Part of the reason Kelly and Liv joined us was so we could go to Brookfield Zoo together. Jake and Finley met us down there and we were able to walk around and attend the event sponsored by Children’s Memorial. I had a great time at the zoo but it really got hot that day and the kids were done by 1PM. The event was disappointing.
I love that they get us all together, but time and time again, it is the same information. We do not need to know what MPS is…we are good and well familiar with it. I can tell you what I want….A chance to talk with other Sanfilippo parents, information on daily living, how to parent a child with MPS, activities I can do that will increase learning and be fun, a chance to meet medical equipment companies and test out products, information on writing medical letters of necessity, how to advocate for my children in the schools, training for caregivers and medical staff and case managers working with my children, and childcare so I can participate.
I think it is ridiculous that they offer these MPS trainings and don’t think about accommodating families. The last event was downtown Chicago in a non-child-friendly place with no changing tables and stairs to get into the event. The Zoo was better, but still, same info and no childcare. We lasted through lunch, then Jut and Jake and another family spent the rest of the time chasing our children at the park. I would love to host my own event…and maybe I will! I will say that I am thankful that there are even events out there for us, and the biggest gift is the feeling of not being alone in this.
When we came home, we headed over to Stephanie Habel’s for her 8th grade graduation. She and her family watch the kids a lot and are good friends of ours. I am so excited she is a high school student now so I can see her on Sundays! Way to go, Steph, you’re in high school now!
