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.All that to say, thank you to all the families there, for sharing and being so welcoming. We loved being there and meeting you. Thank you Melissa and family. I loved our time together. Kelly-always you are my comfort. Tara and family, what a joy to finally meet the entire crew. And especially Val-Thank YOU for working so hard and doing this for us! Your entire family is so wonderful. Thank you! You do Sanfilippo with grace and a smile and it is so refreshing! And all the other families, thank you again.
