My new normal. What is that? Every day I go through the motions. Meds, fluids, vitamins, more fluid, germ control, caution control and fluids and meds again. It is just our normal, our days, her life. So most every day it is just what we do, it’s life. But yesterday getting the call that we need to get ultrasounds of her kidney and an echo of her heart because of her enlarged heart wasn’t a normal day to day. So it’s times like that, that the reality hits and hits hard. As a family I think we deal with it well. It helps that she is such a spunky happy child that people are drawn to. I absolutely love this place for what they are able to do for her, but in the same turn hate it. Have such anxiety the moment I turn into the hospital drive I remember the days, and nights walking across the cross walk from the parking garage or the Ronald McDonald house. The sound of the auto paper towel rolls that bring me right back to the washing station in the NICU. You’d think that the fears and anxiety would subside, but nope. As she lays on the table as they ultrasound her or holds her arm out to be poked, unfazed, since this is “her” normal. It makes my heart ache. I hate that she has to deal with this disease, and that she knows nothing else than monthly doctors, daily meds and a fluid Nazi Mom. So now we wait for lab results, ultrasound results and return home to our normal. Dealing with this stupid disease.