Lois

You might remember me posting about Lois in October. She had leukemia. She kicked it. And then it relapsed. Lois doesn't have leukemia anymore. Lois died yesterday, peacefully at home. She was just three years old.

It's difficult to explain to those outside the Down syndrome community that when a child with Down syndrome dies, we feel it at a personal level, even if we didn't know the child in real life. Maybe that's because, as parents, we exert a lot of energy advocating for our kids. Yes, we all do that for our kids, whether or not they have Down syndrome. Maybe it's because our children with Down syndrome are just a little more "vulnerable" than average. Maybe it's because we have a pretty good idea they are going to experience discrimination and bullying in their childhood and beyond. Maybe it's because we KNOW those things and we are passionate to try to CHANGE those things. Maybe it's because we spend so much time helping them reach milestones that typical kids reach without much effort.

I feel intense sadness over Lois' passing. I guess it's because it's my worst nightmare for Raymond. Rest in peace, sweet little girl. Enjoy your snuggles in Jesus' lap. I can't imagine the depth of sadness your mommy feels because you're not sitting in HER lap today.