Tonight our home was full of friends made through myTEAM Triumph (MTT) to celebrate the end of the 2019 running season. For those who follow the blog, we got connected with MTT right when Teddy turned 3. It's a group that pairs able-bodied athletes with individuals with disabilities to give them the opportunity to participate in athletic events, most commonly runs although duathlons and triathlons aren't out of the question.
The group is so accepting and welcoming of all individuals and their families. We look forward to the start of training runs each year and realize when we attend the first one how much we missed it through the winter months. The season typically wraps up in early October, so we hosted a gathering to enjoy everyone's company again.
We had 4 captains with different personalities, abilities and disabilities, along with their families and a few of our regular angels and crew members. We had an abundance of food, but more importantly smiles, laughter and conversation. One of the angels brought a box of toys to share, so everyone had fun playing with "new" toys and even got to keep some of the toys.
This group is such a safe space for us, a place where Teddy is wholeheartedly accepted. He can grab anyone's hand and attempt to convince them to do anything, including climb into rather small waffle block creations for a grown adult. And they will. We all look out for each other's children, so we all get a chance to converse.
Heck, I even found someone to hang out with our boys for a couple hours Thursday to cover a gap since Dave will be out of town for work while I had a running event planned. And these are people who I'd trust because they have either raised children with significant needs and/or willingly spend their time every week volunteering with our Captains. They're solidly good people, and it is such a blessing to be a part of this organization.
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.
Saturday, November 23, 2019
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