I took AJ for his flu shot today, which he was dreading. As we walked into the room with the nurse, he announced that flu shots are "his second least favorite thing." That prompted me to ask what his least favorite thing was, and the nurse began guessing. She guessed cleaning toilets, laundry, dishes, and vacuuming before AJ interjected, "It's my brother having seizures."
Well, then, yep, that's my least favorite thing as well. That stopped both the nurse and me in our tracks as we agreed that's definitely not a good thing and that the flu shot isn't as bad as that.
I'm often amazed at what pops out of his mouth and how insightful and connected to his brother he is. I was also amazed that the nurse asked if he wanted to pick out a sticker for him and Teddy. I did a doubletake and asked if AJ had said his brother's name was Teddy or how she knew Teddy. I might have inquired, "Does Teddy's reputation proceed him?" She laughed and said that she remembers kids' names and faces from all our visits, and shared that Teddy and AJ were some of her first patients. She then shared that she's loved watching Teddy grow through the years, learning to stand and then walk and that his progress has been amazing.
It was one of those little things where I never quite realized how much she knows and cares about our children, and it was worth the tears for the flu shot.
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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