Post by @mackenzies_eb_journey

This is a tiny snippet of my brain every day. I think about these questions daily. Especially the ones at the end. This is parenting EB. This is parenting a child with a devastating medical condition. This is trying to create normal in a life that most people acknowledge is their biggest fear: watching your child live a life of pain. Most people tell me they can’t imagine how we live this life. But the truth is, you can imagine it. It’s just so horrific you don’t want to. And I don’t blame you. And yet in this life of horrible pain, she is the light of my life, the sunshine of our family. She’s the beacon of hope for us, the reason I have to believe a cure is possible. She gives me the drive to change this world for her. But to say this life with EB is hard would be the biggest understatement. And we will keep moving forward. #griefjourney #vulnerability #dailylife #momlife #fyp