I've been planning Teddy's Halloween costume for more than a year. Last year, we used his Kimba Kruze chair to get him around the neighborhood for trick-or-treating since walking required so much effort for him. He was cool enough as a hot air balloon, but I said that I wanted to make him into a tornado when he could walk.
He's such a destructive force of nature that it's only fitting. (My other idea I got this year was a pinball in a pinball machine after watching him bounce off the walls, doors and people at AJ's school's pumpkin walk last night.) Since it's so fitting, I remembered my idea this year and put together his costume in less than an hour.
The irony of the fact that he'll likely destroy this costume the first time he wears it is not lost on me ... despite the oodles of hot glue holding it together and cars strategically placed where he wouldn't notice them immediately.
He's a force of nature to be reckoned with ... that's for sure. I'm just hoping this costume holds up through the afternoon at school that he can wear it again trick-or-treating in the evening without needing to do too much repair.
Now, the question is whether I am ambitious enough to go as Dorothy.
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.
Sunday, October 15, 2017
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