Miller Park Zoo

This past Saturday, I went to Bloomington, IL to have a day of fun at the zoo with other MPS families. It was a 6 hour road trip with Brooklyn, but I have to say, it was was a great drive! The families are wonderful. They meet a need in me that no one else can. They get it because they live it. Now, granted, all the families, with the exception of one, only have 1 child with MPS and have other healthy children. Now, that really doesn’t matter because they still understand living with a child with MPS, but, what they don’t hear ins “times 2” whenever I think of our future. In the moment, that doesn’t matter either, but, reflecting back….I see myself not relating to a degree to the challenges of having a “normal” child and raising them in the world of Sanfilippo. One of our friends daughters, who is almost 6, had a hard time being around some of the other kids and didn’t understand. I can’t imagine how hard it is to navigate Sanfilippo AND “normal”. You constantly have a foot in each world at the same time. To my friends-I don’t understand, but will do my best to try. I guess that is what we do, right? Try to support one another cause Sanfilippo is dark alone.