I am not going to sugarcoat what’s been going on. Lily is having an extremely difficult time doing things she used to do effortlessly like sitting up on her elbows, standing, walking, breathing.

I’ve been busy trying to procure additional help at home – whether it’s friends or family stopping by in the evenings or hiring a morning aide to come and help us get out the door. We just got approved through Medicaid for a home health aid to be with us 24/7 but there are still numerous steps to actually get that support into place. It still may be a matter of months until this service kicks in.

We are navigating through a new, terrifying TEMPORARY time. Through it all, this kid amazes me with her determination, grace and beauty. She is my hero.