February 14, 2017 mcfadyena


Short but sweet. Y’all might love this given my usual essay style blogs. 😉
One day oldTrey was diagnosed 11-years ago today. I was scared of moms like me when Trey was first diagnosed- moms who knew the insides and outsides of MPS. Hearing moms talk about seizures and g-tubes and cognitive delay made me want to throw up and hide. I didn’t want this life. I wanted normal. I wanted ignorance. But now that I’m in it, it’s more full of love and openness and friendship than I ever could have imagined. Scary and sad it is, but that’s life. The “before” me would have learned that eventually. So here it is. D-Day. A day that changed my life. And although meaningful and significant, it is no longer a day that feels like the end of the world. It’s a day where I got to drive Trey to a school he loves. A day that I get to pick him of from a school he loves. A day that I get to talk to him and hug him and tonight, give him kisses as high as he can count- through giggles. A day like that in rare disease world, I would take forever.


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