Missing Out

I know I sometimes rush to judgement about certain things, but I have a hard time not doing that, especially when it comes to kids with PIDD.

As an adult with CVID, I take a lot of calculated risks in order to live a full life and do the things I want to do. It fills me with sadness when parents of CVID kids limit the fairly innocuous things they do. For example, someone in an online support forum decided not to let their child in the bouncy house because she didn't know how often they clean it. The jumpy house isn't the problem, in my mind, the other kids inside would be. With handwashing and everything the kid will be fine. I understand that parents feel the need to be protective, but to shut your child inside and not allow them to experience the world is a huge mistake.

In some respects, knowing my mom, I'm glad I wasn't diagnosed until later. Mom still has never tried to dissuade me from doing the things I want to do. I missed my grandmother's last 2 Christmases because of different active germs in my parents' house, so it's not like I'm cavalier about the risks. I didn't want C-Diff or Shingles because those can last a very long time in patients like me and have devastating consequences. If there was some sort of MRSA scare or something, maybe I'd be understanding, but to just tell a child "you have this thing, therefore you can't have fun" is just cruel to me. I believe it will lead to further resentment both of the illness and the parents, and will not teach the child that it's ok to live.

They don't keep CVID patients in a bubble and never have. I don't think there's a real reward to living that way, especially for children. Just teach them to wash their hands and to not touch their faces in public, and let the Ig replacement do its work.