Today was hard. I got discharged in the morning and we started our transition from the hospital to our stay at the Ronald McDonald house. We are beyond grateful for this privilege – we have a room and bathroom and access to kitchens where dinner is cooked by volunteers most nights. There are free snacks and food ever-present and a kind and supportive staff and atmosphere. Despite this, it’s not where we wanted to be. To be vulnerable, we feel overwhelmed, confused, lost and very emotional. I keep telling myself “this is our temporary home”, but it just doesn’t feel right. 

We also were taught how to Maddox’s first CF treatment today. It is percussive lung PT that we have to do for 15 minutes twice a day. It is mostly preventative and actually he kind of enjoys it. We knew this was coming, but it still made his disease feel more real and that’s hard to process (Learn more about the therapy here if you’re interested! https://www.cff.org/managing-cf/chest-physical-therapy). 

“There will be joy in the morning. If it’s not good then He’s not done, no He’s not done with it yet.”