He makes beauty out of ashes – have you ever sat around to think about what that actually means? I have, and I know first hand out of our own pain and struggles; there is joy that might not have been found without walking THROUGH it. I’ve contemplated this space, blog, or whatever you want to call it for a VERY long time. Back in January one of my best friends told me I should start a blog and run a ½ marathon. She told me I needed to set goals for myself. I distinctly remember laughing and saying I hate running and I have nothing to say. For some reason I’m now doing both. At points while typing I've asked myself why, but then realized why not. It may be hard and scary but you know what's worse. REGRET. So here I am attempting to be vulnerable and real about raising a medically complex child and walking this unknown path all while still trying to manage being a good wife, present mom, daughter, sister, friend, employee etc.. and let me be honest it’s HARD and lonely at times.
More often than not, I have wished there was a road map for our journey, wishing, hoping, and praying for answers. Four year ago when our lives were turned upside down I remember Googling some of Sloane’s conditions and there wasn’t much to read and the doctors couldn't tell us anything definitive about her future. Instead we live in 6-month increments, with appointments and therapies in-between MRIs believing everything is stable. What I’ve started to realize in the midst of these waiting periods, maybe it’s better this way. I don’t want a diagnosis defining our future of what she can and can’t do. I want to push her forward to be the best she can be. I remember telling the doctors that she can do everything everyone else does until she shows us differently. Guess what, so far she does everything. We were told she wouldn’t hear out of her right ear. When I whisper in her ear that is sutured shut and tell her she’s a superhero, she repeats back to me what I've said. When the doctors told us she wouldn’t be an athlete because of the tumor on her cerebellum, she is starting her first soccer season this fall. It's incredible to see a child overcome the supposed limits of a diagnosis. So I say all of that to say this - I hope this will be a space of hope and lots of laugher and learning together how to navigate the everyday challenges or raising medically complex kids but doing it gracefully and with JOY.