AJ's teacher sent us a picture today of an activity the class did where each student wrote his or her name, and the teacher then wrote what each child loved. My heart melted a bit when I read AJ's answer: playing with my brother and friends and legos.
Teddy may annoy the ever-living snot out of AJ some moments or days, but AJ still loves him fiercely. We heard today at Teddy's school conference that when Teddy walks by AJ's classroom, he instinctively knows that's where AJ is. Teddy stops to poke his head in to say hi to AJ. And then AJ's teacher said that AJ always smiles and waves at Teddy.
I love how much they love each other ... even when they both annoy the ever-living snot out of me.
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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