This episode I'm catching you up on what's been happening in our week and discussing the importance of learning to let grief and joy co-exist. As summer comes to a close, it's time for kid's to go back to school and cue: all the back to school photos that are smeared all over my instagram & facebook walls. Last year at this time, seeing these photos was a painful reminder that my children WEREN'T going to school. Yet another huge milestone/experience that we were missing out on. Listen in on how I overcame that hump and learned that it's okay to grieve those "normal" milestones we are missing out on with our children, but at the same time have so much joy and gratitude for the experiences we DO get with our kids on this special journey. Also... BIG NEWS! We found out this week that the FDA has APPROVED the first and only treatment for (the non-nuerological symptoms) ASMD! Read all about it here: https://www.globenewswire.com/news-release/2022/08/31/2507978/0/en/Press-Release-XenpozymeTM-olipudase-alfa-rpcp-approved-by-FDA-as-first-disease-specific-treatment-for-ASMD-non-CNS-manifestations.htmlhttps://www.confessionsofararediseasemama.com/Learn more about my children's fight with ASMD and donate to our cause:https://www.saveromanandstella.com/Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/