Yesterday was the first day AJ and Teddy rode the school bus home together. AJ's only complaint was that some other child sat by Teddy on the ride home.
"Teddy's my brother."
This was AJ's logic on why only he should be allowed to sit next to Teddy.
"Maybe he made a new friend."
This was my attempt to provide some rationale on why it would be OK the bus driver put someone else in the seat next to Teddy.
"No, Teddy's my best brother I ever have."
This was me stopped in my tracks by the fierce love and protectiveness and bond AJ has with Teddy. I hope the only thing that changes in that statement in the years to come is perhaps that it becomes a bit more gramatically correct.
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.
This is so sweet!
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