping snotty noses.
Solidarity to all the sick mamas,
Sarah
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