One of the wonderful traditions in my husband's family is a Christmas party where the majority of his mom's family gathers at a hall. They need to rent a hall because his mom is one of 13 children, so there's lots of aunts and uncles, more cousins and now more second cousins than most in attendance can name. All the little children tend to gravitate to the gymnasium, which I swear they barely heat in winter, to run and play.
Teddy loves the bleachers in the gym, climbing up and down them, making others sit next to him and generally spending a lot of his time there. That is great, until he notices the stage, which is supposedly off limits. Other children go on the stage, but we do our best to keep our children off to avoid getting into trouble, particularly Teddy. Once he notices the stage and how fun it appears to be, it's sometimes a physical struggle and tears to keep him off both sets of steps, one on either side of the stage.
This year, however, it became a game that was great fun for him and a pretty darn good speed workout for me. He'd take off for the stairs, and I'd dash past him and sit on the stairs. He'd start giggling and turn back toward the other side. I'd beeline past him, sit on the stairs and he'd keep giggling. We continued this for quite some time, with Teddy laughing so hard that he fell over ... twice.
For whatever reason, it was hilarious to him, and I couldn't help but laugh as he collapsed into giggles. We both had a great time instead of a great fight over whether he could go up the stairs, which made for a great afternoon (although I was rather tired by the end of the party).
It's hard not to attend these parties and think back to the first years with Teddy, where it was so hard because we couldn't stop comparing him to the other children his age (or younger) who were far ahead of him developmentally. Time has helped us to appreciate the joy in what he can do, which is an awful lot. This little boy was running, giggling and loving life. And I was able to be present (physically and mentally) to soak up the magic.
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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