On school and support

Every year since Namine was four, we get these memories that show up in our “On This Day” Facebook feed. The memory in question is about us pulling her out of school.

At the start of each new school year (and every time these memories pop up), we still think about putting Namine back into a brick-and-mortar school. She’s been in a virtual school since Kindergarten, and she continues to excel. Contrast that to her PreK experiences, and there’s no contest between what we’d rather choose.

In what turned out to be the final IEP meeting before we eventually pulled Namine out of school, teachers lied, made excuses, and outright refused to do what was best for her.

But Namine is now in third grade doing fourth grade work, and her teacher in the RVA, with whom she speaks in weekly video calls, is pleased with her progress. When Namine was in PreK, her teacher had little hope for her at all. (Her teacher there also taught her to spell her name wrong, so take that how you will.)

Jessica and I have always been Namine’s strongest and loudest advocates — as any parent should be for their child — but we, thankfully, have not had to fight for her alone. Namine’s uncaring and apathetic teachers in the public school system have been, for the most part, the exception and not the rule.

We have had amazing doctors, nurses, and nurse practitioners at the Children’s Hospital of Wisconsin, not the least of whom are doctors Gordon (now retired, and we are all richer for having known him), Mitchell, Black, LoGiudice (without whom Namine would have lost her foot), Denny, Block, Zengwill, and Camarda (the last two of whom are no longer Namine’s doctors); therapists both past and present; and many other amazing individuals like coaches, dance instructors, and all our friends and family who have given their support, expertise, and personal sacrifice to make Namine’s life possible.

I hate the term “support system.” It’s so impersonal. But that is what we’ve had in not only our friends and family, but also Children’s Hospital of Wisconsin, HealthReach/KidReach Rehabilitation, Home Care Medical, Knueppel Healthcare, St. Paul’s Church, WASA, YMCA Miracle League, and Anita’s Dance Center. We thank you all from the bottom of our hearts.

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